Running head: A CASE STUDY OF JOURNEY MAPPING
A case study of journey mapping to create a palliative care pathway for
Naotkamegwanning First Nation:
An analysis and lessons learned using participatory action research
A thesis submitted to the Faculty of Graduate Studies, Lakehead University
in partial fulfillment of the requirements of the degree
Master of Health Sciences with Specialization in Gerontology
Jessica Chiovitte Koski
Lakehead University
0501394
29 August 2016
Department of Health Sciences, Lakehead University
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Copyright © by Jessica Chiovitte Koski, 2016
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Thesis Abstract
Background
There is little known about how to conduct an effective journey mapping process to
design a care pathway for First Nations community members who would benefit by having
access to local, community-based palliative care programs. This research analyzed a unique
journey mapping process that was developed and implemented collaboratively by a Leadership
Team of community members in Naotkamegwanning First Nation in Northwestern Ontario, and
the members of an EOLFN Research Team based at Lakehead University. The purpose of the
journey mapping process was to create the care pathway to guide providing integrated palliative
home care for community members who choose to die at home. This thesis analyzes that
journey mapping process and offers lessons learned and promising practices that may be
applicable for use in other First Nations communities.
This thesis research was nested within a five-year (2010-2015) participatory action
research (PAR) project entitled “Improving End-of-Life Care in First Nations (EOLFN)
Communities: Generating a Theory to Guide Program Policy and Development” (Principal
Investigator: Dr. Mary Lou Kelley). The EOLFN project was funded by the Canadian Institutes
of Health Research (CIHR) and was conducted with four First Nations community partners:
Naotkamegwanning First Nation, Fort William First Nation, Peguis First Nation and Six Nations
of the Grand River Territory. The overall goal of the EOLFN project was to improve the end-of-
life care in these four First Nations communities through developing community-based palliative
care programs and creating a culturally appropriate theory of change to guide palliative care
program and policy development nationally.
Thesis aim
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The aim of this thesis is developing and implementing the journey mapping process in
Naotkamegwanning, which was one of approximately twenty community-led interventions that
were created and implemented throughout the five years of the EOLFN research.
The research questions guiding this thesis are:
1. How effective was the journey mapping process to create the care pathway for integrated
palliative home care for Naotkamegwanning community members who choose to die at home?
2. What learnings and promising practices have emerged from this case study that can inform
development of an EOLFN workbook tool on journey mapping for use by other First Nations
communities?
Methods
This thesis research employs an instrumental case study design, embraces an Indigenous
paradigm as its theoretical perspective, and a participatory action research methodology.
Qualitative data in the form of researchers’ field notes, observations, photos, workshop summary
reports and video recordings were collected during the four journey mapping workshops (2013-
2014); these existing data were analyzed for this thesis as secondary data sources. After the
completion of the four journey mapping workshops, primary data collection for the thesis
included a focus group with community members and an online survey with health care
providers who were external to the community (e.g. hospital, home care providers, health access
centre staff) but provided services in Naotkamegwanning.
Analysis
The focus group data were analyzed first to ground the analysis in the voice of the
community. For the community member focus group, an inductive approach was utilized to
analyze the data. Using a verbatim transcript, the analysis was done in three stages (1) line-by-
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line analysis of the transcript to identify all the ideas expressed during the focus group, (2)
grouping similar ideas into themes and subthemes, and (3) organizing the themes to address the
research questions. Finally, the qualitative findings from the focus group were visually
displayed in a figure, and elaborated in the thesis with quotes to support the themes identified.
The existing data were analyzed next, using the themes generated from the focus group
analysis as an evaluation framework, an approach embedded within the PAR methodology. In
addition, a guide for analysis of existing data was created based on the research questions by
hypothesizing evaluation metrics with my supervisor and these questions were also used in
examine the data. Using these two analysis strategies created confidence that all relevant
information had been extracted pertaining to the thesis research. This process intended to ensure
no ideas, themes, or categories relevant to the research questions were overlooked. I continued
to meet with my thesis supervisor on a regular basis to ensure rigour.
Finally, the online survey data were analyzed. These data included numerical data
collected using rating scales that were analyzed using descriptive statistics and summarized in
tables and open-ended questions to capture participants’ opinions about the journey mapping
experience. The qualitative data from the open-ended questions were grouped and three over-
arching themes were identified and summarized.
Findings
The qualitative findings from the focus group produced a perched eagle figure called
“Conducting effective palliative care journey mapping: Learnings and promising practices” and
included a grounding theme and four overarching themes. The grounding theme “Journey
mapping must be founded in the community’s vision for change” emphasized that the
community must perceive and articulate expected benefits for its members before undertaking
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the journey mapping process to create the palliative care pathway. Supporting the foundational
theme are the core ethical concepts of conducting journey mapping in First Nation’s
communities: “building trusting relationships” and “honouring community control.” The first
overarching theme, journey mapping requires community planning, identified the importance of
community support and awareness to ensure the community’s readiness for journey mapping.
The second overarching theme, journey mapping requires time commitment, described the
lessons learned related to time and identified that journey mapping could not be completed
without stakeholder contribution and follow through. The third overarching theme, journey
mapping requires that communication is respectful of the community’s beliefs, revealed that
journey mapping workshops must be conducted in a culturally relevant format that is familiar to
the community. The fourth overarching theme, journey mapping develops a culturally
appropriate care pathway, established the importance of Elder guidance throughout the journey
mapping process and that the journey mapping workshops ultimately resulted in a care pathway
that is respectful of the individual’s wishes, values and beliefs.
The quantitative findings from the survey included rating scale statements related to the
overall journey mapping experience. Respondents rated statements in four categories, including:
service delivery, relationship building, the journey mapping workshop process, and
recommendation of future journey mapping. Overall results from the rating scale were very
positive and there was a high level of agreement on most items amongst respondents that journey
mapping was an effective in developing a palliative care pathway.
The qualitative findings from the survey included three overarching themes. The first
theme to emerge was that the journey mapping workshops increased communication and
established partnerships between community members and health care providers. The second
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theme to emerge was that the journey mapping workshops were a time commitment. The third
theme to emerge, and key takeaway from the survey was that all respondents agreed that journey
mapping is an effective tool to create the care pathway.
Conclusion
The journey mapping workshops developed an innovative and effective process for
Naotkamegwanning First Nation to create their palliative care pathway. The promising practices
and lessons learned from this research can be used to guide other First Nation’s communities and
participating stakeholders in creating a culturally appropriate care pathway.
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Co-Authorship Statement
I hereby declare that I am the sole author of this thesis.
I have worked as a Research Assistant and Graduate Student Trainee on the “Improving end-of-
life care in First Nations communities” research project for the last five years. This thesis
research is nested within that overall project, and utilizes previously collected data which I have
independently analyzed.
In all cases, the key ideas in this thesis, composition, data collection and analysis, were
performed by the author with the supervision of Dr. Mary Lou Kelley, Lakehead University,
Professor Emeritus, School of Social Work and the thesis committee members Dr. Elaine
Wiersma Lakehead University, Department of Health Sciences and Dr. Chris Mushquash,
Lakehead University, Department of Psychology and Northern Ontario School of Medicine.
I understand that my thesis may be made electronically available to the public.
I certify that, with the above qualifications, this thesis, and the research to which it refers, is the
product of my own work.
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Acknowledgements
Miigwetch to the Elders, leadership team and community members of
Naotkamegwanning First Nation for participating in this research. This thesis would not have
been possible without the stories you shared and the time your community dedicated to the
journey mapping process. Miigwetch to Ms. Maxine Crow, Naotkamegwanning Home and
Community Care Coordinator and Mrs. Wilma Sletmoen for your significant contributions to
this research. Miigwetch to the Lakehead University Elder in Residence, Elder Gerry Martin.
I would like to thank the participants and working group partners, health care and social
service providers that took part in the journey mapping workshops. Thank you for your time and
passionate insights and contributions to this research.
Words cannot express the gratitude and appreciation I have for Dr. Mary Lou Kelley, my
thesis supervisor, gerontology professor, professional supervisor, and mentor. It has been a
pleasure to learn from and be mentored by a leader in the field of palliative care. Over the years
you have provided numerous opportunities for me to learn and build new skills as both an
employee and student. I feel truly blessed to have met you. Thank you so much Dr. Kelley for
your time, guidance, encouragement and patience.
In addition to Dr. Kelley, thank you to the Improving End of Life Care in First Nations
Communities EOLFN Research Team, Holly Prince, Jill Marcella, Melody Wawia, and
Kimberly Ramsbottom for your open-door policy, being sounding boards for ideas, and
continuous support. As a team you selected me as a two year recipient of the Canadian Institutes
of Health Research (CIHR) scholarship/traineeship. I acknowledge and thank the CIHR for
providing the funding for my EOLFN scholarship/traineeship. Thank you to my colleagues at
the Centre for Education and Research on Aging and Health (CERAH) for your encouragement
and support in the pursuit of my academic goals.
I wish to thank my thesis committee members from Lakehead University, Dr. Elaine
Wiersma and Dr. Chris Mushquash, and my external reviewer from Queen’s University, Dr.
Heather Castleden for agreeing to participate, contribute and be a part of this endeavour. Your
expertise and thorough feedback have been invaluable.
To my husband, Trevor, parents, Dan and Camy, in-laws Lee and Diana, dog, Kora, Paul and
Peg Podemski, closet girlfriends Melissa Skoglund and Melissa Gaslin, and all of my friends and
family: thank you for believing in me. Thank you for your patience and support. I have missed
you all tremendously!
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Dedication
This work is dedicated to:
My grandmother, Lucille Antoinette Chiovitte (nee: Anderson) 1919-1998.
Everyone deserves the choice to die at home.
I wish you would have died at home like you told us you wanted to.
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List of Figures
Figure 1. Process of Palliative Care Program Development ........................................................ 40
Figure 2. Naotkamegwanning journey mapping workshops timeline .......................................... 50
Figure 3. Journey Mapping Workshop Packet Sample ................................................................ 52
Figure 4. A comparison of the key processes in the path of care for a Naotkamegwanning
community member: Current and future state .............................................................................. 54
Figure 5. Current and Potential Future State ................................................................................ 59
Figure 6. Workshop #2 interactive session: Community strengths .............................................. 61
Figure 7. Workshop #2 interactive session: Community barriers ................................................ 61
Figure 8. Nine stage care path flowchart ...................................................................................... 68
Figure 9. The Nine Stage Wiisokotaatiwin Program Care Path ................................................... 71
Figure 10. Naotkamegwanning First Nation (Whitefish Bay) Map ............................................. 79
Figure 11. NWLHIN catchment area map ................................................................................... 83
Figure 12. Conducting effective palliative care journey mapping: Learnings and promising
practices ...................................................................................................................................... 104
Figure 13. Integrating the expectations of both the community and external health care providers
..................................................................................................................................................... 168
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List of Tables
Table 1. Overview of journey mapping participants .................................................................... 47
Table 2. List of palliative care services and providers.................................................................. 63
Table 3. Workshop Three Attendees ............................................................................................ 66
Table 4. Definitions and principles of ownership, control access and possession (OCAP®) ...... 75
Table 5. Existing data analyzed for this thesis .............................................................................. 89
Table 6. Guide for analysis of existing data ................................................................................. 97
Table 7. Journey mapping workshops 1- 4: Contribution to the lessons learned in creation of the
care pathway ............................................................................................................................... 125
Table 8. Journey mapping participants ....................................................................................... 128
Table 9. Quantitative survey rating scale scores ......................................................................... 147
Table 10. Quantitative survey rating scale summary .................................................................. 148
Table 11. Guiding principles and examples of their use during journey mapping workshop #2 162
Table 12. Lessons learned for weaving Indigenous knowledge and mainstream science and
examples of their use during the journey mapping process ........................................................ 171
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Table of Contents
Thesis Abstract............................................................................................................................................. iv
Co-Authorship Statement ............................................................................................................................. ix
Acknowledgements ....................................................................................................................................... x
Dedication .................................................................................................................................................... xi
List of Tables ............................................................................................................................................. xiii
Table of Contents ....................................................................................................................................... xiv
Chapter one: Introduction ........................................................................................................................... 18
Palliative care definition ......................................................................................................................... 18
Chapter two: Literature review ................................................................................................................... 22
Aboriginal health status and barriers to accessing provincial/territorial health services ........................ 22
Provision of health services to people living in First Nations Communities .......................................... 23
Journey mapping and value stream mapping as a strategy for quality improvement in health services . 24
Researching from an Indigenous paradigm ............................................................................................ 27
Public health and palliative care ............................................................................................................. 34
Summary ................................................................................................................................................. 36
Chapter three: Background to the thesis research ....................................................................................... 38
Improving end-of-life care in First Nations (EOLFN) communities research project ............................ 38
Naotkamegwanning Community Needs Assessment Results. ............................................................ 43
Chapter four: Case study description .......................................................................................................... 46
Journey mapping introduction ................................................................................................................ 46
Journey mapping workshops ................................................................................................................... 48
Workshop one: Introducing the journey mapping process and engaging stakeholders. ..................... 53
Workshop two: Value stream mapping. .............................................................................................. 57
Workshop three: Finalizing the care path and next steps. ................................................................... 65
Workshop four: Including cultural components in the care path. ....................................................... 70
Purpose and rational for this research ..................................................................................................... 72
Chapter five: Methodology ......................................................................................................................... 74
Study purpose and research questions .................................................................................................... 74
Ethical considerations in Indigenous health research ............................................................................. 74
Design ..................................................................................................................................................... 75
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Understanding the community context of the journey mapping ............................................................. 78
The regional context of the journey mapping. .................................................................................... 81
Participant recruitment and inclusion criteria ......................................................................................... 84
Focus group participants. .................................................................................................................... 85
Survey participants. ............................................................................................................................. 85
Research Ethics Board and ethics procedures. .................................................................................... 86
Data collection ........................................................................................................................................ 87
Summary of previously collected data. ............................................................................................... 87
Focus group with community members. ............................................................................................. 90
On-line survey with health care providers and EOLFN Research Team members. ........................... 92
Data analysis ........................................................................................................................................... 92
Focus group transcription and analysis. .............................................................................................. 93
Analysis of existing workshop data. ................................................................................................... 95
Survey analysis. .................................................................................................................................. 98
Rigour ..................................................................................................................................................... 98
Triangulation. ...................................................................................................................................... 99
Member checking. ............................................................................................................................. 100
Chapter six: Findings ................................................................................................................................ 102
Findings from the qualitative data analysis: ......................................................................................... 102
Foundational theme: Journey mapping must be founded in the community’s vision for change. .... 107
Core ethical concepts of conducting journey mapping Naotkamegwanning First Nation .................... 110
Building trusting relationships .......................................................................................................... 110
Honouring community control .......................................................................................................... 112
Theme one: Journey mapping requires community planning. .......................................................... 113
Ensure community readiness for journey mapping. ...................................................................... 114
Obtain community support and create awareness. ........................................................................ 117
Theme two: Journey mapping requires time commitment. ............................................................... 121
Stakeholder contribution and follow through is required ............................................................. 126
Theme three: Journey mapping requires that communication is respectful of the community’s beliefs.
.......................................................................................................................................................... 132
Journey mapping workshops are conducted in a culturally relevant format ................................. 135
Theme four: Journey mapping develops a culturally appropriate care pathway. .............................. 140
Journey mapping includes Elder guidance throughout the process .............................................. 140
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The care pathway is respectful of the individual’s wishes, values and beliefs ............................. 143
Summary of qualitative findings ........................................................................................................... 146
Findings from the survey data ............................................................................................................... 147
Quantitative survey findings: Responses to rating scale statements. ................................................ 147
Service delivery related outcomes. ............................................................................................... 150
Relationship building outcomes. ................................................................................................... 150
Journey mapping workshop process. ............................................................................................ 150
Future journey mapping. ............................................................................................................... 151
Qualitative survey findings: Responses to open-ended questions. ................................................... 151
Journey mapping increased communication and established partnerships. .................................. 151
Journey mapping was a time commitment. ................................................................................... 153
Journey mapping is recommended to create a care pathway. ....................................................... 155
Summary of survey findings ................................................................................................................. 157
Chapter 7: Discussion ............................................................................................................................... 158
Most significant findings ...................................................................................................................... 158
Discussion of lessons learned and promising practices ........................................................................ 159
Contribution of stakeholders was essential ....................................................................................... 160
Value stream mapping is not recommended ..................................................................................... 161
Workshop facilitators and all participants must remain culturally aware, be responsive and
continually monitor the audience ...................................................................................................... 163
Journey mapping improved communication, improved service integration and enhanced services 164
Revised and improved the discharge planning process. ................................................................ 164
In-home chart. ............................................................................................................................... 165
Use of Ontario Telemedicine Network (OTN) in the community. ............................................... 166
Journey mapping integrated the expectations of the community and the health care providers ....... 166
Contribution of findings to literature on palliative care in First Nations communities ........................ 172
Study limitations ................................................................................................................................... 173
Implications of findings for policy........................................................................................................ 174
Implications for practice ....................................................................................................................... 175
Implications of findings for future research .......................................................................................... 176
Chapter 8: Conclusion ............................................................................................................................... 178
Lexicon of terminology discussed in this thesis ....................................................................................... 181
References ................................................................................................................................................. 183
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Appendices ................................................................................................................................................ 189
Appendix A: Focus Group Information Letter (for the current study) ................................................. 190
Appendix B: Wiisokotaatiwin Program Journey Mapping: Focus group guide ................................... 192
Appendix C: Lakehead REB focus group approval letter ..................................................................... 193
Appendix D: Original Information Letter (overall EOLFN project) .................................................... 194
Appendix E: Original Informed Consent (overall EOLFN project) ..................................................... 196
Appendix F: Student investigator TCPS certificate .............................................................................. 197
Appendix G: Lakehead University REB “paperless” approval of thesis .............................................. 198
Appendix H: Email body for on-line survey participants ..................................................................... 199
Appendix I: Survey Participant Information Letter and Consent ......................................................... 200
Appendix J: External health care provider and research team survey .................................................. 201
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Chapter one: Introduction
Aboriginal
1
Canadians are aging and those 65 years old
2
and older are expected to grow
from 5.9% of the total Aboriginal population in 2011 to between 15.4% and 16.2% by 2036
(Statistics Canada, 2011c)
3,4
. Median age of Aboriginal Canadians will increase from 27.7 years
in 2011 to between 34.7 and 36.6 years in 2036 (Statistics Canada, 2011c)
3,4
. While the life
expectancy of Aboriginal Canadians has increased, it remains approximately seven years less
than non-Aboriginal Canadians (Health Council of Canada, 2013). When compared to non-
Aboriginal Canadians, heart disease is 1.5 times higher, type 2 diabetes is 3-5 times higher and
tuberculosis infection rates are 8-11 times higher (Statistics Canada, 2006). Many Aboriginal
people are living with and dying from chronic health conditions without access to palliative care
despite excellent evidence from medical research that people with advanced chronic disease in
the last year of life benefit by receiving palliative care (Carstairs, 2010; Fitzsimons et al., 2007).
Palliative care definition
This thesis utilizes the term “palliative care” as defined by the World Health
Organization (WHO):
Palliative care is an approach that improves the quality of life of patients and their
families facing the problem associated with life-threatening illness, through the
prevention and relief of suffering by means of early identification and impeccable
1
The descendants of the original inhabitants of North America. The Canadian Constitution recognizes three groups
of Aboriginal people — Indians, Métis and Inuit. These are three separate peoples with unique heritages, languages,
cultural practices and spiritual beliefs (Government of Canada. Aboriginal Affairs and Northern Development
Canada, 2012).
2
This statistic refers to Aboriginal persons 65 and over, however Health Canada (1998) defines Aboriginal seniors
as those 55 years and older due to the health inequalities and prevalence of chronic and life limiting disease they
face.
3
The Aboriginal identity variable used in these projections includes those that self-identified as: registered Indian,
non-status Indian, Métis, Inuit, other Aboriginal people, and non-Aboriginal people (Statistics Canada, 2011a).
4
The projections from 2011 to 2036 vary depending on fertility, ethnic mobility and internal migration. (Statistics
Canada, 2011c).
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assessment and treatment of pain and other problems, physical, psychosocial and
spiritual.
According to the WHO (2015), palliative care:
provides relief from pain and other distressing symptoms; affirms life and regards dying
as a normal process; intends neither to hasten or postpone death. Palliative care
integrates the psychological and spiritual aspects of patient care, offers a support system
to help patients live as actively as possible until death, and also offers a support system to
help the family cope during the patient’s illness and in their own bereavement. In
addition palliative care uses a team approach to address the needs of patients and their
families, including bereavement counselling, if indicated. Palliative care will enhance
quality of life, and may also positively influence the course of illness, and is applicable
early in the course of illness, in conjunction with other therapies that are intended to
prolong life, and includes those investigations needed to better understand and manage
distressing clinical complications. (http://www.who.int/cancer/palliative/definition/en/).
In the last decade, the concentration and understanding of palliative care has shifted from
focus on end-of-life care and cancer care, or ‘what to do when there is nothing else we can do’,
to being appropriate at the time of diagnosis with a chronic, life-limiting illness (EOLFN
Research Team, 2015; A. S. Kelley & Meier, 2010). Palliative care should be an option
available in any healthcare setting, and be offered as the person’s needs develop; rather than
urgently when the person is in a health crisis (World Health Organization Regional Office for
Europe, 2004). An integrated approach to palliative care – one that is offered at the time of, or
early in the diagnosis of a chronic, life-limiting condition and throughout the illness trajectory,
improves quality of life and reduces suffering (Aiken et al., 2006; Bakitas et al., 2009; Canadian
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Hospice Palliative Care Association, 2014; Connor, Pyenson, Fitch, Spence, & Iwasaki, 2007;
Temel et al., 2010)
Currently, many health care providers, citizens and researchers across Canada are uniting
to advocate for a national Pan-Canadian palliative care strategy ("Pan-Canadian Palliative and
End-of-life Care Strategy," 2014) that would include offering palliative care in First Nations
communities for those who wish to receive it. The Ontario Ministry of Health and Long Term
Care has endorsed a Declaration of Partnership and Commitment to Action to implement high
quality palliative care across Ontario regardless of where people live and has implemented
regional palliative care networks that are expected to provide care to people in First Nations
communities (Quality Hospice Palliative Care Coalition of Ontario, 2011). The need to develop
access to palliative care for all Canadians is felt to be especially urgent now as the federal and
provincial governments are developing legislative frameworks to implement Physician Assisted
Dying by June 7, 2016. Ensuring Canadians access to medical support to end their life in the
absence of guaranteeing them access to quality palliative care, fuels a moral and policy debate.
It is well documented that many First Nations
5
people want the opportunity to die
comfortably in their home communities (EOLFN Research Team, 2013a, 2013b, 2013c, 2013d;
Habjan, Prince, & Kelley, 2012; Hotson, Macdonald, & Martin, 2004) surrounded by family and
friends in a culturally safe manner; however jurisdictional issues and barriers to home care
services (Hotson et al., 2004) often lead to hospital transfers and hospital deaths. This results in
First Nations people being uprooted from their home communities to receive care in urban
5
According to the Government of Canada, Aboriginal Affairs and Northern Development Canada (2012), First
Nation is a term that came into common usage in the 1970s to replace the word "Indian," which some people found
offensive. Although the term First Nation is widely used, no legal definition of it exists. Among its uses, the term
"First Nations peoples" refers to the Indian peoples in Canada, both Status and non-Status. Some Indian peoples
have also adopted the term "First Nation" to replace the word "band" in the name of their community (Government
of Canada. Aboriginal Affairs and Northern Development Canada, 2012). In this thesis, the terms First Nations
peoples is used to describe the community members involved in this research as a collective group.
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centres (Gorospe, 2006; Kitzes & Berger, 2004), creating cultural, linguistic and logistical
barriers (Habjan et al., 2012). Patients and family members are faced with lengthy travel times
with possible relocation to receive care, or in order to be near their loved one’s side. Localized,
community-driven palliative care programs would better respect the culture, traditions, and
languages of First Nations seniors, their family members, and caregivers (Ellerby, McKenzie,
McKay, Gariepy, & Kaufert, 2000; Habjan et al., 2012; Hotson et al., 2004). In addition, access
to quality community-based palliative care programs could reduce health care costs and system
burdens by decreasing the number of unnecessary hospital admissions, hospital days and
frequency of emergency department visits (Paz-Ruiz, Gomez-Batiste, Espinosa, Porta-Sales, &
Esperalba, 2009).
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Chapter two: Literature review
Aboriginal health status and barriers to accessing provincial/territorial health services
The long lasting effects of the residential school system, which attempted to assimilate
Aboriginal people into mainstream Canada (Richmond & Ross, 2009) has continued to impact
Aboriginal Canadians. Consequences included loss of culture and traditions and increased racism
against Aboriginal Canadians. Further impacts are an unbalanced distribution of resources,
power, freedom and control, thus influencing health and socio-economic status (Adelson, 2005).
The high level of chronic disease amongst First Nations people is related to inadequate housing,
lack of employment opportunities and other social determinants of health in First Nations
communities (Adelson, 2005; Kant, Vertinsky, Zheng, & Smith, 2013; Mikkonen & Raphael,
2010; Richmond & Ross, 2009).
Many Aboriginal Canadians are also faced with barriers in accessing provincial or
territorial health care across their lifespan. According to Habjan, Prince & Kelley (2012) these
barriers can be grouped into four categories: (1) barriers related to geography and availability of
services; (2) economic barriers; (3) systemic barriers; and (4) barriers related to the specific
needs of the Aboriginal population. These may include, but are not limited to, geography,
location, infrastructure, jurisdictional issues, language, population, poverty, lack of education,
and lack health care of coverage. Living in remote and rural areas contributes to an inability to
access health care due to infrastructure issues, transportation issues, long wait times, or lack of
access to health care providers or specialists. Lack of education can be associated with failure to
seek treatment early in an illness trajectory, or economic insecurity may result in an inability to
pay for prescriptions or continue with treatments that are uninsured. Unfamiliarity with the
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health care system may also result in an inability to navigate the system and apply for necessary
financial assistance for uninsured health benefits.
Provision of health services to people living in First Nations Communities
Due to treaty agreements, the federal government, rather than the provincial government,
is responsible for providing health care services on-reserve. However, First Nations and Inuit
Health Branch (FNIHB) does not fund palliative care as an essential service that is part of
localized First Nations and Inuit Home and Community Care (FNIHCC) programs (Hotson et al.,
2004; Prince & Kelley, 2010). Thus access to community-based care and services for people
with advanced chronic or terminal disease are limited, and provincial services are not
consistently available.
FNIHCC was established and funded by Health Canada in 1999 as a response to the
urgent home care needs in First Nations communities (Health Canada, 2004) and may include
nursing care, personal, home support, and in-home respite care (Forbes & Edge, 2009; Health
Canada, 2011). FNIHCC programs are funded Monday to Friday during the daytime, and they
are not funded to provide services during nights and weekends. FNIHCC often cannot support
clients who require palliative care on nights and weekends due to limited funding and staffing
(Health Council of Canada, 2013). Lack of access to palliative care in the community often
results in transfers to hospital, located in urban centres, removing the clients from their home
community and culture. While reliable data on how many Aboriginal people die in hospital of an
expected death in Northwestern Ontario could not be retrieved, anecdotal evidence suggests this
is very common.
In 2010, a Joint Working Group (JWG) on Continuing Care Policy Development for First
Nations and Inuit was established. The JWG recognized that:
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Jurisdictional issues resulted in a lack of responsiveness to the needs of First Nation
communities, significant gaps in services to these communities, and a lack of long-term
planning and development of services. Any attempts to address these issues within the
current policy context have had limited success (Nova Scotia Aboriginal Home Care
Steering Committee, 2010).
The most significant costs to the Canadian health care system at the end-of-life are in-
patient hospitalizations (Dumont et al., 2009; Fassbender, Fainsinger, Carson, & Finegan, 2009).
According to the Ontario Association of Community Care Access Centres, et al. (2010) a 10%
shift of patients who require palliative care from an acute care setting to a home care setting
results in $9 million in savings. The report estimated that the cost of providing palliative care
services in the home was approximately $4,700 per client (which included non-palliative
services), compared to approximately $19,000 per client in an acute care setting.
While the existing literature gives a range of health care system costs, it is based on
traditional off-reserve home care services, and has primarily been done in urban centres.
Aboriginal Canadians deserve access to the same care offered to all Canadians, yet jurisdictional
and funding issues continue to cause barriers to First Nations communities seeking to establish
local palliative care programs.
Journey mapping and value stream mapping as a strategy for quality improvement in
health services
The focus of this thesis, journey mapping to create a palliative care pathway for
Naotkamegwanning First Nation, includes adaptation of the concepts “customer journey
mapping” and “value stream mapping” which originated in the marketing and manufacturing
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25
industries, respectively. For the purposes of this research, the term client is used similarly to the
term customer as described later in this section by Rother and Shook (1999).
Previous use of the term “journey map” or “journey mapping” have been linked to a
customer experiences for marketing purposes. According to Richardson (2010):
A customer journey map is a very simple idea: a diagram that illustrates the steps your
customer(s) go through in engaging with your company, whether it be a product, an
online experience, retail experience, or a service, or any combination. The more
touchpoints you have, the more complicated—but necessary—such a map becomes.
The goal of customer journey mapping is to create a framework that is rooted in data-
driven research and visually represented by different phases, that improves the overall
experience of the customer, understands how customers are interacting at various touchpoints,
and identifies areas for improvement (Lord, 2013).
Graphical depictions of processes, such as flow charts, were first introduced in the
manufacturing industry over a century ago (Baudin, 2013). In the book “Installing Efficiency
Methods” (Knoeppel, 1915), illustrates a diagram of the routing process in a manufacturing
plant, and the nature and use of methods and forms in a factory. The process is represented
graphically from start to finish with circles and lines identifying the various departments and
steps involved in the manufacturing process. Over a century later, these pictorial algorithms have
evolved from simple process flow diagrams to the multiple industry buzz term “value stream
map.”
The Toyota Production System (TPS) coined the phrase “material and information flow
analysis” which is the way engineers illustrate both current and future states to establish flow,
eliminate waste (muda), and add value (Rother & Shook, 1999). The lean implementation
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26
practices of the TPS have established three flows in manufacturing; the flow of: (1) material, (2)
information and (3) people/process (Rother & Shook, 1999).
In their book Learning to See: Value Stream Mapping to Add Value and Eliminate Muda
(1999), TPS employees Shook & Rother introduce the term “value stream” as:
all the actions (both value added and non-value added) currently required to bring a
product through the main flows essential to every product: (1) the production flow from
raw material into the arms of the customers, and (2) the design flow from concept to
launch. Taking a value stream perspective means working on the big picture, not just
individual processes; and improving the whole, not just optimizing the parts (p. 3).
Since the introduction of the value stream map in 1999, it has developed from a
manufacturing based model to a tool used in a variety of clinical and patient care settings. The
aim is to improve quality and efficiency of health services by making a service “lean” – a term
commonly used in value stream mapping. Much attention has been given to identifying the
current state of how patients flow through particular health care settings or departments and how
unnecessary steps in the process (waste) can be eliminated, often with health care utilization
management goals such as, providing better patient care, seeing an increased number of patients
per day, and reducing costs.
Many of the stakeholders involved in the journey mapping workshops, such as
Community Care Access Centres and hospitals have embraced value stream mapping in their
organizations. The EOLFN project adopted the value stream mapping approach in hopes of
engaging the stakeholders in a familiar and accepted process of quality improvement. The
Naotkamegwanning needs assessment had indicated that the regional provider organizations did
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not understand what health services were available in the community, what the gaps in service
were, and how their own service could be integrated without duplication.
Researching from an Indigenous paradigm
This research adopts an Indigenous paradigm. When embarking in research utilizing an
Indigenous paradigm, a researcher must first consider four overarching aspects of paradigms in
general. These include: (1) ontology, (2) epistemology, (3) research methodology, and, (4)
axiology (Wilson, 2001). While an Indigenous perspective can be embedded into dominant,
Eurocentric research paradigms -- such as positivist, post positivist, constructivist, and critical
theorist -- until a researcher moves beyond Indigenous perspective to Indigenous paradigm, the
researcher cannot truly adopt an Indigenous methodology (Wilson, 2001, 2008). According to
Wilson (2001), “Indigenous research needs to reflect Indigenous contexts and world views: that
is, they must come from an Indigenous paradigm rather than an Indigenous perspective” (p. 176).
Exploring ontology from a theoretical lens, requires that the researcher “embrace multiple
realities” (Cresswell, 2013, p. 20) and ask themselves “what is real?” (Wilson, 2008). To unite
ontological beliefs and realities with epistemology, the researcher must understand that what
they think about reality is influenced by what they deem as real (Wilson, 2008).
These methodologies lend themselves to political histories among researchers and
Indigenous people. According to Kovach (2009), the political challenges are two-fold: A
qualitative researcher must first find and use a research approach that is not uprooting, and is
justified to “Indigenous standards on research so as to honour the tribal worldview” (p. 29).
“The second challenge” Kovach contends, is the “undeniable” (p. 29):
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“There is a fundamental epistemological difference between Western and Indigenous
thought, and this difference causes philosophical, ideological, and methodological
conflicts for Indigenous researchers” (p. 29).
Mi’kmaw Elder Albert Marshall suggests a two-eyed seeing approach that incorporates
Indigenous and Western ways of knowing and marrying the strengths from each by using from
both eyes (Bartlett, Marshall, & Marshall, 2012). Bartlett et al. (2012, p. 4) suggest the
following eight criteria for weaving Indigenous knowledge and mainstream science.
1. Acknowledge that we need each other and must engage in a co-learning journey.
2. Be guided by Two-Eyed Seeing.
3. View “science” in an inclusive way.
4. Do things (rather than "just talk") in a creative, grow forward way.
5. Become able to put our values and actions and knowledges in front of us, like an object,
for examination and discussion.
6. Use Visuals.
7. Weave back and forth between our worldviews.
8. Develop an advisory council of willing, knowledgeable stakeholders, drawing upon
individuals both from within the educational institution(s)and within Aboriginal
communities.
To incorporate Indigenous ways of knowing into a research methodology, a researcher
must move beyond the scope of the aforementioned research paradigms and focus on relational
accountability, while simultaneously being guided by appropriate axiology (Wilson, 2001).
Denzin & Lincoln (2011), acknowledge that axiology be “part of the basic foundational
philosophical dimensions of paradigm proposal” (p. 116). The following principles, identified
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by Atkinson (2001), which I have incorporated as a guide throughout my thesis research, signify
both ethical responsibility and cultural sensitivity by the researcher, and support the worldviews
of Indigenous people (Atkinson, 2001; Wilson, 2008).
Aboriginal people themselves approve the research and the research methods;
A knowledge and consideration of community and the diversity and unique nature that
each individual brings to the community;
Ways of relating and acting within community with an understanding of the principles of
reciprocity and responsibility;
A non-intrusive observation, or quietly aware watching;
A deep listening and hearing with more than ears;
A reflective non-judgemental consideration of what is being seen and heard;
Having learnt from the listening a purposeful plan to act with actions informed by
learning, wisdom, and acquired knowledge;
Responsibility to act with fidelity in relationship to what has been heard, observed, and
learnt;
An awareness and connection between logic of mind and the feelings of heart;
Listening and observing the self as well as in relationship to others;
Acknowledgement that the researcher brings to the research his or her subjective self. (p.
10)
Acknowledgement of subjective self. In terms of my background, I am a mid-aged non-
Indigenous American of Scandinavian and Italian descent who became a permanent resident of
Canada in 2014. I have lived in Thunder Bay, Ontario since November 2010 with my Canadian
husband and rescue dog, Kora. I grew up in the northern Minnesotan city of Duluth with my
mom and her boyfriend, who has raised me since I was 11 months old; I call him my dad. My
parents, were both only 19 when I was born, and being so young with a baby created additional
financial challenges. Outdoor activities, such as camping, fishing, motor sports and skiing have
always been a big part of my life thanks to my dad, Dan. My biological father died of a liver
infection when he was approximately 40 years of age, and my only memories of him were that
he had severe substance abuse issues.
My grandma Lucille, who was a child during the Great Depression and shaped my
persona based on the difficult times she experienced because she was a second mom to me while
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my young parents were busy “making a living.” My mom worked in front-line health care, and
my dad was a maintenance man, but their wages weren’t enough to get us by. We received
welfare and food stamps, and I received free meals at school. One Saturday a month, grandma
and I went to the neighbourhood church, and stood in line to receive government-provided
commodities such butter, processed cheese and evaporated milk.
My socioeconomic status as a child shaped who I have become today because I have
continued to pursue education as a means of providing myself with a better financial situation
than I grew up with. I was the first in my family to receive a university degree, though it came at
a hefty financial price tag, and I still have yet to pay back my student loans and interest.
As a Canadian immigrant, I have been constantly absorbing Canadian culture and
traditions for the past six years. I have learned to navigate and understand the Canadian health
care system as a person that needs to access it and as a Research Assistant and student that must
comprehend the complexities of it. I have learned the history and social determinants of health
that affect Indigenous Peoples of Canada, yet it is impossible for me to fully understand their
experiences. The stories I have been told from the First Nation’s communities participating in
the EOLFN research, combined with the support of my thesis supervisor, Dr. Mary Lou Kelley,
has inspired this thesis journey.
During my experience as an EOLFN Research Assistant for five years, I have listened to
the stories and experiences related to death and dying from numerous First Nations community
members involved in the EOLFN research project. During that time, I was involved in the
Naotkamegwanning journey mapping research for three years, as both a Research Assistant and
Graduate Student Trainee working on my thesis and conducting literature reviews, I believe I am
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qualified to accurately tell the journey mapping story to create the palliative care pathway for
Naotkamegwanning community members that want the option to die at home.
When my grandpa was diagnosed with cancer his final wish was to “die at home.” I was
only 19, but towards the end, I recall a hospital bed in the living room and various health care
workers tending to him and the IV. My grandma was 70 and tending to his needs around the
clock with little help, but she was always healthy and a hard-worker. Shortly after my grandpa
died in April 1998, my grandma had a stroke and went to the hospital and then a “nursing home.”
Every time I visited her, she said over and over that she wanted to go home. She started to
regain function, and my mom and some of her siblings saw to it that she returned home.
Looking back, I realize that she had cognitive issues following the stroke and was never the
same. She had another stroke and the hospital to nursing home scenario was repeated, but this
time she never left. My precious, healthy, strong grandma died exactly where she begged not to,
so I dedicate this research to my grandma, Naotkamegwanning community members and any
residents in a community that want the choice to die comfortably in their home.
My former work experience has helped prepare me for this thesis research as well. I have
worked in the health care system since 2005 and a variety of research administration roles since
2008. My previous work experience has included lean process training and application to create
clinical efficiencies and improved health outcomes at both a family medicine residency clinic
and a hospital. I have also worked in clinical trial participant recruitment, including medical
devices and pharmaceuticals. From 2010-2016 I was a Research Assistant on two five-year
qualitative research grants (Principal Investigator: Dr. Mary Lou Kelley) to improve the quality
of life for people dying and long-term care homes and the EOLFN project.
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I acknowledge the influence of these personal and professional experiences in my work
as a researcher. They shaped the knowledge, values and skills I bring to the work. I have
continually practiced self-reflection and discussed my understanding with members of the
research team, research partners and Elders on an ongoing basis in my effort to best represent the
lived experience of all of the research participants.
Wilson (2001) argues that an Indigenous paradigm stems from the belief that knowledge is
relational rather than an individual entity: “it is not the realities in and of themselves that are
important, it is the relationship that I share with the reality. It is not necessarily an object that is
important, it is my relationship with that object that becomes important” (p. 177). To analogize
this relationship, and shed light on Indigenous paradigm, Wilson cites the translation of sofa as
an object, which in Cree means “someplace where you sit.” Here it becomes obvious that the
relationship with the sofa is described rather than the item as a thing or object.
The sofa analogy sparked a reflection to my days as a Clinical Research Assistant. At
that time, researchers and research staff identified research participants as ‘subjects.’ Use of the
term subjects identifies the participants as “being acted upon” or subjugated, and includes
dominance associated with those involved in conducting the research; other than dominance, the
relationship is not described. When thinking of this relationship from a PAR approach and
Indigenous paradigm, the term research partner is more appropriate, and it eliminates the
dominant terminology and articulates the relationship as a partnership based on choice. Thus,
the participants and investigators, or partners, are choosing to work together towards common
research goals.
Indigenous research methods must be community-oriented and be grounded in the roots
of the communities in which the research is taking place (Smith, 2012). Culturally appropriate
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and traditional ways of exchanging information include sharing circles and storytelling. For this
research culturally appropriate methods were used. Observations during the journey mapping
workshops were quiet and non-obtrusive. I documented field notes and observations that
included non-verbal communication from the participants, and emerging stories and narratives
from them. The focus group was conducted in a culturally safe, convenient setting and was
facilitated in a semi-structured manner similar to a sharing circle.
Cresswell (2013) suggests, when engaging in field work:
…where the participants live and work – these are important contexts for understanding
what the participants are saying. The longer researchers stay in the “field” or get to know
the participants, the more they ‘know what they know’ from firsthand information.
PAR, which stems from a critical theory paradigm, focuses on social change and
positions itself well within the axiological beliefs of Indigenous people (Wilson, 2001).
According to Brazil (2012), a PAR approach “serves to deconstruct the Western research
paradigm and is inclusive toward an Indigenous understanding of knowledge.”
Reflexivity
Positionality. To “position” myself within this research I have openly communicated my
role as an EOLFN Research Assistant, EOLFN Graduate Student Trainee, and Health Sciences
Graduate Student responsible for writing a thesis. In the section that follows, I will communicate
my background as a middle-aged adult with lived experiences.
As a Research Assistant that worked closely with the First Nations communities involved
in the EOLFN project, my experience has been that storytelling is an important and effective way
to communicate. That being said, my intention in the findings chapter of this thesis will be to tell
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the journey mapping story respecting the voices of the Naotkamegwanning community members
providing it.
Narrative perspectives. My approach to this research is in both first and third person,
because of the various roles I have. There is the student researcher ‘I’ that has been involved in
the journey mapping process for nearly three years, the Research Assistant ‘I” that has worked
on the EOLFN project and along with the community for over five years, and the middle-aged
female adult ‘I’ that must explore the varying subjectivities of my life experiences (Sheldon &
Sargeant, 2007). I will disclose the different paradigms I bring to this research, be self-aware of
my preconceived assumptions, biases, and belief systems (Strauss & Corbin, 2008) and how my
background might inform my interpretation of the data during analysis (Cresswell, 2013). To
ensure transparency, from commencement of the research through to dissemination, I will also
disclose what I have to gain from the study.
Public health and palliative care
Palliative care as a public health issue was introduced over 25 years ago in a report by the
WHO, entitled “Cancer pain relief and palliative care.” The report recommended to countries
that they implement national policies on cancer pain relief and that palliative care include a
series of guiding principles as their foundation. The report also acknowledged that cancer pain
and symptom management have been inadequately treated, thus resulting in a “neglected public
health problem” (World Health Organization, 1990).
According to Stjernsward, Foley, & Ferris (2007):
Public Health Strategy (PHS) offers the best approach for translating new knowledge and
skills into evidence-based, cost-effective interventions that can reach everyone in the
population. For public health strategies to be effective, they must be incorporated by
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governments into all levels of their health care systems and owned by the community. (p.
486).
The public health approach to palliative care moves away from the traditional service
delivery approach, where care is delivered within professional services, and focuses on
community development, relying on the community as the basis of the care (Abel et al., 2013;
Kellehear, 2005). Abel et al. (2013) suggest a new model that builds on the public health
approach to palliative care and focuses on community-based care provided by family and health
care providers in the clients home rather than in an institution. The model suggests focusing on
policy change and an increased service provision so that quality end-of-life care can be provided
in the community (Abel et al., 2013). This approach is appropriate for First Nations
communities because it moves away from the Western, institution-based model and focuses on
increased service provision allowing clients to receive care in their home communities where
end-of-life traditions and ceremonies can be embraced.
Historically, the public health discipline has focused on large scale health promotion
strategies to reduce mortalities and morbidities and improve the overall health of a society on a
population level (Sallnow, Kumar, & Kellehear, 2012). However, an individual’s genetic
predisposition and the social determinants of health must also be considered in any public health
strategies that are initiated, including when they are targeted for First Nations communities.
Public health policy makers must consider community capacity development models and
understand that by building palliative care capacity at the community level and partnering with
the external health care providers and agencies, First Nations clients are able to receive
individualized care that fits with their cultural beliefs and traditions, supporting quality of life as
they approach the end of their life. In a community-based setting, family members and the dying
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client are supported by friends, neighbours and volunteers during their final days and family is
supported after their loss in a culturally safe manner. It is important to note that everyone in the
community is either directly or indirectly affected by the ill person’s death (Cohen & Deliens,
2012). In fact, Cohen & Deliens (2012) argue the unfortunate circumstance that “the manner in
which people die and the quality of dying has blatantly been neglected as a priority of public
health, partly because death and dying, in all its aspects, have rather been regarded as
antonymous to health and a failure of health care” (Cohen & Deliens, 2012).
From a public health perspective, common genetic predispositions for chronic conditions
such as, cancers, diabetes, cardiovascular disease, mental health and asthma (World Health
Organization, 2014) along with poor living conditions and communicable disease must also be
considered as an underlying issue and social inequality in First Nations communities. That being
said, Mikkonen & Raphael (2010) argue that the social determinants of health are shaped by
public policy decisions and have more of an influence on health than an individual person’s
genetic predisposition.
Summary
An analysis of existing literature provided a solid foundation for investigating journey
mapping as a strategy for designing a care pathway for Naotkamegwanning First Nation.
Exploration of Aboriginal health status and the social determinants of health affecting Aboriginal
Canadians identified geographic, socioeconomic and technological barriers to accessing
provincial and territorial health services. The provision of health services identified several
jurisdictional issues for people living in First Nations Communities. A historical review of the
literature related to both journey mapping and value stream mapping, provided a foundation and
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37
strategy for approaching these jurisdictional issues and leveraging relationships with external
health care providers.
Examination of the literature on researching from an Indigenous paradigm provided the
basis for me to self-disclose and acknowledge that I, as a non-Indigenous Canadian immigrant,
bring my subjective self to the research. The Indigenous paradigm provided an appropriate
foundation to investigate this case study using a participatory action research methodology.
The public health approach to palliative care proved as an emerging strategy that is
suitable for the community-based approach to care in First Nations communities. This strategy
calls upon public health policy makers to consider community capacity development models and
increase the palliative care service provision in First Nation’s communities.
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Chapter three: Background to the thesis research
Improving end-of-life care in First Nations (EOLFN) communities research project
This thesis research was nested within a five-year (2010-2015) participatory action
research project entitled “Improving End-of-Life Care in First Nations (EOLFN) Communities:
Generating a Theory to Guide Program Policy and Development.” The EOLFN project was
funded by the Canadian Institutes of Health Research (CIHR) and was conducted with four First
Nations community partners: Naotkamegwanning First Nation, Fort William First Nation, Peguis
First Nation and Six Nations of the Grand River Territory. This thesis case study will focus on
the Ojibway community of Naotkamegwanning First Nation, also known as Whitefish Bay,
which is located in the Lake of the Woods region of Northwestern Ontario in the Treaty 3
territory.
The overall goal of the EOLFN project was to improve the end-of-life care in these four
First Nations communities through developing palliative care programs and creating a culturally
appropriate theory of change to guide palliative care program and policy development nationally.
The six specific research objectives of the EOLFN project were to: (1) document Indigenous
understandings of palliative and end-of-life care as a foundation for developing palliative care
programs, (2) generate a culturally appropriate theory of change in First Nations communities
based on a 4-phase model of community capacity development, (3) create an evidence-based tool
kit of strategies and interventions to implement palliative care programs in First Nations
communities, (4) empower First Nations health care providers to be catalysts for community
change in developing palliative care and supportive policy frameworks, (5) improve the capacity
within First Nation communities by developing palliative care teams and programs, and
strengthening linkages to regional palliative care resources, and (6) develop knowledge and skills
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in participatory action research (PAR) methodology for First Nations community members,
Graduate Students and health professional trainees. The development and implementation of the
journey mapping was one of approximately twenty-five strategies and interventions implemented
in and by the four First Nations communities.
The EOLFN research project followed the principles of Ownership, Control, Access and
Possession (OCAP®
6
), which are sanctioned by the First Nations Information Governance
Committee and the First Nations Regional Longitudinal Health Survey, to ensure self-
determination in all research concerning First Nations people (First Nations Centre, 2007).
PAR is the methodology that guided the EOLFN research project and the thesis research.
The knowledge in the EOLFN research was co-created by the researchers and participants and
included regular member checking and dissemination to all of the stakeholders and participants.
The PAR approach was appropriate because it recognized the expertise of First Nations
community members and promoted integration of community values and traditions into the
palliative care programs that were developed at the grassroots level (S. Kemmis & R.
McTaggart, 2005). The ongoing cycle of PAR included each First Nations community partner
identifying a problem or issue related to developing palliative care, taking action to address it,
and reflecting on the experience and outcome. Change was created through an incremental
process of tackling more and more of the problems or needs identified by the participants and
building on growing achievements. This ongoing cycle of PAR integrated evaluation within the
research process throughout the five year EOLFN research project.
Conceptually, the EOLFN research was guided by the five-phase community capacity
development model “Process of Palliative Care Program Development” as shown in Figure 1.
6
OCAP® is a registered trademark of the First Nations Information Governance Centre (FNIGC). For more
information on OCAP®, please visit: www.FNIGC.ca/OCAP.
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Figure 1. Process of Palliative Care Program Development
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41
The model, developed by the First Nations participants and EOLFN researchers, includes
five phases involved in developing a local palliative care program (EOLFN Research Team,
2015, p. 12). As described in the Developing Palliative Care Programs in First Nations
Communities: A Workbook (2015): the phases are: (1) grounding the program in community
values and principles, (2) having community readiness, (3) experiencing a catalyst, (4) creating
the palliative care program, and, (5) growing the palliative care program.
Beginning at the bottom, each phase needs to build on the phase below; however, work in
each phase is continuous and ongoing. The rate of progress varies. Communities can move
forward or backward in the phases depending on unique circumstances within each community.
This thesis occurred in phase four of the capacity development model because the community
had completed much of the developmental work during the first two years of the EOLFN project.
In a First Nations community context, the theoretical framework starts with “Grounding
the development in community values and principles.” The model recognizes that values and
principles of the individual, family, community and culture vary and that each First Nations
community is unique.
Phase two, “Having community readiness for palliative care,” is where the metaphor of
tree roots symbolizes the starting point and foundation of the palliative care program. There are
six characteristics that influence community readiness for developing the community’s local
palliative care program: (1) local leadership, (2) vision for change at the community level, (3)
empowerment, (4) health services, (5) collaboration, and, (6) community infrastructure.
At phase three, a community catalyst, either a person or event, occurs and generates
motivation for a desired change in the current approach to palliative care. In the EOLFN project,
a local health care provider was the catalyst leading the change and creation of the palliative care
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42
program. In the EOLFN research, this health care provider was referred to the Community Lead
and liaised between the community and EOLFN Research Team. The Community Lead engaged
community members to assemble a Project Advisory Committee. A Project Advisory Committee
was developed in each community to ensure local control and lead the implementation of the
EOLFN research project with the help of a paid Community Lead hired by the Project Advisory
Committee and paid by the research grant. The Project Advisory Committee was also
responsible for ensuring that the EOLFN research project addressed the needs of the community
and was respectful of the culture.
After this catalyst occurs, phase four begins. The Project Advisory Committee and the
Community Lead began “Creating the palliative care program.” This involved conducting a
palliative care needs assessment with Elders, community members, and internal and external
health care and social service providers. The needs assessment results and recommendations
provided guidance to the Project Advisory Committee so they could focus and prioritize the
development of their palliative care programs specific to their identified community needs, and
form a Leadership Team to undertake implementation of the palliative care initiatives.
The Leadership Team included the Community Lead, Community Facilitator, members of the
Project Advisory Committee, Elders, community members, and other representatives that are
dedicated to creating the palliative care program and moving it forward. The Leadership Team
in Naotkamegwanning selected journey mapping to design the palliative care pathway as one of
their top priorities in creating their palliative care program.
During phase five, the Leadership Team focused on “Growing the palliative care
program” by extending beyond the community. At this point, the palliative care program
includes internal and external health care and social service providers, Elders, community
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members, and family members and leadership that continue to drive the process of change. The
new palliative care team, with the support of the Leadership Team, grows the palliative care
program by strengthening community relationships, building external linkages, providing care,
promoting education, and advocating for individuals and families. The journey mapping process
engaged these providers and community members in designing the palliative care pathway to
best meet the needs of the client.
Naotkamegwanning Community Needs Assessment Results.
Based on the needs assessment data collected from community members, the majority of
residents in Naotkamegwanning First Nation would prefer to die at home if services and
community supports were available and adequate (EOLFN Research Team, 2013b). Having the
option to die at home allows access to family and friends as well as to cultural and spiritual
resources. The recommendations from the needs assessment were formulated with the intent to
provide people a choice to die at home in the community by creating improved access to high
quality, culturally appropriate palliative care services at home. At the time of the needs
assessment in 2012, many residents of Naotkamegwanning First Nation did not feel they had the
choice to die at home. Over the last several years, all of the community members who were very
sick with a progressive chronic or terminal illness and had received Home and Community Care
died in the hospital, even though many would have wished to stay at home for care. End of life
hospitalizations typically lasted the last three or four weeks of life.
The key recommendations of the needs assessment were:
1. Continue to support the development of a culturally relevant palliative care program
in the community that incorporates cultural practices, traditions, teachings, and
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education related to death, dying, palliative care, access to and available services, and
eligibility requirements;
2. Continue to support the local palliative care team in their efforts to identify and
address unmet community palliative care needs, by advocating for required resources
and solutions within the community and externally; and,
3. Provide cultural competency education to non-Aboriginal external health care
providers who provide care to the residents of Naotkamegwanning First Nation.
Additional recommendations for practice, policy, and education were also provided as a
means to move forward with the development and formalization of the community’s palliative
care program and to improve quality and access to palliative care (EOLFN Research Team,
2013b).
This thesis research arose directly out of Naotkamegwanning’s recommendations for
practice, which were:
1. To further develop the palliative care program in a manner that is community
designed and driven, culturally relevant, embedded with values and encourages the
participation of family, community members, volunteers, and external community
partners who can support their work;
2. To integrate the palliative care program and services into existing community health
services at the primary care level and incorporate the needs of clients of all ages with
a wide range of chronic, progressive and life limiting diseases;
3. To organize case conferences for all Naotkamegwanning clients who would benefit
by palliative care to improve communication and clarify accountability for service
delivery to avoid misunderstandings and conflict. It was recommended that the case
A CASE STUDY OF JOURNEY MAPPING
45
conferences include family members, members of the palliative care program,
Naotkamegwanning health care providers and members from external health services
where relevant (e.g. Community Care Access Centres, cancer centres, palliative care
teams); and
4. To respect that the circle of care in First Nations communities may include many
people. It was recommended that the informed consent processes, that guide the
sharing of information used in the palliative care program, be revised to ensure the
consent processes proactively invite the client to identify all family and community
members who may attend case conferences and have access to personal health
information.
Following the needs assessment recommendations, the Naotkamegwanning Leadership
Team prioritized the initiatives to undertake as they began establishing their palliative care
program. One initiative selected as a priority intervention was to create the care pathway for a
Naotkamegwanning client in need of palliative care. This thesis analyzes the journey mapping
process and the lessons learned from that initiative.
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46
Chapter four: Case study description
Journey mapping introduction
As part of the intervention phase of the EOLFN research project, a series of four journey
mapping workshops were conducted with Naotkamegwanning First Nation community members,
internal and external health care and social service providers and the EOLFN Research Team.
Going forward in this thesis, these participants are defined as the stakeholder working group, or
stakeholders. There were two key stakeholders from the Leadership Team that guided the
journey mapping process; the Community Lead and the EOLFN Community Consultant. The
Community Lead was also the Home and Community Care Program Coordinator. The
participants involved in the journey mapping workshops are described in Table 1.
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Table 1. Overview of journey mapping participants
Team name/Title Member(s)/description
Stakeholder
Working Group
All participants involved in the journey mapping workshops
In this thesis, the term Stakeholder Working Group will be used to refer to
the collective group of journey mapping workshop participants.
Naotkamegwanning
Clinical Team
Internal and external health care providers that provide palliative care in
the community.
Naotkamegwanning
Leadership Team
Elders, knowledge carriers, Chief and Council, the Community Lead, the
Community Consultant, and internal health care providers that provide
palliative care in the community.
Home and
Community Care
Program
Coordinator
(EOLFN
Community Lead)
The Community Lead was also the Naotkamegwanning Home and
Community Care Program Coordinator (EOLFN Community Lead).
Going forward in this thesis, the Community Lead is identified as the
Home and Community Care Program Coordinator (EOLFN Community
Lead).
EOLFN
Community
Consultant
Due to the multiple roles the Home and Community Care Program
Coordinator (EOLFN Community Lead) held and her heavy workload, the
EOLFN project hired a Community Consultant to assist her with the
development of the community’s palliative care program. The EOLFN
Community Consultant was a retired registered nurse that had previous
palliative care program development experience in rural and First Nations
communities in Northwestern Ontario, including Naotkamegwanning.
EOLFN Research
Team
The EOLFN Research Team members that were directly involved in the
journey mapping workshops included the Principal Investigator (M.L.
Kelley), Project Manager (H. Prince), Interim Project Manager (J.
Marcella), Research Coordinator (M. Wawia), and me in dual roles as a
Research Assistant and Graduate Student Trainee.
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Journey mapping, in the context of this thesis, refers to a process to improve the
coordination and integration of care for clients in First Nations communities as they access
services from multiple programs and health care providers. It is done using a workshop format
that brings together internal and external health care providers, Elders, and community
leadership. It involves in-depth discussion of how First Nation community members transition
through the health care system as they approach end of life, and identifies obstacles and solutions
to improve service integration. (EOLFN Research Team, 2015)
The outcome of the journey mapping process is a care pathway. First Nations palliative
care pathway, or path of care, refers to a diagram or map that outlines the expected care for
clients who would benefit by receiving palliative care, including the appropriate timeframes for
different phases of palliative care. The care pathway is created by a group of involved care
providers during a series of journey mapping workshops in order to become a resource that will
guide care for individuals progressing through their care and treatment. The care pathway
focuses on providing clients the best palliative care and most positive outcomes as they move
between different health care providers and organizations. (EOLFN Research Team, 2015).
The Wiisokotaatiwin Program is what the Naotkamegwanning Leadership Team chose
to call their local palliative care program as opposed to using the term Palliative Care Program.
The Ojibway word “Wiisokotaatiwin”, as described by the community members, means “taking
care of each other” and signifies “doing what we’ve always done, back in the day.”
Wiisokotaatiwin was selected because the word palliative is not culturally acceptable in
Naotkamegwanning and it is not culturally appropriate to plan for or discuss death.
Journey mapping workshops
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Planning for journey mapping began in June of 2013 and four journey mapping
workshops were conducted from August 2013 – October 2014. From October – December 2014
a work plan was developed to implement the developed palliative care pathway. A timeline
document, including a summary of the journey mapping workshops including dates, times, and a
photograph of each location is outlined in Figure 2. The timeline also indicates the work that the
community members of Naotkamegwanning completed between the workshops in order to
prepare for the next workshop.
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Figure 2. Naotkamegwanning journey mapping workshops timeline
August 2013
Half day workshop
Naotkamegwanning Health Access Centre
Naotkamegwanning First Nation
Journey mapping workshop #1
Initial engagement of stakeholder partners
Presented the results of the community needs
assessment
Announced the new palliative care program
name: Wiisokotaatiwin (taking care of each
other)
Established commitment from the stakeholders
to move the care path intervention forward
February 2014
Two-day workshop
Best Western Lakeside Inn
Kenora, Ontario
Journey mapping workshop #2
Introduced lean concepts and value stream mapping
Six sigma black belt consultant facilitated the
workshop
Lean terminology was not culturally appropriate and
was abandoned, shifted to an open discussion that
embraced a two-eyed seeing perspective
Discussed in detail the gaps and barriers in
establishing the palliative care pathway
Identified communication breakdowns and strategies
for improvement
Created a list of service providers involved in the
future state
Composed report and recommended next steps were
provided to the stakeholders
August 2014
Half day workshop
Lake of the Woods District Hospital
Kenora, Ontario
Journey mapping workshop #3
Introduced the nine stages in the palliative care
pathway
Worked through stages one through five building
upon what was identified in previous workshops
Identified the outstanding gaps, barriers and
challenges in implementing the care pathway
Created an action plan and agreed upon next steps
October 2014
Two day workshop
Waasegiizhig Nanaandawe'Iyewigamig
Health Access Centre
Kenora, Ontario
Journey mapping workshop #4
Worked through stages six through nine
which were internal to the community and
culturally focused, dealing with the time
before and following death
Discussed LHIN funding and ideas for
implementing the palliative care pathway
Created the care pathway “circle” diagram
and labeled it the “Wiisokotaatiwin
Program Palliative Care Pathway”
Identified next steps for the leadership
team in moving the care pathway forward
to implementation
Jun. – Aug. 2013
Planning for journey
mapping begins
Aug. 2013 – Jan. 2014
Leadership team develops
the Wiisokotaatiwin
program’s mission and
vision and begins creating
the program guidelines
booklet.
Feb. – Jul. 2014
The leadership team
identifies the nine stages
in the palliative care
pathway.
Aug. – Sep. 2014
Community submits “Health System Improvement Proposal” (H-SIP)
to the NW LHIN and receives funding for a pilot project to address
the gaps in service delivery, equipment and education to implement
the Wiisokotaatiwin Program.
Oct. – Dec. 2014
Work plan is
developed and
agreed to with
stakeholders
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The overall goals of the four workshops were to: (1) discuss the journey for
Naotkamegwanning community members when they are dying and require palliative care, (2)
depict both graphically and textually the current state and desired state of the care pathway, (3)
identify areas for improving communication and service integration amongst health care and
social service providers for the residents of Naotkamegwanning First Nation, (4) create dialogue
about how a resident of Naotkamegwanning First Nation (client) is identified as one that would
benefit by palliative care, and (5) how the client transitions through the health care system during
this journey, including what potential obstacles they experience during their journey.
Each workshop was carefully planned by the Community Lead and research team. In
preparing for the journey mapping workshops, I was responsible for creating the agenda
electronically, formatting and preparing handouts, transporting supplies and equipment, securing
a venue, arranging catering, and coordinating travel for the EOLFN Research Team.
A typical workshop packet consisted of a folder with an agenda, consent forms, an
information letter, and handouts, such as a care path diagram and the community needs
assessment, as shown in Figure 3 below.
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Figure 3. Journey Mapping Workshop Packet Sample
Typical journey mapping workshop supplies included a large roll of paper, different
colour post-it notes, markers, and tape. Equipment included audio recorders, batteries, a laptop,
a projector, and an extension cord.
In the following section, I will describe the steps involved in the journey mapping
process. Within the community, there were social, cultural, spiritual traditions in place, but the
community lacked access to medical care delivered in a way that is integrated with their social,
cultural, and spiritual traditions. Embarking on this series of workshops united the community
members, internal and external health care and social service providers, and the EOLFN
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Research Team to collaboratively create a care pathway for clients in Naotkamegwanning First
Nation who require palliative care.
Workshop one: Introducing the journey mapping process and engaging
stakeholders.
Workshop one was held in Naotkamegwanning First Nation at the Community Health
Centre in August of 2013. The journey mapping workshop was in the afternoon following a
morning session in which the Principal Investigator and Project Coordinator shared the results of
the needs assessment with the community members. During the afternoon, the first journey
mapping workshop took place, which will be described in detail in the following paragraphs.
The day ended with a traditional feast that allowed for some networking amongst participants.
For the afternoon journey mapping session, 14 participants attended, including: the Home
and Community Care Program Coordinator (EOLFN Community Lead), the Community
Consultant, community home care nurses, a visiting community physician (based in Kenora), a
Discharge Planner and Palliative Care Nurse from a Regional Hospital, a Nurse Manager from
the Community Care Access Center, a Nurse Consultant with St. Joseph’s Hospital Telemedicine
program, a Nurse Practitioner from Waasegiizhig Nanaandawe'Iyewigamig Health Access
Centre (WNHAC), and three members of the EOLFN Research Team, i.e. the Principal
Investigator, Project Coordinator, and me in my role as a Research Assistant.
The workshop was facilitated by the Principal Investigator. Based on the needs
assessment data, the EOLFN Research Team created a diagram of the “current state” of the client
experience and the desired “future state” as shown in Figure 4.
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Note: Home journey is referring to an in-home death.
Figure 4. A comparison of the key processes in the path of care for a Naotkamegwanning community member: Current and future
state
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My role in this workshop as a Research Assistant was to document meeting minutes,
including observations and field notes, and then draft a final report. The final report, once
approved by the EOLFN Research Team, was sent via email to all participants that attended the
workshop.
As indicated above, participants received “A framework of the key processes in the path
of care for a Naotkamegwanning community member” (see Figure 4) as a hand out and engaged
in dialogue regarding the current state. The dialogue was intended to introduce the journey
mapping process by beginning to identify areas for improving communication and service
integration amongst health care and social service providers for the residents of
Naotkamegwanning First Nation. In addition, the intention was to begin discussions about how a
client who would benefit by palliative care is identified, how they transition through the health
care system during this journey, and what potential obstacles they may experience during their
journey. The comparison of the current state (green bubbles) and desired future state (yellow
bubbles) as outlined in Figure 4 provided the context and a starting place for the journey
mapping process.
In the current state (the state that existed in the community in August 2013), clients were
identified when they were in a medical crisis and they were transferred to hospital for
assessment. Discharge planning did not systematically include a referral to the community based
health care services and information needed for follow up was not provided. Communication
barriers existed between health care providers internal and external to the community, and
coordination of care was poor. There were no care conferences held in the community.
The discussion in the August 2013 journey mapping workshop focused on how to move
from the current state to future state and where this process would be changed so that clients
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could be identified, assessed and cared for in the community rather than requiring a hospital visit
to initiate palliative care services.
The future state would allow for a home death to be supported if the client chose one. At
the time of this workshop, there had been no expected deaths in the community for at least the
previous four years according to the Home and Community Care Program. All expected deaths
took place in the hospital.
Workshop one accomplished bringing together community members, internal and
external health care and service providers and the EOLFN Research Team for the first time. In
addition, commitment to the journey mapping process from the stakeholders was established and
the group began to identify areas for improving communication and service integration amongst
one another to improve the experience for the residents of Naotkamegwanning First Nation.
At the end workshop one, the stakeholders committed to attending future journey
mapping workshops and understood the purpose of the journey mapping workshops was to
create a palliative care pathway. Because workshop one informed the current state, stakeholders
were aware that future workshops would focus on how to move from the current state to future
state and where the current processes needed to be changed so that clients could be identified,
assessed and cared for in the community rather than requiring a hospital visit to initiate palliative
care services.
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Workshop two: Value stream mapping.
Workshop two took place at the Best Western Lakeside Inn and Conference Centre in
Kenora in February 2014. The workshop was two days and included breakfast and lunch,
allowing for some ‘off-the-clock’ networking amongst participants.
A total of 17 participants attended, including: two Elders, the Home and Community
Care Program Coordinator (EOLFN Community Lead), the Naotkamegwanning Health Director,
a member of the Band Council, the Community Consultant, community nurses, a community
doctor, a Discharge Planner and Palliative Care Nurse from the District Hospital, a Nurse
Manager from the Community Care Access Center, a Nurse Practitioner from the Aboriginal
Health Access Centre and three members of the EOLFN Research Team, including myself; the
Principal Investigator, Project Coordinator, and me in my role as a Research Assistant and
Graduate Student Trainee (as of September 2013).
The workshop was facilitated by a six sigma black belt from the Toronto-based Leading
Edge Group which specializes in lean, six sigma, and process management. Employing someone
specialized in lean was recommended by managers in the regional home care agency as value
stream mapping was being used extensively in health care to improve system efficiency and
effectiveness. Thus, using this process would be credible with regional health care providers.
A selection committee involving the Principal Investigator, the Naotkamegwanning
Home and Community Care Program Coordinator (EOLFN Community Lead), a manager from
the regional home care agency familiar with lean, and the EOLFN Research Project Manager
was formed to choose a facilitator. Two candidates were interviewed via telephone and one was
chosen to provide facilitation and consulting services for this workshop. This particular
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consultant was chosen unanimously as she had expertise in conducting value stream mapping
(VSM) workshops nationally.
The goals of the two day workshop were discussed as a stakeholder working group with
the participants, and a series of six goals were established. The goals included, (1) create a plan,
(2) implement it, (3) document the outcomes, (4) evaluate the process, (5) demonstrate lived
experiences in the community, and (6) bring the findings forward to the NWLHIN. A “desired
future state” flow chart diagram, as shown in Figure 5 was created following this workshop.
This figure was an elaboration of Figure 4 introduced in workshop one.
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Figure 5. Current and Potential Future State
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It was quickly determined by non-verbal communication and lack of participation by
community members that this workshop facilitation style and the VSM terminology being used
was unfamiliar. Half way through day one of the two-day workshop, the Principal Investigator
began to co-facilitate the workshop and introduce a less formal style. At this point progress in
discussing the desired future state ensued.
Stakeholders participated in an interactive session in which they placed sticky notes on
long pieces of paper taped to the wall under various categories such as community strengths and
weaknesses, barriers and facilitators, collaboration and partnerships, and resources and services,
as shown in Figure 6 and Figure 7.
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Figure 6. Workshop #2 interactive session: Community strengths
Figure 7. Workshop #2 interactive session: Community barriers
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On day two, the stakeholder working group began to map out the desired future state,
resulting in a flowchart diagram of the various touch points involved in the desired future state of
the care pathway. Day two concluded with stakeholders brainstorming about the services that
may be required for clients to receive quality palliative care in the community. The group
created a list of 57 services and the current providers, if any, of the listed services, as shown in
Table 2.
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Table 2. List of palliative care services and providers
No. Service Required Current Provider
Proposed
Provider
Reason for
Recommended Change
Strategy: how to deliver
on recommendation
1 Emergency Financial Assistance Band Office Leadership
2 Occupational Therapy Regional home care agency
3 Physiotherapy Regional home care agency
4 Nutritionist Regional home care agency
5 Speech/Language Pathologist Regional home care agency
6 Mobility/Accesibility
Regional home care agency
Band Housing Manager
Community Homecare
7 Social Work
Regional home care agency
Aboriginal health access centre
8 Foot Care
Chirpodist Aboriginal health access centre
Medical Clinic(s)
PSW
Private providers
9 Family Community
10 Traditional Healer
Community Health Services
Individual Families
Aboriginal health access centre
11 PSW Community Homecare
12 Home Support (external house) Community Homecare LTC
13 Client Family Assessmnt
Community Homecare
Community Care Conference Stakeholders
14 Housekeeping Community Homecare/LTC
15 Nursing
Community
Regional home care agency
Nurse Practioner
16 Volunteer
Community/Family Friends
Ontario Works
High School Students
17 Physician
Medical doctors
Specialists - Winnipeg or Thunderbay or
Kenora
Aboriginal health access centre
18 Groceries shopping and delivery Aboriginal health access centre
19 Child Care
Family and Friends
Provincial Works Programs
Daycare
Headstart
Babysitting Course
Elders
20 Respite Care
Family and Friends
Long Term Care homes
21 Translater
Family decision
Elder Support Program
Local hospitals
22 Funeral Services Family preference - Kenora area
23 Lawyer Family preference private
24 Spiritual Support
Family
Community
Traditional
Roman Catholic Sioux Narrows
Mormon Kenora
Mennonite Sioux Narrows
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Due to lack of time, the three columns on the left of the table that address the topics of
proposed provider, reason for recommended change, and strategy on how to deliver the
recommended change involved were not completed. The task of completing this table was
passed along to the Leadership and Clinical Teams that had been formed in Naotkamegwanning
for consideration in moving forward with the future state.
My role as a Research Assistant and Graduate Student Trainee was to document meeting
minutes, including observations and field notes, and then create a final report. The final report
was approved by the EOLFN Research Team and sent via email to all participants that attended
the workshop.
In addition, the Leading Edge consultant also provided a report to the EOLFN Research
Team. This report included an overview of VSM and key concepts, barriers and facilitators that
occurred during the workshop, a series of diagrams related to the current and future state, as well
as a list of potential providers and their potential roles in the desired future state. The report
concluded with a list of recommendations for next steps in moving forward with the desired
future state.
Workshop two reunited existing stakeholders and introduced new stakeholders that were
not present in workshop one, creating a more robust group of community members, internal and
external health care and service providers and EOLFN Research Team members. The list of
palliative care services and providers was identified by participants as useful for moving ahead.
In addition, the hospital shared their palliative care assessment forms with the group, which
provided ideas on how to adjust the in-home assessment form used by Home and Community
Care.
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Workshop three: Finalizing the care path and next steps.
Workshop three took place at the Lake of the Woods District Hospital in Kenora in August 2014
and via Ontario Telemedicine Network (OTN) to include distance participants from Thunder Bay.
Remote participation by OTN was a unique component of this workshop. The workshop was a half-day
in the afternoon.
A total of 20 participants attended, so I have listed them in Table 3 below.
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Table 3. Workshop Three Attendees
Role Organization/Agency name
Elder Naotkamegwanning First Nation Leadership
Team
Home and Community Care Program
Coordinator (EOLFN Community Lead)
Naotkamegwanning Home and Community
Care Program and EOLFN Research Team
Health Director Naotkamegwanning Home and Community
Care Program
Member with health portfolio Naotkamegwanning Chief and Council
Community Health Representative Naotkamegwanning Home and Community
Care Program
EOLFN Community Consultant EOLFN Research Team
Community Nurse Manager Community Nursing Provider (FNIHB)
(professional nursing agency providing
services in the community)
Telemedicine Nurse Regional Telemedicine program from hospice
unit in Thunder Bay hospital
Palliative Care and telemedicine Manager Regional Health Sciences Centre & Cancer
Centre in Thunder Bay
Aboriginal Patient Navigator Regional Health Sciences Centre/Cancer
Centre in Thunder Bay
Discharge Planner District Hospital in Kenora
Palliative Care Nurse District Hospital in Kenora
Director Regional Community Care Access Center in
Thunder Bay
Program Director Aboriginal Health Access Centre (AHAC)
Kenora
Nurse Advisor with the Home and Community
Care Portfolio
First Nations Inuit Health Branch (FNIHB),
northern Ontario
Principal Investigator EOLFN Research Team
Interim Project Manager EOLFN Research Team
Research Coordinator EOLFN Research Team
Research Assistant and Graduate Student
Trainee (me)
EOLFN Research Team
The workshop was facilitated by the Principal Investigator, the Community Consultant,
and the Home and Community Care Program Coordinator (EOLFN Community Lead) from
Naotkamegwanning. My role as a Research Assistant and Graduate Student Trainee was to
document meeting minutes, including observations and field notes, and then create a work plan
of follow up actions for the key stakeholders.
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The goals of the workshop were to bring partners together, discuss and agree upon next
steps and share the high level care path, as shown in Figure 8.
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1. CLIENT IS IDENTIFIED
2. CLIENT IS REFERRED
3. COMPREHENSIVE ASSESSMENT
4. CASE CONFERENCE AND DEVELOPMENT OF CARE PLAN
5. COORDINATED HEALTH SERVICES DELIVERY
6. PLANNING FOR PASSING AT HOME
7. CLIENT PASSES
8. FOLLOW-UP AND BEREAVEMENT SUPPORT
9. CASE CLOSURE
Figure 8. Nine stage care path flowchart
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Workshop three contributed to creation of the care pathway in that it reunited the
stakeholders to introduce the care path flowchart and discuss and agree upon next steps. The
linear care path (Figure 8) had been developed by the Home and Community Care Program
Coordinator (EOLFN Community Lead), the Community Consultant, and the EOLFN Research
Team based on the previous workshops and needed to be validated by the other stakeholders. In
addition, the roles and activities of each organization at each step needed to be detailed and
discussed so that a clear plan of who was responsible, timing of care, and how activities should
be coordinated, could be solidified. This included individuals taking responsibility for identified
tasks and committing to be accountable for the progress. For example, the Home and
Community Care Program Coordinator (EOLFN Community Lead) and Community Consultant
partnered with a regional discharge planner to revise the process so that the Home and
Community Care Program was informed in advance so that equipment and services could be
arranged prior to the client being to discharged. In addition, the Home and Community Care
Program Coordinator (EOLFN Community Lead) and Community Consultant also worked with
the community’s professional nursing agency and a nurse from a regional hospital to revise the
palliative care assessment form so questions were similar in the community and hospital, but not
duplicated. It was during these exchanges that the stakeholders began to learn about, and
understand one another’s roles.
It was during workshop three that the community informed the external partners that they
would be involved in stages one through five of the care pathway only. Stages six through nine
would be private to the community and be these stages would be discussed internally with the
leadership team.
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Workshop four: Including cultural components in the care path.
Workshop four took place at Waasegiizhig Nanaandawe'Iyewigamig Health Access
Centre (WNHAC) in Kenora in October 2014 as part of the community’s Leadership Team
meeting. The workshop was held over two days with nine members of the Leadership Team. I
also attended the meeting with prior approval from the Leadership Team. There were no
external health care providers at this meeting as the focus was on the internal community roles
and activities.
The workshop was facilitated by the Community Consultant. My role as a Research
Assistant and Graduate Student Trainee was to assist the Leadership Team with creation of the
care path. The Leadership Team’s administrative assistant was present to document meeting
minutes and recorded the dialogue on an audio recorder. At times, I assisted the Community
Consultant with facilitation. I also documented field notes and observations and took
photographs.
The goal of the workshop was to review what had been done over the previous year with
all of the stakeholders and ensure cultural components, beliefs and traditions were incorporated
into all of the stages of the care path. Of the nine stages involved in the care path, the Leadership
Team identified stages 6-9 as private to the community, thus they wanted to discuss the details of
these stages only within the Leadership Team, not involving the entire stakeholder working
group. As a team, the Leadership Team created Figure 9 called “The Nine Stage
Wiisokotaatiwin Program Care Path.”
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Figure 9. The Nine Stage Wiisokotaatiwin Program Care Path
Client is
identified
Client is
referred
Comprehensive
assessment
Case
conference and
development of
care plan
Coordinated
health services
delivery
Planning for
coming home
Client has
passed on
Follow-up and
bereavement
support
Case closure
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Workshop four contributed to the lessons learned in creation of the care pathway in that it
was private to the community involving only members of the Leadership Team, the Community
Consultant and me as a Graduate Student. There were no external health care providers at this
meeting as the focus was on the internal community roles and activities. It was during this
workshop that the care pathway evolved from a linear process to a circular diagram.
Following the fourth journey mapping workshop, the stakeholder work plan was
completed by me, the Community Consultant and the Home and Community Care Program
Coordinator (EOLFN Community Lead) based on the workshop minutes. It was then reviewed
and approved by the EOLFN Research Team, and sent via email to key stakeholders from the
stakeholder working group. The details of each organization’s role and their tasks were
discussed in series of teleconferences over a couple of months, facilitated by the Principal
Investigator, Project Manager, and Community Consultant. My role during these
teleconferences was to take minutes and update the work plan. Finalizing the detailed work plan
was a critical step in making the role of each organization specific and clear in order to
implement the new care pathway for clients. It also allowed each organization to see how their
role integrated with the roles of others in the overall care plan.
Purpose and rational for this research
This particular journey mapping intervention, conducted in Naotkamegwanning First
Nation, was nested within the five-year PAR research project that aimed to improve the quality
and access to palliative care in First Nations communities. Based on the results of the
Naotkamegwanning needs assessment, there was an expressed wish by people living in the
community to receive palliative care at home and have the option to die at home. Thus, the
EOLFN Research Team created and implemented the series of four journey mapping workshops,
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as described in the previous section. Analyzing the lessons learned during the unique journey
mapping intervention, which was conducted collaboratively by the Naotkamegwanning
Leadership Team and the EOLFN Research Team from 2013-2014, is the focus of my thesis
research.
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Chapter five: Methodology
Study purpose and research questions
In conjunction with a participatory action research study, the primary purpose of this
thesis research was to analyze the journey mapping process undertaken in Naotkamegwanning to
create a care pathway that would support community members who choose to die at home. The
desired outcome was to share the lessons learned and provide recommendations for palliative
care journey mapping in First Nations communities for the future.
The research questions guiding this thesis are:
1. How effective was the journey mapping process to create the care pathway for integrated
palliative home care for Naotkamegwanning community members who choose to die at home?
2. What learnings and promising practices have emerged from this case study that can inform
development of an EOLFN workbook tool on journey mapping for use by other First Nations
communities?
More specifically, this research will describe the importance of each of the roles involved
in the journey mapping workshops and the contributions of the stakeholder working group. It
will analyze how the four journey mapping workshops contributed to creating the care pathway
by exploring the facilitators and barriers, learnings and promising practices, and key catalysts.
Findings emerged from my analysis of primary and secondary data collected over two years.
Ethical considerations in Indigenous health research
This research was guided by the principles of OCAP® (Ownership, Control, Access and
Possession), outlined in Table 4 below, which are sanctioned by the First Nations Information
Governance Committee (2016). These principles aim to ensure self-determination in all research
concerning First Nations people.
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Table 4. Definitions and principles of ownership, control access and possession (OCAP®)
7
Ownership
Refers to the relationship of a First Nations community to its cultural
knowledge, data and information. The principle states that a community or
group owns information collectively in the same way that an individual
owns their personal information. It is distinct from stewardship. The
stewardship or care taking of data or information by an institution that is
accountable to the group is a mechanism through which ownership may be
asserted.
Control
The aspirations and rights of First Nations Peoples to maintain and regain
control of all aspects of their lives and institutions extend to research,
information and data. The principle of control asserts that First Nations
Peoples, their communities and representative bodies are within their rights
in seeking to control all aspects of research and information management
processes which impact them. First Nations control of research can include
all stages of a particular research project – from conception to completion.
The principle extends to the control of resources and review processes, the
formulation of conceptual frameworks, data management and so on.
Access
First Nations Peoples must have access to information and data about
themselves and their communities, regardless of where it is currently held.
The principle also refers to the right of First Nations communities and
organizations to manage and make decisions regarding access to their
collective information. This may be achieved, in practice, through
standardized, formal protocols.
Possession
While ownership identifies the relationship between a people and their data
in principle, possession or stewardship is more literal. Although not a
condition of ownership per se, possession (of data) is a mechanism by which
ownership can be asserted and protected. When data owned by one party is
in the possession of another, there is a risk of breech or misuse.
This is particularly important when trust is lacking between the owner and
possessor.
From: Snarch, B. (2004). Ownership, Control, Access, and Possession (OCAP®) or Self-
Determination Applied to Research: A Critical Analysis of Contemporary First Nations
Research and Some Options for First Nations Communities. Journal of Aboriginal Health,
1(1): 80–95. Also in Brazil, K. (2012).
Design
As discussed, this thesis was nested within the EOLFN research project. The overall
EOLFN project utilized a comparative case study design (of four communities), adopted
community capacity development as its theoretical perspective, and a PAR methodology. This
7
OCAP® is a registered trademark of the First Nations Information Governance Centre (FNIGC). For more
information on OCAP®, please visit: www.FNIGC.ca/OCAP.
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thesis research focused on one First Nation Community in the EOLFN project,
Naotkamegwanning First Nation, and one intervention that the community undertook, journey
mapping to design a palliative care pathway. The cyclical process of PAR (Lewin, 1946;
McTaggart, 1997), namely, planning, acting, observing, and reflecting, were integrated into the
overall EOLFN research. This allowed me to focus my thesis research on the relevant cycles of
PAR, so I could study how things were done, why they were done the way they were, what
changed along the way, and what, if anything could have been done differently.
I used an instrumental case study design (Stake, 1998), embraced an Indigenous
paradigm as the theoretical perspective, and a PAR methodology (Kemmis & McTaggart, 2005).
Consistent with case study design and the principles of PAR, a variety of data and data collection
methods were used such as field notes and observations of the workshops, document review, a
community focus group, and an external stakeholder online survey. In each case, a form of data
collection was chosen that was most appropriate to the goal, context and participants.
In an instrumental case study, as described by Stake (1998):
A particular case is examined to provide insight into an issue or refinement of theory.
The case is of secondary interest; it plays a supportive role, facilitating our understanding
of something else. The case is often looked at in depth, its contents scrutinized, its
ordinary activities detailed, but because this helps us pursue the external interest. The
case may be seen as typical of other case or not (p. 88).
In this thesis research, the case that was analyzed is defined as the entire journey mapping
process in Naotkamegwanning and the activities that took place to create the care pathway.
To study the case, multiple forms of data were analyzed. Existing qualitative data in the
form of researchers’ field notes, observations, photos, documents (meeting minutes and summary
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reports) and video recordings were collected during the four journey mapping workshops. After
the completion of the four journey mapping workshops, primary data collection for the thesis
included a focus group with community members which intended to capture participants’
perceptions of the outcomes of the journey mapping process, and an online survey with the
EOLFN Research Team and health care providers who were external to the community but
provided services in Naotkamegwanning.
A focus group with community members and an on-line survey with the EOLFN
Research Team and were selected as the appropriate methods for data collection based on
acceptability of the method to the participants, the size of each participant group, and to achieve
the highest participation or response rates from each group.
The community had a Leadership Team meeting scheduled as a two-day retreat in April
of 2015, at which time the EOLFN Project Manager contacted the Home and Community Care
Coordinator/Community Lead to ask if it was appropriate to conduct a focus group about the
journey mapping experience during the retreat. The Home and Community Care
Coordinator/Community Lead agreed that it would be an appropriate for me to come to the
Leadership Team retreat during that time and conduct a focus group The Leadership Team
membership was no more than ten, so the conducting a focus group was also appropriate for the
size group. In addition, some of the community members that were involved in the focus group
did not have computer or internet access, were not tech savvy, or they did not read English;
therefore an on-line survey was not appropriate. Furthermore, the EOLFN research team had
learned during the community needs assessment, that when conducting paper survey data
collection in the community required continued presence in the community, going door-to-door,
which was not feasible.
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An on-line survey was selected as the most appropriate method for the EOLFN research
team and the external health care providers because it was often difficult to get the entire group
together based on varying schedules and locations. An on-line survey gave the participants the
opportunity to respond at their convenience, leave the survey and finish it later, not have to
travel, and it was less time consuming for them.
Embedded throughout this research, are the principles of the Indigenous paradigm
outlined by Atkinson (2001) as discussed earlier in the literature review chapter. Each of these
principles ensure that I conducted my research in an ethically responsible and culturally safe
manner, while respecting Indigenous ways of knowing (Atkinson, 2001; Wilson, 2008).
Additional ethical considerations are discussed later in the Research Ethics Board and Ethics
Procedures section.
Understanding the community context of the journey mapping
Stake (1998) indicates the importance of describing the setting in which the case occurs
so that the findings can be understood and their applicability can be assessed in other contexts.
This includes the physical setting and the socio-cultural influencers on the case. (Stake, 1998).
The community context for this research is the Ojibway community of
Naotkamegwanning First Nation (also known as Whitefish Bay), which is located in the Lake of
the Woods region of Northwestern Ontario in the Treaty 3 territory, as shown by Google Maps
(2014) in Figure 10 below.
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Figure 10. Naotkamegwanning First Nation (Whitefish Bay) Map
(https://www.google.ca/maps/place/Naotkamegwanning+First+Nation+%28Whitefish+Bay+First+Nation%29/@49.2210023,-
91.681051,8z/data=!4m2!3m1!1s0x52bdced49415d4c5:0xd4d72b9a6706301f)
Northwestern Ontario, Canada
Northern Minnesota, USA
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The community has year-round road access and an ice road in the winter. The nearest
urban center, the town of Kenora, has a population of approximately 15,348 (Statistics Canada,
2011b), and is 96 kilometers to the north. Of the l,208 registered band members, 712 live on-
reserve and 496 live outside of the community.
Naotkamegwanning community members take pride in keeping their Anishinaabe
cultural practices, beliefs, and traditions strong. Many of the people continue a connection with
the land and maintain a lifestyle that includes fishing, hunting and harvesting of wild rice. Nearly
half of the residents are able to speak Ojibway and the importance of passing on teachings,
language and cultural practices are evident in their delivery of programs and services within the
community (EOLFN Research Team, 2012).
Naotkamegwanning has a number of community-based programs and services that are
focused on culture such as, a Head Start program through grade 12 schooling, an Elders Centre
for supportive housing, a health centre offering clinical care, a medical service with ambulatory
and paramedic services, and a women’s shelter. Treaty #3 Police Services and Family Services
also have offices within the community. In addition, there is a traditional roundhouse and pow
wow grounds in the community (EOLFN Research Team, 2012).
As of 2013, approximately 5% or 36 members are seniors over 65 years of age. In terms
of the aging and health of Naotkamegwanning’s residents, the leadership and service providers
are responsive to the changing needs of the Elders. The role of the family to offer support for
their Elder is encouraged. In 2007, the integration of the Long Term Care Program and the
Home and Community Care Program created the current Community Care Program.
Approximately thirty personal support workers, home makers and nurses are employed by the
program, mostly part-time. Although there is fluctuation in the caseload, staff care for about
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forty clients a month who are mostly Elders. This integrated model of care for Elders and people
living with disabilities is a single point of access and customized care plans for those requiring
service within their homes or in the Elders Centre. Most people receiving support live
independently in their own homes. Elders are a vital source of information and guidance on the
many programs, services and governance within Naotkamegwanning First Nation (EOLFN
Research Team, 2012).
The Naotkamegwanning Home and Community Care Program and staff are the drivers of
change within the community to create a palliative care program, including undertaking the
journey mapping process. In particular, the Home and Community Care Program Coordinator
(EOLFN Community Lead) Maxine Crow has provided leadership throughout the journey
mapping process. She chairs a community Leadership Team of six people that include Elders, a
member of the Band Council, and other community service providers (EOLFN Research Team,
2012).
The regional context of the journey mapping.
The North West region of Ontario, commonly referred to as Northwestern Ontario,
includes the Districts of Thunder Bay, Rainy River, and Kenora. Within the North West region,
the North West Local Health Integration Network (NWLHIN) is responsible for overseeing the
integration and coordination of local health services to make it easier for clients to access
necessary care (Ontario Local Health Integration Network, 2014). In addition, the NWLHIN is
responsible for allocating funding for the following health services in Northwestern Ontario:
hospitals, Community Care Access Centres, long-term care homes, community support service
organizations, community health centres, and community mental health and addictions agencies.
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Please see Figure 11 for the NWLHIN catchment area (Ontario Local Health Integration
Network, 2011).
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Figure 11. NWLHIN catchment area map
(Ontario Local Health Integration Network, 2011)
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According to the NWLHIN website (2014), there are several rural and remote small
towns and First Nations communities spread throughout the region. In fact, the NWLHIN has
the largest proportion of Indigenous Peoples (19.2%) of all Ontario LHINs (Ontario Local Health
Integration Network, 2011). Due to the geographic spread of these towns and communities, there
are many challenges in planning, delivering and accessing health services (Ontario Local Health
Integration Network, 2011). Within the Kenora District, Naotkamegwanning residents have
access to the following provincial health services: Lake of the Woods District Hospital,
Waasegiizhig Nanaandawe'Iyewigamig Health Access Centre (WNHAC), and the Northwest
Community Care Access Center (NWCCAC).
Participant recruitment and inclusion criteria
Participants for the journey mapping have been engaged in the EOLFN project since
August 2013 and at that time consented to be part of this case study. Consistent with Creswell
(2013), three considerations were employed in the initial participant recruitment and inclusion
criteria process: (1) selection of sampling strategy, (2) participants in the sample, and (3) sample
size (Cresswell, 2013).
Purposeful sampling was selected, because the purpose of the thesis research is to
understand what happened during the creation of the care pathway, determine if the journey
mapping process has been effective in creating the care pathway, and recommend promising
practices to other First Nations communities. Therefore, all stakeholders that participated in the
journey mapping workshops were appropriate participants in this thesis research. This included
Naotkamegwanning Elders, community members, the EOLFN Research Team, internal health
care providers, and external health care providers who work in regional health services that
provide health care to residents of Naotkamegwanning.
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Of the four journey mapping workshops, attendance varied from 13 to 24 attendees. All
participants received an information letter and provided signed consent to participate in the
EOLFN research project. At the end of the final workshop, participants were verbally invited to
participate in a follow-up data collection for my thesis in the form of a focus group for
community members and on-line survey for health care providers and EOLFN Research Team
members. The overall consensus of workshop participants was that they would like to
participate in the follow-up data collection process. This led to a sample size of n=26
participants for this thesis research.
Focus group participants.
In April 2015, Naotkamegwanning community members (n=12) were invited to
participate in a semi-structured focus group at the time and location convenient to the
participants.
Please see Appendix A for the focus group information letter, Appendix B for the focus
group guide and Appendix C for the Lakehead University Research Ethics Board (REB)
approval letter.
Survey participants.
From June – August 2015, internal and external health care providers (n=13) and the
EOLFN Research Team (n=3) were invited to complete an online survey that included 14 rating
scale questions and nine open-ended questions.
Additional details regarding the focus group and survey analysis and findings are in
sections and chapters that follow, respectively.
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Research Ethics Board and ethics procedures.
This research fell under the auspices of the larger EOLFN project, which was originally
approved by the Lakehead University REB in 2010. Naotkamegwanning has no research ethics
board, however, willingness to participate in the overall EOLFN project was initially sought in
2005 before the project began from the Chief and Council of Naotkamegwanning, the Elders and
community members. At that time, the Elders and community members agreed to be part of the
palliative care project, its interventions and sub-studies, which includes this thesis research.
Furthermore, prior to or during the journey mapping workshops, all potential participants
received a verbal explanation of the overall study and an EOLFN information letter that is
attached in Appendix D. Participants all provided free, prior and informed consent with
signature as part of the EOLFN project. Please see Appendix E for the EOLFN informed
consent form.
The majority of the data included in this thesis were collected during the four journey
mapping workshops and community member focus group. I was employed as an EOLFN
research administrative assistant in 2010 and have been covered by the EOLFN REB approval
since 2011. I participated in the journey mapping data collection as both a Research Assistant
and Graduate Student Trainee from 2013-2015. Specifically, for this thesis, additional new data
were collected through an on-line survey to supplement the existing data. The community chose
to have the raw research data stored and managed at Lakehead University by the EOLFN
research team because they do not have a local REB an do not have the local capacity to
maintain it.
Following the approval of my thesis proposal, a “Request for Amendment to a Project
Approved by the Research Ethics Board” form was submitted to the Lakehead University REB
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electronically through the REB ROMEO research portal system. The purpose of the amendment
form was to conduct an on-line survey with internal and external health care providers and the
EOLFN Research Team and analyze all existing data pertaining to the journey mapping process.
The amendment included: (1) the study background and purpose, (2) survey participant
information email body text, (3) a copy of the on-line survey, and, (4) my Tri-council Policy
Statement Training (TCPS) certificate (completed December 13, 2012 and attached in Appendix
F). Prior to the submission of the amendment, it was reviewed and approved by the EOLFN
Principal Investigator and Project Manager. The approval letter was sent via email, as Lakehead
University REB amendment approvals are now paperless. Please see Appendix G for the
approval and email correspondence regarding the paperless approval process.
For five years, all electronic data, including the focus group audio recording, has been,
and will continue to be stored in two places; on a password protected laptop and on an encrypted
external hard drive kept in a locked filing cabinet, located in a locked office on site at Lakehead
University – Centre for Education and Research on Aging & Health (CERAH).
Data collection
Summary of previously collected data.
Most of the data that were used in this case study were existing and collected from
August 2013 through April 2015 as part of the EOLFN project. Previously collected data
included written documents, field notes of direct observations and all materials prior to, during,
and following the series of four journey mapping workshops. Preparatory data that related to
planning and preparing for the journey mapping sessions included: meeting agendas, email
correspondence, invitee lists and participant packets. Data obtained during the workshops
included: field notes, observations, meeting minutes, care pathway diagrams, and photographs.
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Post workshop data included: workshop reports and recommendations, an OTN videotape, a
community member focus group and audio recording.
In my role as an EOLFN Research Assistant, I was the responsible for collecting the
majority of this data. The existing data used for the thesis were summarized in Table 5 below
prior to beginning my analysis.
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Table 5. Existing data analyzed for this thesis
Date(s) Length Participants Location Facilitator Format Workshop focus Data analyzed
August
15, 2013
½ day
(4 hours)
n=14
Community members,
EOLFN Research
Team, internal and
external health care
providers (HCP)
Naotkamegwanning
First Nation
Principal
Investigator
Face-to-face
workshop
Journey mapping
(current state)
Preparatory meeting minutes,
participant list, agenda, HCP
forms, workshop meeting minutes,
observations and field notes,
photos, process flow charts, final
report
February
5-6, 2014
2 days
(14
hours)
n=17
Community members,
EOLFN Research
Team, internal and
external HCP
Best Western Lakeside
Inn Conference Centre,
Kenora
Outside
consultant
Face-to-face
workshop
Value stream
mapping
(began future
state)
Preparatory meeting minutes,
participant list, agenda, HCP
forms, workshop meeting minutes,
observations and field notes,
photos, process flow charts, final
report
August 6,
2014
½ day
(3 hours)
n=20
Community members,
EOLFN Research
Team, internal and
external HCP
District Hospital,
Kenora
Principal
Investigator
and
Community
Consultant
Face-to-face
workshop
and
webinar
Journey mapping
(future
state/planning of
details)
Preparatory meeting minutes,
participant list, agenda, workshop
meeting minutes, observations and
field notes, webinar video, process
flow charts
October 1-
2, 2014
2 days
(11
hours)
n=9
Project advisory
committee and
community members
and EOLFN Research
Team
Aboriginal Health
Access Centre (AHAC)
Kenora
Community
Consultant
Face-to-face
workshop
Validation of
concepts from
previous
meetings;
creation of care
pathway
Participant list, agenda, workshop
meeting minutes, observations and
field notes, photos, audio
recordings, process flow charts,
care path diagram
April 16,
2015
90
minutes
n=8
Focus group with
Naotkamegwanning
project advisory
committee
Best Western Lakeside
Inn Conference Centre,
Kenora
EOLFN
Research
assistant
(Jessica
Koski)
Face-to-face
focus group
PAR (See focus
information letter
and group guide)
Focus group transcript; field note
and observations.
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Focus group with community members.
On April 16, 2015, I conducted a semi-structured focus group using a focus group guide
with open-ended questions. The focus group guide was developed by me and my thesis
supervisor based on previous data from the needs assessment related to the community’s barriers
and challenges as identified by the community and health care providers. Development of the
focus group guide also involved reviewing the objectives of the journey mapping workshops and
the priorities identified by the Leadership Team.
A total of eight participants attended the focus group (not including me), seven of which
are Naotkamegwanning community members. The eighth participant was the EOLFN
Community Consultant who was hired to support and assist the Home and Community Care
Program Coordinator (EOLFN Community Lead) in Naotkamegwanning. The focus group was
conducted as part of a two-day retreat that involved the Leadership Team.
At the start of the focus group, I read the information letter to the participants and
presented each participant with a copy. During the presentation of the information letter, it was
openly noted to the participants that due to the nature of a focus group format, anonymity of
focus group participants could not be guaranteed, however all focus group data would be de-
identified. I asked the participants if they had any questions or concerns, and no one did, so I
proceeded with the consent process. Because all of the focus group participants had already
participated in the overall EOLFN project and signed consent, they were asked to verbally
reaffirm their consent prior to the focus group. The consent process was not audio recorded
because I wanted to reaffirm consent to participate prior to introducing the recorder. Each
participant was not asked to state their name and that they consent. For example, a positive head
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nod or remaining present in the focus group meeting room was considered acceptable consent to
continue with the focus group questions.
The reason to go about the consent process in this way, was based on the Canadian
Institutes of Health Research (2005) Guidelines for Health Research involving Aboriginal
People. According to these guidelines:
Written consent is not always appropriate. For most people in our society, a signed
statement is the normal evidence of consent. However, for some groups or individuals, a
verbal agreement, perhaps with a handshake, is evidence of trust, and a request for a
signature may imply distrust. In some types of research, oral consent may be preferable
(http://www.cihr-irsc.gc.ca/e/29134.html).
Once everyone provided consent, I introduced the audio recorders and asked the
participants if they were comfortable with the discussion being recorded. I made sure everyone
understood that the data collected will be used by the overall EOLFN research and my thesis
research in a de-identified manner, and that only the EOLFN Research Team would have access
to the audio recording and data. It was noted that this is a safe environment for participants and
the Home and Community Care Program Coordinator (EOLFN Community Lead) was there to
support them with questions and/or translation, and they participants can decline participation at
any time.
I sought to answer the open-ended questions listed in the focus group guide. These
questions were designed to explore the experience of community members in relation to
answering the overarching research questions. When necessary, I used probing techniques, to
obtain additional information, but I did use probing in a way that would not lead participants or
be intimidating to them.
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On-line survey with health care providers and EOLFN Research Team members.
External health care providers and the EOLFN Research Team were sent an email that
included a description of the research embedded in the body of the email (see in Appendix H).
The email asked them to read the information letter information letter (see Appendix I) and
participate in a 15-minute online survey (see in Appendix J). At the bottom of the email, there
was a link that led the participants to an online SurveyMonkey® survey. The first page of the
survey was the study information letter which concluded by asking for their consent. After
reading the information letter, the first question participants were asked was: “I give consent to
participate in this study.” If the participant chose “yes”, they continued through the survey. If
the participant selected “no”, the structural logic ended the survey.
The on-line survey questions were developed by me with guidance from my thesis
supervisor based on the focus group guide and previous data from the needs assessment related
to the community’s barriers and challenges. Similar to the focus group guide, development of
the survey questions also involved reviewing the objectives of the journey mapping workshops
and the priorities identified by the Leadership Team.
The format of the on-line survey combined a rating scale with 14 statements and nine
questions with open-ended free-text fields. The scale portion of the survey sought to document
respondents’ perceptions of the journey mapping including the process and benefits for
communication, collaboration and care delivery. The open-ended questions in the survey sought
information related to the most and least beneficial aspects of the journey mapping workshops,
what could have improved the workshops, and if participants would recommend similar
workshops to other First Nation’s communities.
Data analysis
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The data analysis strategy for this research had two components: analysis of the
qualitative data and analysis of the survey data. Findings from both were compared for
similarities and differences to see if the data from different sources and stakeholders triangulated
or whether there were divergences.
For the qualitative data analysis, the focus group data was inductively analyzed first.
These data best captured the voice of the community members related to the research questions.
Generating the themes from the community perspective sensitized me to the Naotkamegwanning
participants’ perspective and provided a culturally respectful lens from which I could analyze the
existing data that had been collected during the journey mapping workshops. The existing
journey mapping workshop data were analyzed next using an analysis guide created for that
purpose. Patton’s Qualitative Checklist was also used to guide the qualitative data analysis
process to ensure the qualitative findings were clear, credible, and addressed the research
questions (Patton, 2003). The survey data from the external providers from health care
organizations were analyzed separately and the process is described later in this section.
Focus group transcription and analysis.
An inductive approach (MacPherson & McKie, 2010) was used to analyze and code the
focus group data that was collected in April 2015. First, I transcribed the focus group verbatim
from the audio recording. Then I printed the focus group transcript and validated it by reading
the print-out while simultaneously playing the audio recording to ensure word-for-word
accuracy. Next, I made the changes electronically and reprinted the transcript. I read the
transcript in its entirety three times over the course of five days before I began coding to ensure
my familiarity with the data (MacPherson & McKie, 2010). At that point, following
transcribing, validating, and reading, I became immersed in the focus group data. I was
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conscious that the impressions I formed were consistent with the context of the data set (Hatch,
2002). Once I became immersed in the data, I began memoing and key themes were highlighted
and colour-coded. I was then ready to begin a three-part inductive analysis process that included
(1) line-by-line analysis of the transcript to identify the ideas represented during the focus group,
(2) grouping the ideas into themes and subthemes, and (3) organizing the themes to address the
research questions (Thorne, Kirkham, & O'Flynn-Magee, 2004).
The themes identified were reviewed with my supervisor at which time we created a large
visual diagram on the wall which mapped out the themes, with journey mapping at the center.
My supervisor and I were able to review and modify the themes during the creation of the
diagram to better reflect the data, more effectively address the research questions and more
clearly provide a structure to tell the story of the journey mapping experience. Should there have
been a disagreement on the coding structure, a member of the thesis committee would have been
asked to review the theme(s) and decide on the appropriate code; however, there was consensus
on the coding.
In the end, a foundational theme that grounded the analysis, two core ethical concepts,
four overarching themes, and seven subthemes emerged to answer the research questions from
the perspective of the community. To support these themes and tell the story of the journey
mapping process, narrative quotes with significant meaning(s) were extracted. To ensure
anonymity, titles were used to identify the participants.
Consistent with APA (6
th
ed.), quotation marks were omitted for quotes of 40 words or
more. Direct quotes have been italicized to indicate the quote is verbatim. Field notes are in
plain font because they are not direct quotes; they were summarized and documented by me.
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Both direct quotes and field notes have been formatted in indented free-standing blocks
(American Psychological Association, 2010).
To improve the clarity of meaning in data extracted from the focus group for my quotes, I
did edit the participant’s verbatim statements as described in the next paragraph. Before editing,
I carefully reflected on the content and context of the quote so that I could accurately interpret
the intent of the speaker. I am confident that the intent and thoughts communicated by the
participants were not misrepresented or changed as a result of the editing process.
In the quotes presented in the findings, the removal of unnecessary words, such as non-
lexical conversation sounds (uh, um, mhm, uh-huh, hmm) or repeated words (yeah, yeah) are
represented by ellipses appearing in square brackets. For example: […]. Free standing ellipses,
represented by three consecutive periods: …, were used to indicate the speaker is pausing to
think about something. Throughout the narrative quotes, parentheses were used to provide
supplementary information that was not communicated verbally, such as: (emphasized). The
word “emphasized” appears in parentheses to indicate to the reader that the previous word or
statement was emphasized. Additionally, parentheses were used to provide supplementary
information to the reader that was communicated visually only to those present in the room.
This refers to information that was not explicitly stated aloud by the original source, such as:
(points to community member). In this example, the additional information in parentheses
provides contextual clarity for the reader.
Analysis of existing workshop data.
After the thematic structure of the results were created inductively from my community
focus group analysis, these themes were then used as a sensitizing framework to guide the
analysis of the pre-existing workshop data (described in Table 5). To organize these data, I
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inventoried it and organized it by workshop sequence (one through four) and date. Within each
workshop folder there were three categories: (1) preparatory workshop documents, (2) post
workshop data, including meeting minutes, observations, field notes, and reports, and, (3) other
data, including photographs and an OTN video.
To analyze and code the existing data, the themes generated from the focus group
analysis were used as a sensitizing framework to guide the analysis. In addition, an additional
guide for analysis of the existing data (see Table 6) was created based on the research questions
by hypothesizing evaluation metrics with my supervisor (Patton, 2003) and these questions were
also used to examine the data. Using these two analysis guides created confidence that all
relevant information had been extracted pertaining to the thesis research. This process intended
to ensure no ideas, themes, or categories relevant to the research questions were overlooked. I
continued to meet with my thesis supervisor on a regular basis to ensure rigour.
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Table 6. Guide for analysis of existing data
How effective was the Naotkamegwanning journey mapping process to create the care pathway
for integrated home palliative care for Naotkamegwanning community members who choose to
die at home?
What learnings and promising practices have emerged from this case study that can inform
development of an EOLFN toolkit on journey mapping for other First Nations communities?
What was the role or contribution of the various stakeholders/participants in the journey mapping
process?
How did each stakeholder role contribute to the journey mapping process?
How did Naotkamegwanning leadership and clinical teams contribute to the journey
mapping process?
How did the Home and Community Care Program Coordinator (EOLFN Community
Lead) contribute to the journey mapping process?
How did the Community Consultant contribute to the journey mapping process?
How did the EOLFN Research Team contribute to the journey mapping process?
How did Naotkamegwanning leadership and clinical teams contribute to the journey
mapping process?
How did other stakeholders contribute?
How did each one of the four journey mapping workshops contribute to creating the care
pathway?
What were the facilitators and barriers in the journey mapping process?
This includes contextual issues such as time, attendance, etc.
What were the key catalysts during the journey mapping workshops?
How did the workshops contribute to system integration? For example facilitating
communication, collaboration, knowledge of services
How could the journey mapping process be improved in future?
What is the unfinished business in the journey mapping process?
What was the most significant change that resulted from the journey mapping and creation of the
care pathway?
What process of palliative care journey mapping in FN communities is recommended for the
future?
Was the concept of two-eyed seeing evident in the data? If so, how?
Is there anything else in these data that is interesting, important or relevant to the research
questions?
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Survey analysis.
The survey data were transferred from SurveyMonkey into Microsoft Excel. Quantitative
data were summarized in tables and the responses to the open-ended questions were analyzed
line-by-line to capture participants’ opinions about the journey mapping experience. The
qualitative data from the open-ended questions were then grouped and three over-arching themes
were identified and summarized.
Rigour
PAR research, to be rigorous, must be guided and controlled by the participants, and lead
to actions that benefit them. Because creation of the care pathway was grounded in the findings
of the community needs assessment and the journey mapping process was led by the
Naotkamegwanning community, this thesis has respected the fundamental principles of PAR.
The lessons learned and promising practices that have been identified through this thesis research
provide practical outcomes that will benefit Naotkamegwanning and other First Nations
communities that choose to conduct journey mapping in the future.
To ensure rigour, this research utilized the “Eight ‘Big-Tent’ Criteria for Excellent
Qualitative Research” as identified by (Tracy, 2010). These include: (1) a worthy topic, (2) rich
rigor, (3) sincerity, (4) credibility, (5) resonance, (6) significant contribution, (7) ethics, and (8)
meaningful coherence.
Each of the aforementioned criteria has been incorporated into my thesis research. For
example, as discussed in the background, there are gaps in the literature in relation to journey
mapping to create a palliative care pathway in First Nations communities; therefore, the topic is
worthy, relevant, and timely. Furthermore, this research has meaningful coherence because it
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uses methods and procedures that are appropriate to the research purposes and it meaningfully
connects the literature with the research questions and the lived experience of the participants.
In addition, the study is rich in rigour because I was immersed in the research setting and
had ongoing relationships with the participants for over two years while collecting data with the
community and partners. I have incorporated mixed-methods into the data collection process so
that the most suitable method of data collection and analysis was used in each situation. I have
also ensured sincerity by self-disclosing my values, biases, and personal background, and
ensured transparency in the research methods. As discussed in the ethics section, this research
incorporates a well-rounded ethical plan. The research will ensure exiting ethics in that a final
bound copy will be provided to the Naotkamegwanning community members.
In the sections that follow, I have demonstrated that the remaining criteria have been
incorporated. For example, to ensure credibility, the findings are rich in detail and supported by
participant quotes. By creating a culturally relevant figure to display the qualitative findings, the
research outcomes have been presented in a way that will best resonate with First Nations
community participants. In addition, the research provided a significant contribution to gaps in
literature related to journey mapping to create a palliative care pathway in First Nations
communities, and how the journey mapping process could be conducted in the future.
Triangulation.
To ensure the data were comprehensive and robust, methodological triangulation
(Cresswell, 2013) was incorporated in this thesis research. Methodological triangulation was
achieved because more than one data set was collected from a variety of participants in different
ways (Strauss & Corbin, 2008). In embracing a PAR methodology (Kemmis & McTaggart,
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2005) various data were collected, including a focus group, observations and field notes, a
survey, meeting minutes and workshop reports .
Prior to analysis, I reviewed various arguments related to triangulation. My use of
triangulation in this research was not to evoke a univocal truth, but more so as a means to
identify differing accounts from community members and health care providers (Angen, 2000).
As discussed in the next chapter, the findings from the focus group, survey and existing data
were consistent for the most part and saturation in the data was achieved. When saturation was
achieved, it provided a strong source of rigour and resulted in reliable findings. By incorporating
triangulation, I was also able to identify where community members and health care providers’
viewpoints varied. I felt that by considering triangulation in this way, I would be best able to
analyze the effectiveness of journey mapping to create the palliative care pathway and identify
lessons learned and promising practices.
Member checking.
Following the completion of analysis, member checking (Cresswell, 2013) was
conducted to validate the qualitative themes that arose and ensure the voice of the community
was accurately interpreted. The Home and Community Care Program Coordinator (EOLFN
Community Lead) and the Community Consultant vetted the findings because they were key
informants and participated in all of the journey mapping workshops and the focus group. I met
with each individually via teleconference to summarize the qualitative findings and asked for
their input. Both the Home and Community Care Program Coordinator (EOLFN Community
Lead) and the Community Consultant agreed that the findings were an accurate interpretation. In
the findings chapter, I introduce a perched eagle figure that I designed to represent the qualitative
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findings. Both key informants felt the eagle is a thoughtful and appropriate way to represent the
findings.
At the end of the teleconference with the Home and Community Care Program
Coordinator (EOLFN Community Lead), I made arrangements to hand deliver a final bound
copy of this thesis, upon its completion and approval, for distribution to the Leadership Team.
The Home and Community Care Program Coordinator (EOLFN Community Lead) also asked
for an electronic copy of the perched eagle figure (discussed in the findings chapter) to share
with the Leadership Team and community.
A summary of the findings will be provided to the stakeholders that participated in the
journey mapping workshops. In addition, open-access to a free practical guide on journey
mapping that incorporates many of the findings of the thesis is already available for use by other
First Nations communities at www.eolfn.lakeheadu.ca.
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Chapter six: Findings
The detailed findings that are presented in this chapter support that all participants,
Naotkamegwanning community members and external health care providers, perceived the
journey mapping process as effective to create a new palliative care pathway. Having the care
pathway developed helped to integrate the services of internal and external health care providers
with the community’s cultural practices. The journey mapping process was seen as contributing
to improved client care in Naotkamegwanning.
However, equally important, there were many learning and promising practices that
emerged from the data during the case study research. The Naotkamegwanning community
members, the external health care providers and the EOLFN Research Team members all made
suggestions for improving the process for use by other First Nations communities. Consistent
with the PAR methodology, ongoing changes were implemented over the two years of the
journey mapping based on feedback received from participants. There were regular project
meetings that allowed for reflection by the EOLFN Research Team and community members
about improvements. The final journey mapping guide, created by the EOLFN Research Team as
part of the project workbook, incorporated many of learnings and promising practices presented
in this thesis research.
Within this chapter, the findings are divided into two sections: (1) findings from analysis
of the qualitative data, which include community member focus group findings, meeting
minutes, workshop reports, field notes and an OTN workshop video, and, (2) findings from
external partner surveys that include both numerical data from rating scales and qualitative data
from open-ended questions.
Findings from the qualitative data analysis:
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The themes generated from analyzing the qualitative data are displayed visually, a
practice which is common among qualitative researchers. Data display helps in the presentation
of inferences and conclusions and offers a ways of organizing, summarizing, simplifying, or
transforming data (Verdinelli & Scagnoli, 2013). For this thesis research, I sought to tell the
story of the Naotkamegwanning journey mapping experience by displaying the data in a
symbolic, meaningful way.
The findings are visually represented in Figure 12 titled “Conducting Palliative Care
Journey Mapping: Lessons Learned and Promising Practices” which incorporates an eagle
perched atop a pine tree. The journey mapping figure adopts the perched eagle as a grounding
metaphor to infer that the journey mapping process must be founded in the community’s vision
for change. The pine tree represents the EOLFN project’s overall approach based on the
principles of PAR and community capacity development. Supporting the foundational theme and
infusing up through the pine tree’s branches are the core ethical concepts of conducting journey
mapping in First Nation’s communities: “building trusting relationships” and “honouring
community control.” At the center of the eagle’s body is the core organizing concept,
“Naotkamegwanning palliative care journey mapping.” A thematic map extending from the core
out into the body identifies four major themes (closest to the center) and five subthemes that
extend outwards into the wingspan. These themes and subthemes represent the lessons learned
and promising practices I interpreted from the data.
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Figure 12. Conducting effective palliative care journey mapping: Learnings and promising practices
Founded in the community’s vision for change
Journey
mapping
requires that
communication
is respectful of
the community’s
beliefs
Naotkamegwanning
Palliative Care
Journey Mapping
Journey
mapping
requires time
commitment
Journey
mapping
develops a
culturally
appropriate
care pathway
Journey
mapping
requires
community
planning
Includes Elder
guidance
throughout
the process
Obtain
community
support and
create
awareness
Ensure
community
readiness for
journey
mapping
© Jessica Koski, 2016
Stakeholder
contribution
and follow
through is
required
Journey
mapping
workshops are
conducted in a
culturally
relevant format
Care pathway
is respectful of
the individuals’
wishes, values
and beliefs
Building trusting relationships Honouring community control
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The idea to represent the data within the body of an eagle came to me because it is
symbolic to the Naotkamegwanning First Nation community and appears in the community’s
logo. I was also inspired by the visual model used by the EOLFN project, “Process of Palliative
Care Program Development” (Figure 1), which is discussed in the Introduction chapter. I feel
that my figure is an evolution of the EOLFN model, incorporating the tree image. Throughout
the EOLFN research, the Community Leads and Community Facilitators shared stories about the
importance of the eagle. As one member of the Advisory Committee, Six Nations of the Grand
River Territory explained:
The pine tree symbolizes the tree of peace. The branches provide protection and the white roots
spread in the four directions of the earth. The eagle on top is a spiritual being that warns of
impending danger and is a symbol of strength. The eagle watches over all and is a connection to
the Creator (EOLFN Research Team, 2015, p. 5).
This quote resonated with me, and provided the inspiration for me to draw the eagle and
represent the findings in a unique way. I envisioned the eagle soaring high, close to the Creator.
It has the ability to see past, present and future, which is similar to the approach taken during the
journey mapping workshops when creating the care path. Community members shared stories
from their past experiences, and those examples were used to create the current (present) state
which provided the basis for creating the desired (future) state of care. While the themes within
the wingspan of the eagle encapsulate all the qualitative themes identified in this research, there
is unoccupied space. The space that remains is intentional as it allows room for future research
and development of this figure.
Prior to finalizing use of the perched eagle in the journey mapping figure as a
representation of the findings, I met with the Lakehead University Elder in Residence, Elder
Martin. I offered him tobacco wrapped in red broad cloth, introduced myself, this thesis
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research, and the eagle figure I drew. I asked Elder Martin if it was appropriate to use the eagle
to represent my findings, and he said that it was. He agreed with the description of the eagle’s
ability to see past, present, and future, explained its relationship with the Creator, and importance
in Ojibway culture.
As shown in the journey mapping figure, the qualitative data are grounded by the
foundational theme “Journey mapping must be founded in the community’s vision for change.” .
Supporting the foundational theme and infusing up through the pine tree’s branches are the core
ethical concepts of conducting journey mapping in First Nation’s communities: “building
trusting relationships” and “honouring community control.” There were four major overarching
themes that emerged during the analysis phase. These overarching themes include: (1) journey
mapping requires community planning, (2) journey mapping requires time commitment, (3)
journey mapping requires that communication is respectful of the community’s beliefs, and (4)
journey mapping develops a culturally appropriate care pathway. From these overarching
themes, several sub-themes also emerged which are supported by direct quotes from the focus
group participants or field notes. In the sections that follow, each of these themes and subthemes
are elaborated and supported by field notes and quotes from my research. Collectively, the
themes and subthemes address the research questions as they illustrate the perceived
effectiveness of the journey mapping and incorporate the lessons learned and promising practices
for future use in First Nations communities.
In the case study chapter, I described each of the four journey mapping workshops in
detail and provided an overview of the stakeholders involved in the journey mapping process. In
this chapter, I summarize how each journey mapping workshop contributed to the overall
creation of the care pathway and describe in detail each stakeholder’s contribution during the
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journey mapping process. Each workshop was analyzed for its contribution to improving system
integration, including the barriers and facilitators, key catalysts, and key learnings and promising
practices in creating the care pathway. The domains, such as locations, attendees, and allocated
time were analyzed as well.
Foundational theme: Journey mapping must be founded in the community’s vision
for change.
The data supported the idea that the journey mapping process must be founded in the
community’s own vision for change. The theme, “Journey mapping must be founded in the
community’s vision for change” is therefore the grounding theme in this thesis analysis. It
emphasizes that the community must perceive and articulate expected benefits for its own
members before undertaking the journey mapping process to create the palliative care pathway.
This idea of grounding every action in community values and principles is also consistent with
the community capacity development model “Process of Palliative Care Program Development”
that guided all of the strategies to help build community capacity in palliative care.
For Naotkamegwanning, the expected benefits to community members became evident when the
following stories were shared at a journey mapping workshop. During this workshop, a
community member who was also a local health care provider (HCP) was asked to provide her
perspective on why journey mapping is important for the community members and what she
hoped they would achieve. She told the following story that she had obtained permission from a
client of the Home and Community Care program to share in the research. I documented her
story in the following field note:
The client is frail and elderly with adult children that work, so the client has been
transported around to their children’s homes, in town (Kenora) and in the community (a
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120 km distance) because they work. The Home and Community Care Program has done
its best to support the client Monday through Friday, 9:00 a.m. to 5:00 p.m., but that is
not very helpful to the family. If someone could provide after-hours care and go stay
with the client in the client’s home, that would be more beneficial to everyone.
[Community member HCP; Journey mapping workshop #3; Field note]
The community HCP shared three more examples that illustrate the motivation for the
journey mapping (below). The first indicates that keeping clients at home for as long as possible
is valued by the client, family and community even if the final outcome is a hospital death. The
second is an example of a community member that could have benefited from local palliative
care services but was unnecessarily transferred to hospital at the end of their life. The third
expresses her desire to develop a local palliative care program and her belief that dying at home
in a rural area is possible.
There was one client in the past that wanted to pass at home, and they tried their best to
make the client’s wishes come true, but with different policies and mandates, the client
died in the hospital. They were able to keep the client in the community as long as
possible, so that was a good thing. [Community member; Journey mapping workshop
#3; Field note]
There was another client that recently passed. At the service the visiting physician
whispered to me, ‘(name of client) could have passed at home; that client should have
passed at home.’ The community HCP was not sure at the time why the physician said
that, and indicated that follow-up would be necessary to determine why the client went to
the hospital at the end of life. The HCP reflected that often the family panics when their
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loved one approaches death, but it could also be due to inadequate services in the
community, or other reasons. [Community member; Journey mapping workshop #3;
Field note]
“I know it [home death] is possible”. The community member shared that they have
heard success stories – one in particular about a rural man with cancer, and he was able to
get a hospital bed and had various care providers coming into the house, and he was able
to pass at home. “So if it can happen, why can’t it in Whitefish [Naotkamegwanning]?
Why is it so difficult for that to happen in our community?” the community member
asked. [Community member; Journey mapping workshop #3, Field note from OTN
video]
A member of the EOLFN Research Team added the following comments related to why
clients should have a choice to die at home:
Last year four clients in Naotkamegwanning passed away, all in the hospital, and this
year three clients from Naotkamegwanning passed away, all in the hospital; I am not
saying that all of the people wanted to die at home, but some of them did want to die at
home, and that wasn’t a possible option. In other words, 100% of clients in
Naotkamegwanning First Nation die in the hospital. The whole goal is to make it [home
death] a possible choice. The federal government is trying to implement a national
palliative care strategy, the goal of which is people have a choice. [Research team
member; Journey mapping workshop #3; OTN video]
To summarize the importance of the foundational theme, the journey mapping to create a
palliative care pathway was motivated by community members’ vision for change. Journey
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mapping was not viewed as a standalone process or isolated event. Consistent with the
community capacity development model (Figure 1) the events described in the field notes were
catalysts for change that lead to the creation of a community vision, and that vision guided the
entire journey mapping process. For Naotkamegwanning First Nation, the vision for change was
that community members wanted the option to receive palliative care at home in their
community so that it was grounded in their culture and traditions. They know this vision is
possible to achieve if adequate supports (after-hours care, community-based services and
funding) are in place. Community members saw the journey mapping as one strategy to achieve
their vision.
Core ethical concepts of conducting journey mapping Naotkamegwanning First Nation
Building upon the foundational theme, two core ethical concepts were identified in the
data: (1) building trusting relationships, and (2) honouring community control. These ethical
concepts infuse up through the branches of the pine tree and are prerequisites prior to conducting
journey mapping.
Building trusting relationships
As identified and summarized from the three workshop meeting minutes that involved
external health care providers, each journey mapping workshop began with an introduction by
the workshop facilitator that emphasized the importance of focusing on the community needs
during the journey mapping sessions. This introduction was then followed by a story from one
or more community members as to why journey mapping and creation of the care pathway was
important for their community. The workshop facilitator then invited all workshop stakeholders
to introduce themselves. Following introductions, ground rules were set and goals and
expectations were discussed as a group.
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These relationship building activities were documented in the following excerpt from the
workshop meeting minutes.
Ground rules were established:
Consider the two-eyed seeing concepts
Silence phones/take calls outside
One speaker at a time
Stick to start/end times and take breaks
Our goals are to:
Create a plan,
Implement it,
Document the outcomes,
Evaluate the process,
Demonstrate lived experiences in the community, and
Bring the results/outcomes/findings forward to LHIN
Expectations were discussed:
Focus on the community; listen to and hear the needs of the community
Build relationships in the community
Be aware roles may stretch
Develop a recommendation model
[Journey mapping workshop #2; meeting minutes]
These activities began to build relationships between community members and health
care providers, however, community members expressed they had felt intimidated by the
external health care providers. The following quotes provide evidence:
Another journey mapping session that we had was at the hospital. Maybe you [Elders]
want to talk about that ‘cuz uh, I again, I can sense (laughs) something from you guys
[Elders] at that time. [Community member; Focus group]
I guess it’s just, for me it was just the people (external health care providers) that were
there. Nothing bad, it was just their intimidation, I guess. They’re just, we know they’re
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really smart people, and ya know, what do I have to offer kind of thing (laughs). [Elder;
Focus group]
The ideas expressed in the previous conversation alluded to communication challenges
associated with professionals and the long lasting effects of colonization which resulted in a
sense of disempowerment. Two Elders also mentioned that at times they felt they weren’t
listened to. These ideas contradict the findings from the survey of external health care
providers, in which 100% of respondents felt the “voice of the community members was
respected and the views of the community members were incorporated. Most felt that their own
voice was also heard in the workshops.” Therefore the lesson learned for future journey
mapping is that building trusting relationships is essential.
Because the community had been working with the research team two years prior to
conducting the journey mapping workshops, a trusting relationship between the community and
research team was already in place. Abandoning the value stream mapping strategy in
Workshop #2 and instead adopting a more culturally appropriate story telling approach as
previously described also strengthened the trust. When the value stream mapping format and
terminology was abandoned, it became the turning point of the workshop.
Honouring community control
Prior to engaging in journey mapping workshops, individuals external to the community
– both researchers and health care providers- must ensure community control is honoured. The
overall EOLFN project, which embraced a PAR methodology, community capacity development
and the principles of OCAP®, ensured full community involvement and honoured the
community’s control. This was evident by the role of the Leadership Team that was established
in the community and by the community. The Leadership Team provided local control and
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guidance of the research being conducted in the community and determined who would be
included in the journey mapping. The community maintained copies of all of the project reports
and summaries, however, they chose to have the raw research data stored and managed at
Lakehead University by the EOLFN research team. All the primary and secondary data used in
this thesis are being stored consistent with the Lakehead University Research Ethics Board
policies as described in the research ethics section of this thesis.
The importance of this ethical concept became evident during the value stream mapping
workshop (journey mapping workshop #2) when it was identified that the value stream mapping
approach was not resonating with community members and a storytelling approach was adopted
instead. It was at that time community members requested that no typed notes be taken during
the discussion while they shared cultural practices and traditions related to the end of life.
However, it was agreed upon that I could draw a diagram during this time as long as traditional
practices were not included. The following field note demonstrates evidence of this respect of
community control.
The majority of the discussion for day two is found in the attached care path diagrams.
At the request of the community laptops were put away and notes were not taken during
this discussion, rather an open group dialogue was preferred. I drew out a high-level
flowchart of the process being discussed, but I did not document any traditional practices
that were discussed. [Field note; Journey mapping workshop #2]
The remainder of this section describes the four major themes that are included in the
journey mapping figure and the six subthemes and support them.
Theme one: Journey mapping requires community planning.
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The first major theme to emerge from the qualitative data was that journey mapping
requires community planning. The community learned that the journey mapping process
required substantial preplanning to undertake the overall process. Additional preparatory
planning was needed prior to each of the journey mapping workshops. Planning needed to
include community-based planning and engaging people and organizations outside of the
community. Planning needed to be led by the Project Advisory Committee, the Leadership
Team and Community Lead and/or Community Facilitator.
Sub-themes emerging from this major theme were to: (1) ensure community readiness for
journey mapping, and (2) obtain community support and create awareness.
Ensure community readiness for journey mapping. As documented in multiple field
notes, prior to conducting the journey mapping workshops, there was hesitation from some of the
Elders on the Leadership Team to actively participate in the project due to cultural teachings that
prevent discussing or planning related to death and dying. The Home and Community Care
Program Coordinator (EOLFN Community Lead) was also hesitant to draw attention to the
research at first because the feeling in the community was that the project led to discussions
about death and palliative care. This reluctance resulted in fragmented and insufficient
preplanning which negatively impacted the initial workshop. During the focus group community
members and Elders identified preplanning activities that would have been beneficial to ensure
readiness for the journey mapping workshops. Once the Leadership Team began using the term
Wiisokotaatiwin (taking care of each other), they became more actively involved and the journey
mapping process progressed more effectively.
Focus group participants agreed that internal community planning is the first step in the
journey mapping process. Participants felt “[journey mapping] should have started from [within]
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the community instead of inviting all our external health care providers first.” In the following
quote, a focus group participant indicates that the community should have done more
preplanning by determining what services were in place prior to inviting external health care
providers:
…I think that we should’ve started within our own health services all our, our team, and
see what services […] we access, like mental health access or another group of, um,
resources, might have another group, you know, we should’ve sat together and did that.
[Community member; Focus group]
Meeting organization was required to prepare for the four journey mapping workshops.
For Naotkamegwanning, EOLFN Research Team members worked side-by-side with the
Community Lead to arrange meeting space, catering, handouts, workshop supplies, and
coordinate specific dates and times to accommodate the largest number of participants. Planning
for the journey mapping workshops included preparatory teleconferences with the Home and
Community Care Program Coordinator (EOLFN Community Lead), Community Consultant and
members of the EOLFN Research Team, including the Principal Investigator, Project Manager,
Project Coordinator and Research Assistant. During these teleconferences we discussed the
logistics of the journey mapping workshops, documented actions items, discussed who would do
what and made a plan for next steps. Each preparatory teleconference, with the exception of the
value stream mapping workshop #2, was one hour. Preparation for the value stream mapping
session required a series of three one to two hour teleconferences with the consulting group from
Toronto. The first teleconference was a discovery call led by the Principal Investigator and
Community Facilitator to introduce the project and community context to the consultant. The
second teleconference was led by the consultant and the concepts of lean were discussed. The
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third teleconference was a group discussion about logistics and we reviewed the proposed
agenda for the journey mapping workshop. Following the preparatory teleconferences, any
clarifying questions or follow-up on task items were discussed via email exchange.
The following conversation demonstrates an example of the logistics involved in
preparing for the journey mapping workshops, and the recommendation that other communities
can streamline the journey mapping process based on the lessons learned from
Naotkamegwanning’s experience:
I’m hoping that the toolkit that we create, will kind of, not eliminate that step (extensive
planning for the journey mapping), but make it easier for that community…You know,
this is what Whitefish did, we don’t want to do it exactly how they did it, but […] we can
do this part this way…You know what I mean? [Community member; Focus group]
“Streamline it.” the Community Consultant replied.
For their own community […] because the journey mapping part of it […] took a lot of
time and it took a lot of work to get the people together […] how much people did we
have at that first session?...Like um, 20 people, our health care providers…And we had
to…make sure that everybody was available for that date, ya know? [Community
member; Focus group]
“And that took planning…” the Community Consultant added.
And that was, to make everybody available. [Community member; Focus group]
During the journey mapping process, there were three groups that moved the process
forward. Each contributed to the planning for the journey mapping in a unique way. The
Leadership Team moved the process along internally within the community by carrying out the
recommendations from the workshop reports. The EOLFN Research Team supported the
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planning for the journey mapping workshops; documented the workshops, and provided
workshop reports following the journey mapping. The stakeholder working group, which carried
out tasks assigned during the journey mapping workshops.
Obtain community support and create awareness. Focus group participants discussed
the Wiisokotaatiwin (palliative care) Program, and the importance of getting community support
for palliative care and creating awareness about what is being done. All focus group participants
felt it was important to have community support prior to the development of a palliative care
program, however participants had varied feelings on how the progress of the program, including
journey mapping and development of the care path, should be shared with the entire community.
Some participants felt the program should not be shared with the community until it was up and
running, while others felt they could have benefited by being informed as the development of the
program and care path progressed.
Focus group participants discussed the significance of the community understanding that
the Wiisokotaatiwin Program is “what we used to do back in the day for each other” and that it is
not planning for death.
The following quote indicates the need for promoting community awareness when the
palliative care initiatives were implemented in the community. It illustrates the lack of
understanding of some community members:
When they ask me about ‘what’s [the Wiisokotaatiwin] program about?’ Like, [EOLFN
Community Lead] trying to do…and they’re like is [EOLFN Community Lead] talking
about death? And I’m just like ‘No! [The EOLFN Community Lead is] talking about
keeping us home longer.’ Because, I, I’m 41. I’m going to be up there in 20 years and I
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want to stay home as long as I could, and that’s what [the Wiisokotaatiwin] program is
starting. That’s what I’m trying to explain to them. [Community member; Focus group]
As one community member explains in the following quote, the Wiisokotaatiwin
(palliative care) Program and its related initiatives, such as journey mapping, needed to be
described to community members in an appropriate way so that they understand the benefits and
purposes.
…It’s about how we care for that person, because we have home care clients, and we
like, go visit them every day, ya know, like every week, and monitor, health monitor and
make sure they’re ok.
…But, with the Wiisokotaatiwin program, it’s more compassionate, more, more, there for
you, NOT (emphasized) the illness, we’re there for you, we’re not trying to cure your
illness, we’re trying to make you as comfortable as possible, and, it’s not a failure if you
do go in hospital, […] that’s still ok, but while you’re home, we’re going to take care of
you the best we can… [Community member; Focus group]
Another community member added an example related to enhanced home care services in
the community made available by the Wiisokotaatiwin program pilot funding from the NW
LHIN:
For me, it’s like if somebody says I’m ill, I, don’t wanna be in hospital, I wanna be home,
you know, it’s like, ok we can do that, we have the money (pilot funding) now, we have
the resources, we have the, like the staff, we have respite care, like if your family needs a
break we’ll have somebody there for your, so that you can, your, your caregivers can go
out shopping for you while somebody takes care of you, and is trained and understands
the program, knows how to take care of you and, and then your family will be at, at ease,
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they won’t have to worry they don’t have to be stressed, you know, you’re loved one will
be taken care of, like how YOU (emphasized) take care of your loved one. So it’s just, um
it’s not palliative care to me, I always say it’s not about death and dying, it’s about how
you provide that care to that person. That’s, I, I always try to explain it the best I can.
Palliative just DESCRIBES (emphasized) the care. [Community member; Focus group]
This community member shared story from another community member who had heard
about the program, and how that community member feels about palliative care:
And this one [community member] shared with me, um, the [community member] said my
mum doesn’t want to go hospital, we don’t want her to go to hospital, so I’m going to
take care of her like she took care of me. So that’s kind of how I, I like to think of it too.
[Community member; Focus group]
The community member continued with an additional story related to community
awareness:
As [Wiisokotaatiwin program] employees, and that’s how I wanna like, kind of not be the
family, but be that support for the family, because the family and the caregivers need that
help too. Like you (points to Elder) and the other family members who are taking care of
these other, […] people that we’ve felt that needed these enhanced services. So this
Wiisokotaatiwin is not just taking care of that individual, it’s taking care of the family.
[Community member; Focus group]
Once community members and Elders from the Leadership Team understood the
program in familiar terms, they became more actively involved in the Wiisokotaatiwin Program
development and started talking about it within the community which created awareness. This
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was valuable because communication about the Wiisokotaatiwin Program and the journey
mapping initiative was done face-to-face, by word of mouth, in familiar and appropriate terms.
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Theme two: Journey mapping requires time commitment.
Evidence related to journey mapping requires commitment was emphasized in focus
group data, field notes, observations, and meeting minutes. The sub-theme of this major theme
was: stakeholder contribution and follow through is required.
Focus group participants stressed that “the journey mapping process takes time and other
communities should be aware of that.” Participants spoke to the fact it takes time to figure out
who should be involved, develop a stakeholder working group, schedule workshops at times
convenient to everyone, and prepare for the workshops. In term of developing the palliative care
pathway, participants said, it takes time to understand other organizations’ internal protocols.
They also said it takes time for the external partners to discuss the activities of the stakeholder
working group internally within their organizations with management and carry out the tasks
assigned during the journey mapping workshops. It is important for the stakeholders involved in
journey mapping workshops to be aware of the required commitment. In Naotkamegwanning
the process took two years.
As demonstrated in the following quote, one community member spoke to the lessons
learned related to the time commitment associated with journey mapping:
…And we only slotted one afternoon, we thought we were going to have it complete that
afternoon, and then we found that, that wasn’t realistic (laughs) because we had the
doctors there, we had CCAC there, we had everybody there, but then everybody started
giving their input and it kinda, we realized that it wasn’t going to take an afternoon and
that’s when we booked that other one […] for the two days. [Community member; Focus
group]
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When focus group participants were asked what they would change about the journey
mapping process, the length of time the journey mapping took was identified as a something the
community members would change. One community member said “Put it in two days, not two
years…”
As the care path was developed during the journey mapping workshops, questions arose
that often required the stakeholders to review their internal protocols before providing an answer.
This took time to do and the community learned that journey mapping could not be done in one
workshop. The following quote provides evidence to these concepts:
I mean we could sure do it a lot quicker, […], ‘cuz you know we had a hard time trying to
figure out how best to get those partners, […] that’s one thing I think that um, we
learned, it does take time, I mean […] ya know, we, uh, wouldn’t have to scramble like
we did, it doesn’t need to take what we did, but […] some of those things you can’t just
do in two days because you can make the plan, but all those people have to go back to
their own organization, back to their own community and find out… Here’s an example:
There’s an issue about maybe if someone is on narcotics, like storing those drugs in the
house, what are we going to do to solve that because lots of families don’t want to have
narcotics in the house, it’s not necessarily safe…ya have to have periodic meetings so
that people have time in the middle to go back to their own organization and their own
places of work and make sure that the place of work is able to accommodate, what we’d
really like to, do you know what I mean? [Community consultant; Focus group]
Findings from the focus group were supported by data from my field notes and the
workshop meeting minutes. Time was identified as an issue during the journey mapping
workshops in two distinct ways: (1) lack of time during the journey mapping workshops, and (2)
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the length of time required to complete the journey mapping workshops, create and implement
the care pathway.
During the journey mapping workshops, it took considerable time to discuss each of the
nine stages of the care pathway and various possible scenarios that the client might experience
during their progression through the care pathway. Facilitators needed to follow the workshop
agendas and allocate strict time limits for discussion on each topic. Sometimes when the
stakeholder working group was gaining momentum or making progress on a certain aspect of the
care pathway, we would run out of time for that topic and need to move on. In other cases, there
were times when certain paths could not be complete, because it required a member of the
stakeholder working group follow-up within their organization on protocols, policies, or
procedures. Follow-up via teleconferences or email was then required to make additional
progress. That being said, time was utilized most productively when the stakeholder working
group was face-to-face.
Time in regards to duration to complete the care pathway was also a barrier, in that the
entire process took over two years from the first journey mapping workshop to the time that the
care pathway was implemented in the community with clients requiring palliative care. While
this was a barrier identified by both community members and health care providers, there were
several processes and procedures that needed to be worked through by the clinical team in order
to complete the care pathway and prepare for its implementation. For example, there were
several versions of a comprehensive client assessment form being used to determine the client’s
needs and it was desired to have one common form if possible. The hospital had its version, the
community nursing providers had their version, and the Home and Community Care Program
had their version. This is one example involving the clinical team having to work out an agreed
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upon process before moving forward with an additional journey mapping workshop or
implementation of the care pathway.
The contribution of each workshop is summarized in Table 7 below.
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Table 7. Journey mapping workshops 1- 4: Contribution to the lessons learned in creation of the care pathway
Workshop One
Introducing the journey
mapping process and engaging
stakeholders
Workshop Two
Value stream mapping
Workshop Three
Finalizing the care path and next
steps
Workshop Four
Including cultural components
in the care path
Focused on bringing together
community members, internal and
external health care and service
providers and the research team
for the first time.
Commitment to the journey
mapping process from the
stakeholders was established and
the group began to identify areas
for improving communication and
service integration among
themselves that would improve the
experience for the residents of
Naotkamegwanning First Nation.
Stakeholders committed to
attending future journey mapping
workshops and understood the
goal of the journey mapping
workshops was to create a
palliative care pathway.
Reunited existing stakeholders
and introduced new
stakeholders that were not
present in workshop one,
creating a more robust group of
community members, internal
and external health care and
service providers and research
team members.
The value stream mapping
format and terminology was
attempted and then abandoned.
Implementing the philosophy of
the two-eyed seeing approach
(Iwama, Marshall, Marshall, &
Bartlett, 2009) was introduced
as a way to integrate the
expectations of both the
community and health care
providers.
Reunited the stakeholders and
introduced the care path flowchart,
discussed and agreed upon next
steps.
The linear care path developed based
on previous workshops was
validated by the other stakeholders.
The roles and activities of each
stakeholder at each stage of the care
pathway was discussed in detail and
documented.
The community informed the
external partners that they would not
be involved in stages six through
nine because those steps are private
to the community.
It was determined that the next steps
for the stakeholders would involve
follow-up teleconferences to review
a work plan in order to implement
the care path.
Workshop four was private to the
community involving only
members of the leadership team,
the community consultant and me
as a graduate student. There were
no external health care providers
at this meeting as the focus was on
the internal community roles and
activities.
The care pathway evolved from a
linear process to a circular
diagram identified as the nine
stage Wiisokotaatiwin Program
care pathway.
A draft of stages six through nine
was created and documented
during this workshop.
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Stakeholder contribution and follow through is required
Data from my field notes, observations and the workshop meeting minutes supported the
subtheme that stakeholder commitment is essential in the journey mapping process. The
following findings relate to the contribution and follow through of the stakeholders involved in
the journey mapping workshops.
The role of the stakeholders in the journey mapping process was to meet face-to-face, provide
background on their role or position within the community, external agency, or member of the
EOLFN Research Team and establish rapport to form a stakeholder working group.
Stakeholders that participated in the journey mapping were individuals that represented the
following organizations or groups: Naotkamegwanning Home and Community Care Program,
Naotkamegwanning Leadership Team members, First Nations Inuit Health Branch nursing
provider agency (professional nursing agency), District Hospital, Regional Community Care
Access Centre, Aboriginal Health Access Centre, Regional Hospital – Telemedicine Nurse
Hospice Palliative Care, Home and Community Care Program First Nations and Inuit Health
Branch – Ontario Region – Health Canada, Regional Health Sciences Centre, Regional Cancer
Centre, a community doctor and three members of the EOLFN Research Team, which included
the Principal Investigator (my thesis supervisor), the Research Coordinator and me in my roles as
a Research Assistant and Graduate Student Trainee.
The contribution of the stakeholders consisted of: attending the journey mapping
workshops, discussing and working through the gaps and barriers to create a desired state of care
(palliative care pathway), providing clarity to the mandates of their organization/agency,
introducing the journey mapping process within their organization/agency, and creating a
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palliative care pathway for Naotkamegwanning First Nation. Stakeholders have been identified
in Table 8 by team name or title, members and description, and their activities and tasks.
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Table 8. Journey mapping participants
Team name/Title Member(s)/description Activities/tasks
Stakeholder
Working Group
All participants involved in
the journey mapping
workshops
The stakeholder working group was responsible for attending and actively participating in
the journey mapping workshops, doing assigned homework and bringing the results back to
the group, and introducing the work being done within their organizations.
This group was formed in August 2013 and remained in place through the completion of the
journey mapping workshops in October 2014.
Naotkamegwanning
Clinical Team
Internal and external health
care providers that provide
palliative care in the
community
After the nine stages in the care pathway were created, the Clinical Team was formed. The
Clinical Team created and documented protocols related to the palliative care pathway that
were identified during the journey mapping workshops and based on a work plan
8
. Some of
the protocols developed were: revised palliative care assessment forms; improved
communication via the in-home chart; a step-by-step process for case conferencing;
inclusion of the circle of care during creation of the care plan, and coordination of grief and
bereavement services for care givers and families after the client has died.
This group was formed in November 2014 after the journey mapping workshops were
complete.
Naotkamegwanning
Leadership Team
Elders, knowledge carriers,
Chief and Council, the Home
and Community Care Program
Coordinator (EOLFN
Community Lead), the
Community Facilitator, the
Oversaw the progression of the journey mapping and ensured local control was maintained
throughout the process. Each of the three journey mapping workshops that were conducted
with the external partners required prior preparation by members of the leadership team.
The leadership team ensured that tasks assigned to the clinical team were accomplished and
followed-up on when necessary.
8
At the end of workshop four, in my role as a Research Assistant, I worked with the Home and Community Care Program Coordinator (EOLFN Community Lead) and
Community Consultant to create a work plan that guided the tasks necessary for each stakeholder organization/agency. This was a very time consuming process that took three
people 20 hours to complete. Once the work plan was finalized a series of clinical team teleconferences were arranged and facilitated by the EOLFN principal investigator and
Project Manager, that included me, the Home and Community Care Program Coordinator (EOLFN Community Lead), Community Consultant and specific stakeholder
organizations/agencies. The goal of the teleconferences was achieved because the external stakeholders committed to the tasks in the work plan which allowed for implementation
of the palliative care pathway that was created.
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Team name/Title Member(s)/description Activities/tasks
Community Consultant, and
internal health care providers
that provide palliative care in
the community
Home and
Community Care
Program
Coordinator
(EOLFN
Community Lead)
The Community Lead was
also the Community
Facilitator and the
Naotkamegwanning Home
and Community Care Program
Coordinator (EOLFN
Community Lead)
In this thesis the Community Lead is identified as the: Home and Community Care Program
Coordinator (EOLFN Community Lead)
The Home and Community Care Program Coordinator (EOLFN Community Lead) liaised
between the stakeholder working group, the leadership team, the clinical team, the EOLFN
Research Team and the Home and Community Care Program to ensure the journey
mapping workshops and palliative care pathway were consistent with the goals of the
leadership team and community.
Prior to each journey mapping workshop, the Home and Community Care Program
Coordinator (EOLFN Community Lead) would work with the EOLFN Research Team and
Community Consultant via teleconference to discuss the agenda and handouts, ensure the
appropriate stakeholders were invited, coordinate logistics, and determine necessary
supplies. The Home and Community Care Program Coordinator (EOLFN Community
Lead) would then survey the stakeholders to determine a date and time for the workshop
and communicate the date and time when most stakeholders were available to attend the
workshop back to the EOLFN Research Team. Once a location had been secured, the
Community Lead would communicate that to the stakeholder working group.
The Home and Community Care Program Coordinator (EOLFN Community Lead) co-
facilitated or facilitated each of the journey mapping workshops with the exception of the
value stream mapping session. Following the introductions in the journey mapping
workshops, the Home and Community Care Program Coordinator (EOLFN Community
Lead) would share why journey mapping to create the palliative care pathway is important
to the community and invite community members to share stories about their family
members’ experiences.
Following each of the journey mapping workshops, the Home and Community Care
Program Coordinator (EOLFN Community Lead) worked with the Community Consultant
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Team name/Title Member(s)/description Activities/tasks
and Leadership Team to prioritize and complete the tasks that were identified in the journey
mapping workshops.
Community
Consultant
Due to the multiple roles and
heavy workload of the Home
and Community Care Program
Coordinator (EOLFN
Community Lead) held, the
EOLFN project hired a
Community Consultant to
assist the Community Lead
with the development of the
Wiisokotaatiwin Program.
The Community Consultant is
a retired registered nurse that
had previous program
development experience in
rural and remote Northwestern
Ontario communities.
The contribution of the Community Consultant was to provide assistance and support to the
Community Lead in implementing the palliative care path which was necessary to establish
the Wiisokotaatawin Program
Provide expertise related to rural and remote palliative care program development. The
Community Consultant attended all leadership team meetings in the community and
teleconferences with the EOLFN Research Team to prepare for the journey mapping
workshops. The Community Consultant contributed her previous expertise as an RN and
experience in program development to assist in guiding the community and Leadership
Team between journey mapping workshops.
EOLFN Research
Team
The EOLFN Research Team
involved in the journey
mapping workshops included
the Principal Investigator,
Project Manager, Interim
Project Manager, Research
Coordinator, and myself in
dual roles as a Research
Assistant and Graduate
Student Trainee.
Prior to each journey mapping workshop, preparation teleconferences would be held with
the EOLFN Research Team, the Community Lead and the Community Consultant. During
the teleconferences we created the workshop agenda, determined appropriate handouts for
the workshop packets, ensured the appropriate stakeholders were invited to the workshop,
discussed possible workshop dates and locations, and determined necessary workshop
supplies. In my role as a Research Assistant, I was responsible for taking meeting minutes
during these preparatory teleconferences.
Members of the EOLFN Research Team that attended the workshops in person are described in detail below. This section describes the EOLFN
Research Team members’ role during the workshop only and does not include the preplanning or post workshop activities which have already been
described.
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Team name/Title Member(s)/description Activities/tasks
EOLFN Research
Team
Principal Investigator During the journey mapping workshops, the contribution of the Principal Investigator was
to lead and oversee the research activities, including co-facilitation of the workshops. In the
three workshops that involved external stakeholders, the Principal Investigator introduced
the EOLFN project, read the information letter (when there were new attendees) and asked
new participants for their consent. In addition, the Principal Investigator provided an
update on the progress since the previous workshop to the stakeholder working group.
EOLFN Research
Team
Research Coordinator During the journey mapping workshops, the contribution of the Project Coordinator was to
prepare and present updates to the stakeholder working group on the overall progress of
EOLFN project, assist the Principal Investigator in obtaining signed consent forms, and
track time during the workshops to assist the workshop facilitator(s) with progression
through the agenda. She also assisted the facilitators by observing participants’ relational
dynamics and identified any issues with engagement or lack of understanding so they could
be brought to the facilitator’s attention and addressed.
EOLFN Research
Team
Research Assistant During the journey mapping workshops, my role as a Research Assistant was to take
meeting minutes, record attendance, take pictures and document observations and field
notes.
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Theme three: Journey mapping requires that communication is respectful of the
community’s beliefs.
Focus group participants from Naotkamegwanning indicated that culturally appropriate
communication that was respectful of the community’s beliefs was very important and therefore
should be incorporated throughout the journey mapping process. The importance of
communication was evident from my observations and field notes. The issue of language,
finding the right words to use, was the focus of much discussion during the focus group and
during the journey mapping. It was a major role for the Home and Community Care Program
Coordinator (EOLFN Community Lead) to explain the concept of palliative care in a culturally
appropriate way. The sub-theme of this major theme was that it requires journey mapping
workshops are conducted in a culturally relevant format.
Focus group participants agreed that it is not in their culture to plan or talk about death.
Use of the word palliative is not acceptable to the Elders and there is no translation in the
Ojibway language for the term palliative. The Naotkamegwanning Leadership Team chose the
Ojibway word “Wiisokotaatiwin” as the name of the community’s palliative care program. The
community describes “Wiisokotaatiwin” as “taking care of each other.” Focus group
participants agreed that other words (not palliative) should be used at all times.
The following conversation between an Elder and a community member HCP during the
focus group provides supporting evidence that use of the word palliative was not culturally
acceptable:
I think this is one of thee, uh, the fear of the warriors, especially Anishanabe when you
talk about death. You don’t talk about death, not a little bit… There’s a word that you
can find, that you’re gonna be taking care of, you’re gonna be looked after… There’s a
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way that you can find without using that word. And it’s, uh, real appropriate to
Anishanabe people. [Elder; Focus group]
That’s why we tried […] why in the beginning we said we don’t use that term, palliative,
so in the beginning we changed it to Wiisokotaatiwin. [Community member; Focus
group]
One Elder acknowledged an increased understanding about the meaning of palliative care
based on personal experience. The following quote provides insight:
Yeah. Just gotta […] change it over in your mind. What it’s all about and, and uh, I’m
looking after my mother, she’s 86, and uh, I’m understanding just working with her,
taking care of her, I’m starting to understand it more. Especially yesterday when I
panicked, I wasn’t home to give her supper and her medication, and (the Home and
Community Care Coordinator) already had somebody there to do that, so um, that was
really GOOD (emphasized). So we’ve always been careful about using that word.
[Elder; Focus group]
The following conversation provides additional evidence about how the community
thinks of palliative care, and that community members have been careful about the terminology:
And, […] it’s about making life as comfortable and as good for that person […] as it can
be. The way that they and their family choose. [Community consultant; Focus group]
Yeah, but I think we’ve all, we’ve been really careful about that since we, well since I’ve
been involved. [Elder; Focus group]
Focus group participants acknowledged how difficult the topic of death and palliative
care were to discuss. As documented in my field notes, when one participant mentioned their
struggles with these topics, the entire focus group nodded in agreement and several participants
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said “yes” or “mhm” to confirm they concurred. One Elder added the importance of
understanding the program and what it’s about:
About using that word, I think, I kind of struggled with it, I was kind of, ‘oh, I don’t
know’, and then you (points to community member) would explain it again, then I
would… ‘ok, that’s what it’s about.’ You explained it really well that one time in
Whitefish. I think that’s what changed my mind about it ‘cuz I was kind of thinking, uh,
I’ve always had this, uh, of stepping down from the leadership team, or from the program
because of what I understood about it, again and I was only thinking palliative care.
[Elder; Focus group]
The following field note also provides clarity on the way that one community member
thinks about the time when a person decides to come home from the hospital, or stay at home.
The community member stated “we are not talking about end-of-life, we are talking about
the moment when they decide they want to come home.” [Community member; Journey
mapping workshop #4; Field note]
Focus group participants shared that in their culture, they are taught not to prepare for the
worst, meaning they are taught not to prepare for death.
Some participants felt planning for one’s death or discussing death and dying are
culturally taboo, and some community members believe it can be detrimental. Evidence of this
perception is demonstrated in the following quote:
…The reason why I say that ‘cuz we were doing all this planning and speaking about all,
all this stuff what could happen, or what, ya know, bad stuff…and in the meanwhile
there’s like, a bunch of funerals happening. And we should have just been more mindful
of what we were doing, at the same time, and had that guidance that whole time. So,
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that’s kind of, you know, ‘cuz this is real hard stuff to talk about and deal with.
[Community member; Focus group]
Journey mapping workshops are conducted in a culturally relevant format
The language and approach used in the workshops to discuss the client journey and create
the care pathway also needed to be culturally relevant. The importance of this was evident during
workshop #2. A Toronto-based, Lean Sigma Black Belt facilitated workshop #2. This workshop
facilitator used value stream mapping terminology and lean-based concepts that were unfamiliar
to Naotkamegwanning community members, such as SIPOC: suppliers, inputs, process, outputs,
customers, and current state, future state, micro and macro steps, push and pull, flow, and
establishing the value stream. Community members disengaged from the workshop process
gradually over the day. As identified earlier, focus group participants indicated that community
members shut down and value stream mapping simply did not work.
The following field note identifies the challenges encountered during the value stream
mapping workshop:
It was evident early in the process that the value stream mapping tool was not the correct
tool to extract the necessary information. The process of mapping out detail and
speaking/planning for death was not synonymous with First Nation culture. While we
had a room of attendees eager and available to participate, another series of tools needed
to be utilized to draw out the required information.
The approach was then changed [for day two] to reflect more of an open discussion that
integrated the expectations of both the community and the health care providers. Health
care professionals and representatives from the community both had the opportunity for
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input into the discussion. Specific facilitated exercises were used to pull information
from the team. [Field note; Journey mapping workshop# 2]
To an Elder, the value stream mapping style workshop and facilitation style seemed
hurried. This is demonstrated in the following quote:
Yeah, it was really fast that first day, like we had all that stuff on the wall like bang,
bang, bang. Ya didn’t have time for it to soak in. Ya know? [Elder; Focus group]
According to one community member, “…I found that you guys (Elders) shut, you kind
of shut down and you kind of, the way that it was being facilitated that day, it didn’t, it wasn’t
familiar to us.”
This idea was also supported with the following field note:
During the break a EOLFN Research Team member was outside chatting with the Elders.
The EOLFN Research Team member asked them how they felt the session was going,
mentioning they were quiet and not participating. The Elders said that the words being
used and facilitation style are not familiar. One Elder felt overwhelmed. [Field note;
Journey mapping workshop #2]
Focus group participants felt that communication in the workshops was difficult
periodically for various reasons. While some participants felt they weren’t listened to at times,
others felt intimidated by the external health care providers. In addition, participants discussed
that communication was challenging when unfamiliar terminology was used, such as that
included in the value stream mapping workshop.
The following conversation demonstrates that Elders disengaged during the value stream
mapping workshops:
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Do you remember how, like that (value stream mapping session) went for you guys
(Elders)? What your thoughts and feelings about that session? Because I was saying, like
that morning, we could sense like you guys weren’t too involved, you guys seemed kind
of, I don’t know how to say it… [Community member; Focus group]
“I was overwhelmed.” an Elder replied.
But then in the afternoon…or the next day, it was more workshop-like. So you could talk
more freely. When you guys started to open up and share. [Community member; Focus
group]
That’s when we had [the doctor] in there…and that’s probably why we shut down
(laughs). [Elder; Focus group]
Focus group participants established that the value stream mapping session, simply
“didn’t work.”
I think we learned from that one (value stream mapping) that […] that facilitator, that
whole process with Toronto just didn’t work very well. Did it? When we just sort of
worked, um either just leadership team or with the care providers and just kind of used
common sense, it just seemed to go better, I think, from my point of view. [Community
Consultant; Focus group]
The journey mapping workshops were impacted by community events and cultural practices.
Focus group participants discussed how events that took place in the community affected the
entire community. For example, prior to the second journey mapping session, which was a two-
day workshop, there was a death in the community. This is documented below:
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There was also a death in the community a couple of days ago, and the community
members said they felt preoccupied, but they did not want to cancel this two-day
workshop. [Field note; Journey mapping workshop# 2]
Workshop participants wondered whether or not the Elders would request cancelling the
workshop out of respect for the deceased, however they did not. The impact of the death was
also discussed in the focus group, and participants indicated that even though it was a hard time,
they still made progress with the creation of the care path. The struggle community members
experienced is illustrated in the conversation below:
Oh, I was just going to say, I think if I remember too, um, there had, someone had passed
that… [Research team member; Focus group]
It was kind of hard. [Community member; Focus group]
Yeah, yeah. [Multiple participants agreeing; Focus group ]
It was a tough time. [Research team member; Focus group]
Yeah. Right. [Elder; Focus group]
Yeah, it was really hard that time. [Community member; Focus group]
So I guess we went through stuff like that that with still getting somewhere. [Elder; Focus
group]
Community members also preferred conducting the journey mapping through face-to-
face meetings as compared to teleconferences. They found teleconferences and video
conferences challenging and they appreciated that relationships developed better in face to face
meeting.
I think the good thing that came out of that journey mapping is that we got to see people
face-to-face, rather than by phone, and ya know, we put a name to the face and kinda got
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to meet people and these people came, got to see our community. [Community member;
Focus group]
I think even in between there we had these um, telephone conferences and video
conferences…So we had little mini, mini ones in between. And I think for me, that was
too hard because there were bits and pieces and we had to put it all together, ya know?
So that’s, that process I didn’t enjoy at all (laughs). It took a lot of time and, a, a lot of
work just getting it organized. Those sessions, I didn’t like at all. [Community member;
Focus group]
In terms of lessons learned, participants discussed alternate approaches to value stream
mapping and identified traditional ways of discussing information, such as the use of a sharing
circle. This idea is supported by the following quote:
Yeah, yeah. I just think sitting around and just having discussion, I think that’s what
worked. More from then, you guys [points to Elders] were giving more input.
[Community member; Focus group]
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Theme four: Journey mapping develops a culturally appropriate care pathway.
The Leadership Team wanted to ensure that the care pathway created through the journey
mapping was culturally appropriate. Throughout the first three journey mapping workshops that
included external health care providers, stakeholders created a nine stage palliative care pathway,
shown earlier in Figure 9. The activities of each stage were detailed in a large spreadsheet,
including what person or organization was responsible.
Focus group participants discussed the importance of respecting the community’s culture
and traditions. The focus group participants indicated that the external health care providers,
whose role was recognized as important in the care of the dying person during stages 1- 6 did not
need to be included when discussing cultural and traditional practices that were used at end of
life (stages 6-9). For the fourth and final workshop, community members met privately to ensure
culture and traditions were incorporated throughout all stages one through nine, with emphasis
on stages six through nine.
Sub-themes of this major theme are: (1) journey mapping includes Elder guidance
throughout the process, and (2) the care pathway is respectful of the individual’s wishes, values
and beliefs.
Journey mapping includes Elder guidance throughout the process
Both Elders and community members agreed that guidance from Elders should be sought
continuously throughout the journey mapping process. Elder guidance is important to the
community because the topics discussed throughout the journey mapping process are difficult.
As identified in the subtheme “ensure community readiness for journey mapping” the
community learned that there was hesitation in the beginning from some of the Elders and the
Home and Community Care Program Coordinator (EOLFN Community Lead) related to the
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research topic due to cultural teachings about death and dying; therefore Elder guidance was not
sought throughout the entire journey mapping process.
As one participant ruminated, planning to have an Elder present at each journey mapping
workshop would have provided guidance and leadership throughout the journey mapping
process. This idea is evidenced by the following quote:
The last meetings we’ve had, we’ve never had an Elder speak and set our mind straight
of the goal, and what not to think bad and what, what to think good, and then by
smudging and having an Elder speak that puts our mind where it should be, in the right
place. [Community member; Focus group]
Participants spoke about the inclusion of Elders several times, stating they get into work
mode, get busy and forget to seek Elder guidance. The following conversation between an Elder
and community member supports this idea:
I think me, and I’ll speak for myself and I think maybe like because I’m still learning
about our culture and our traditions, it’s… maybe I should have seeked more advice from
Elders on how to proceed with these kind of meetings, and our journey mapping, because
I think me, I was too in, um, not work mode, but (laughs) how do you say it?
[Community member; Focus group]
Concentrating on this (journey mapping). [Elder; Focus group]
I was so much concentrating on this and getting it DONE (emphasized). So I think I
should have sought more advice. [Community member; Focus group]
Another Elder added:
Yeah, I think, I think we should’ve had one (Elder) at every, every meeting that would’ve
been, that, I think that’s an important part of what we’re doing. [Elder; Focus group]
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One community member added the following comments to support Elder involvement in
the journey mapping process:
And, ya know we kind of talk lightly about it sometimes. And we gotta realize that, ya
know, it’s not in our culture to, to plan like this. So that’s why, you know, I feel more
comfortable when we do have an Elder around, ya know because it kind of keeps us all in
check. And, I mean it makes us mindful of everything. So, that’s one thing I think would
make, ya know, smoother meetings and stuff. Especially regarding, the stuff, the work
we’re doing. [Community member; Focus group]
Elders added to the discussion that it is important for everyone to remind each other that
an Elder should be present because sometimes even the Elders forget about the necessity of the
presence.
We always have to remind each other about this stuff because even an Elder-in-training
(laughs), ya know, sometimes I forget. You’re so busy day-to-day stuff. Just have to
remind each other (audible sigh). [Elder; Focus group]
In addition, Elders and community members agreed that arranging for a traditional
opening is important.
The importance of this practice is supported by the following quote:
Yeah, I think every meeting we should have had a traditional opening, because that is
such an important part of what we’re doing, even at the hospital, even if we had to do it
outside, I think, or even at home, before we left. [Elder; Focus group]
One of the journey mapping workshops took place in a meeting room at Lake of the
Woods District hospital. As described by the Elder in the previous quote, the importance of
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traditional opening is so meaningful, they would have done it outside, or at home in the
community prior to leaving for the workshop.
The care pathway is respectful of the individual’s wishes, values and beliefs
During the journey mapping, the community members developed detailed guidelines and
protocols regarding the behaviours of each group of health care providers. Guidelines were
created for each stage in the care pathway (Figure 9). These guidelines and protocols outlined
what needed to be done, what health care providers were involved and how they would work
together and with the clients and the families.
These guidelines were developed with the caveat that each client’s situation and
experience is unique. The guidelines emphasized that health care providers and care givers must
be aware the guidelines are just that, a guide that needed to be individualized. Those providing
care must be aware that deviation from the guidelines may be necessary so that each client’s
individual care experience is respectful of their unique wishes, values and beliefs. These wishes
values and beliefs need to be incorporated into day to day care. That includes offering traditional
healing practices if they are requested.
Throughout the journey mapping process, the community members felt it was difficult to
get their cultural view of the person acknowledged and valued by the external health care
providers. This is due, in part, to very different perspectives. The following quote discusses the
perceived difficulty uniting the Western healthcare model that focuses on applying science-based
best practices and Indigenous ways of knowing and caring:
If you recall, we identified nine steps in the care plan. The first five steps involved our
health care professionals, so that’s where they were giving all their input, and then, so I
think that’s where we kind of felt, um, how do you say it, where we weren’t listened to, I
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guess, you can say, but then in those five steps we could have given more of our cultural
input. Right? But here we do this, and we’re like, we could have, I guess trying to, trying
to incorporate that into their health, um, into their care. And then the steps six through
nine, that’s where we, we completed those steps where it involved us at the community.
[Community member; Focus group]
In addition, one Elder spoke about lack of understanding and negative perceptions
associated with the traditional ways of healing outside of the community:
I been trying to push out […] traditional ways for people to understand, like we don’t
even get funding for traditional healing, so we just do it anyway because […] the
traditional way works, but as long as you try to sell that to the, either the government, or
[…] anybody, they don’t want to see that it’s […] reliable tool to healing for Anishinaabe
people, […] ya know? They don’t want to understand that, ya know […] and I’ve been
stressing […] all the time, every time I talk to a group of people, I stress my traditional,
my understanding, because I know it works for me as an Anishinaabe person, but other
people, they just don’t want to see that... Like some of the doctors are starting to
understand it […], they’ll try to just, uh, understand the ways of the Anishinaabe people,
ya know, but when ya try and sell this kind of thing to a, a government, it’s just don’t
want to see it. …It really works for us as Anishinaabe people, but it’s always a problem
though, that no one understand us, ya know? They think we’re nuts as Elders, that uh, ya
know, they think we’re losing our minds, but it’s not, it works. Last night I was telling
[points to Elder] there was a whole bunch of us that went to the sweat lodge last night,
and we’re healing people that are really sick, you know, and uh so, it works. [Elder;
Focus group]
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The Elder continued discussing the lack of understanding about traditional healing and
the challenges with the government and health care providers accepting the value of traditional
ways. As expressed in the following quote, the Elder believes doctors in the Western health care
system try to supress the disease, while the traditional healers in the community try to cure the
person.
I always talk about my [family member] and I don’t know what kind of disease that
[family member] went through, ya know and don’t really understand the disease, but as
soon as the Elders got together, the disease… This kind of things eh that they don’t want
to understand, and this is what we should involve the program, really strong traditional,
but how do you sell that, because as soon as the government (inaudible word) says
they’re not going to fund it because it’s not, it’s not their way, it’s not what they have in
mind like the doctors, but what they have in their minds, the way they’re healing, ya
know. So, so we believe in healing but the doctors, doctors wants to kinda just lower
down, like I mean, supress it, but the sickness is always there. As soon as you stop taking,
that person, it comes up again, but Anishinaabe, when they start healing, they know what
they’re looking for something, that person should be cured. And that’s one of the
problems, the problems that we have, so how do you sell that to the government, eh.
[Elder; Focus group]
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Summary of qualitative findings
The lessons learned from the qualitative findings were identified and elaborated in these
findings. At the outset, journey mapping must be founded in the community’s vision for change.
Journey mapping also requires community planning which involves ensuring the community’s
readiness for journey mapping, and then obtaining community support, followed by creating
awareness. Journey mapping is a time commitment that involves face-to-face meetings on a
regular basis. Stakeholder commitment to journey mapping workshops and involvement in
creation of the care pathway is essential. Communication should be respectful of the
community’s beliefs, as death and dying are not discussed and palliative care is not a familiar
term in the Ojibway language. Journey mapping workshops should be in a format that is
culturally relevant and familiar; Western models, such as value stream mapping are not
recommended. Naotkamegwanning journey mapping was effective in creating a nine stage,
culturally appropriate care pathway, and Elder guidance is recommended throughout the journey
mapping process. Health care providers and care givers must tailor each client’s experience
through the care pathway to their individual wishes, values, and beliefs.
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Findings from the survey data
After completion of the journey mapping, the survey was sent to 16 members of the
stakeholder working group who were considered external to the community; 13 external health
care providers and 3 members of the EOLFN Research Team. Of the 16 surveys that were sent
out, there were 9 respondents, resulting in a 56.25% response rate. Respondents completed 24
questions: 14 rating scale questions and 10 open-ended questions. In this chapter, the survey
findings are displayed in two sections: (1) quantitative results of 14 rating scale questions,
summarized in a table and, (2) qualitative results of 9 open-ended questions, summarized by
grouping the responses, identifying themes, and a narrative interpretation.
Quantitative survey findings: Responses to rating scale statements.
Survey participants rated 14 statements related to the overall journey mapping experience
on a rating scale of 0-4 that included the following response options: don’t know, strongly
disagree, disagree, agree, and strongly agree (see Table 9). An even point scale of 1-4 was
selected for responses, and “don’t know” received the score of zero. The neutral option of
“neither agree, nor disagree” was deliberately not included to intentionally obtain a forced-
choice response, because a neutral response has the tendency to be a “catch all” category.
Table 9. Quantitative survey rating scale scores
Don’t know
(DK)
Strongly disagree
(SD)
Disagree
(D)
Agree
(A)
Strongly agree
(SA)
0
1
2
3
4
Dichotomization by grouping disagree and strongly disagree, and agree and strongly
agree was utilized to summarize the data because the data set is small. All nine respondents
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rated each statement 1 through 14 except for question nine in which one respondent did not
provide a rating. None (0%) of the survey respondents selected strongly disagree for any
statement 1 through 14. The results for each rating scale statement is summarized in Table 10
below.
Table 10. Quantitative survey rating scale summary
# Statement
Don’t
know
Disagree Agree
Response
Count
1
The Naotkamegwanning journey mapping
workshops helped me look at my work in a
different way than before.
1 1 7 9
11% 11% 78% 100%
2
The Naotkamegwanning journey mapping
workshops helped me better understand the roles
of the other care providers involved.
0 1 8 9
0% 11% 89% 100%
3
The Naotkamegwanning journey mapping
workshops helped me better understand the
policies and procedures (mandates) of the other
organizations involved.
0 0 9 9
0% 0% 100% 100%
4
The Naotkamegwanning journey mapping
workshops identified gaps and problems in service
delivery.
0 0 9 9
0% 0% 100% 100%
5
The Naotkamegwanning journey mapping
workshops identified new strategies to improve
communication, coordination and integration of
care delivery.
0 1 8 9
0% 11% 89% 100%
6
The Naotkamegwanning journey mapping
workshops helped me better understand the needs
and preferences of clients in Naotkamegwanning.
0 1 8 9
0% 11% 89% 100%
7
The Naotkamegwanning journey mapping
workshops generated commitment to solve service
delivery issues for residents of
Naotkamegwanning.
0 1 8 9
0% 11% 89% 100%
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# Statement
Don’t
know
Disagree Agree
Response
Count
8
The Naotkamegwanning journey mapping
workshops will help to improve care delivery for
Naotkamegwanning residents who are in the last
year of life.
1 1 7 9
11% 11% 78% 100%
9
I feel like my voice was heard in the
Naotkamegwanning journey mapping workshops.
1 0 7 8
12.5% 0% 87.5% 100%
10
I feel like the voice of the community members
was respected during the Naotkamegwanning
journey mapping workshops.
0 0 9 9
0% 0% 100% 100%
11
I feel like the views of the community members
were incorporated during the Naotkamegwanning
journey mapping workshops.
0 0 9 9
0% 0% 100% 100%
12
I feel external health care providers and
community members now better understand each
other.
1 1 7 9
11% 11% 78% 100%
13
The Naotkamegwanning journey mapping process
was effective to create a care pathway for
palliative care.
0 0 9 9
0% 0% 100% 100%
14
I recommend that other First Nations communities
do a journey mapping exercise to improve
palliative care in their community.
0 0 9 9
0% 0% 100% 100%
Summary of Table 10.
Overall the results of the rating scale were very positive and there was a high level of
agreement on most items amongst respondents.
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Service delivery related outcomes.
All (100%) of the respondents agreed that conducting the journey mapping had the
following benefits: helped me better understand the policies and procedures (mandates) of the
other organizations involved; identified gaps and problems in service delivery and was effective
to create a care pathway for palliative care. Further, most agreed or strongly agreed that the
workshops: identified new strategies to improve communication, coordination and integration of
care delivery; generated commitment to solve service delivery issues for residents of
Naotkamegwanning; will help to improve care delivery for Naotkamegwanning residents who
are in the last year of life.
Relationship building outcomes.
Most respondents agreed that: external health care providers and community members
now better understand each other; better understand the needs and preferences of clients in
Naotkamegwanning; better understand the roles of the other care providers involved; and look
at their work in a different way than before.
Journey mapping workshop process.
Regarding the process of conducting the workshops, all (100%) of the respondents agreed
that the voice of the community members was respected and the views of the community members
were incorporated. Most felt that their own voice was also heard in the workshops.
This finding is elaborated upon further in the discussion because it contradicts the
qualitative findings from the focus group participants (community members), who stated they
felt at times they were not listened to.
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Future journey mapping.
All (100%) of the respondents recommend that other First Nations communities do a
journey mapping exercise to improve palliative care in their community.
Qualitative survey findings: Responses to open-ended questions.
Survey participants were asked ten open ended questions including one “additional
comments” field. Participants were given the option to skip open-ended questions or leave them
blank and still progress through the survey. This option was given because not all of the open-
ended questions applied to each participant in the stakeholder working group (e.g. EOLFN
Research Team members). The majority of the questions were answered by all nine participants,
with the exception of “additional comments.” At most, three of the nine participants skipped any
given question. Therefore, there was a large amount of qualitative data.
For analysis, each response to the open-ended questions were summarized and three main
overarching themes were identified. The themes are: (1) journey mapping increased
communication and established partnerships, (2) journey mapping was a time commitment, and,
(3) journey mapping is recommended to create a care pathway.
Journey mapping increased communication and established partnerships.
Survey respondents indicated that the journey mapping workshops led to in increased
communication and established partnerships amongst community members, and internal and
external health care providers.
When asked what the most significant change or outcome of the journey mapping was,
respondents indicated that increased communication between the community and health care
providers was achieved. One respondent indicated stated there was an “increased awareness of
the need to facilitate (help promote) communication between organizations and the community.”
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When asked what the facilitators (catalysts) to the journey mapping workshops were,
respondents indicated that the use of Ontario Telemedicine Network (OTN) technology
increased communication between the participants from Naotkamegwanning/Kenora and those
in Thunder Bay during the third workshop which took place at Lake of the Woods District
Hospital in Kenora. While some members of the stakeholder working group from Thunder Bay
attended this workshop in person, the majority of the members were unable to attend in person
due to travel time and cost.
When asked if the journey mapping workshops gave new ideas about how to improve
care for residents of Naotkamegwanning, one health care provider indicated that “the
communication binder [in-home chart] did prove to be very helpful in home.” During the
journey mapping workshops, an in-home chart was identified as a need for clients on the
Wiisokotaatiwin Program. As a result of the implementation of the in-home chart,
communication within the circle of care was increased.
When asked the most valuable aspects of participating in the journey mapping
workshops, respondents indicated it was getting community members and providers together
face-to-face, establishing new partnerships, and learning each other’s roles and organizational
mandates. As one respondent expressed:
[The most valuable aspect of participating in the journey mapping was] meeting the
community members and learning the intricacies of service provision in the area, as well
as learning how providers can work together in more coordinated care to deliver
services in rural First Nations communities. [External partner survey respondent]
When asked what the crucial future steps to improve palliative care in
Naotkamegwanning are, respondents said continued communication and collaboration between
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the community and the external health care providers is necessary. One respondent said that
engaging policy makers would advance the changes that have taken place.
Journey mapping was a time commitment.
When asked what the barriers were during the journey mapping workshops, all
respondents identified time as a barrier, but the respondent’s description of why time was a
barrier was defined in various ways. Survey respondents expressed that journey mapping was a
time commitment, stating that the duration from start to finish was too lengthy, and the time
between workshops (six months) needed to be reduced. One respondent commented “the length
of time to complete the workshops was a barrier” indicating the overall process took too long
from start to finish (two years). Alternatively, two other respondents commented “we could have
used more time” suggesting more time was needed during the actual workshops to discuss and
work through processes, especially when issues, gaps and barriers were identified. According to
one respondent, “it took such a long time between workshops” however in another respondent’s
opinion, “it took time to help everyone see what the process required of them.” Respondents
also stated that the timing of workshops should be arranged to better accommodate external
stakeholder attendance. Additionally, one respondent commented that the least valuable aspect
of participating in the journey mapping workshops was the value stream mapping session
(workshop #2) because it “was a waste of time.”
Indirect comments related to time were the use of OTN in the third workshop as a method
of increased participation for members of the stakeholder working group located in Thunder Bay.
There were six participants that attended via OTN that otherwise would not have been able to
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participate due to the distance and travel time
9
. Adding to this idea was the various locations of
the journey mapping workshops, which were strategically selected for the convenience of the
stakeholder working group. One respondent stated:
I think the combination of locations of the workshops was a facilitator – it was important
to have the first one in the community with outside care providers travelling to the
community in order to show respect for the community, and to ensure external providers
who were going to make decisions and recommendations about care had actually seen
the community, but I think having the last couple in Kenora ensured a better attendance
by external providers, and was less distracting for community members, they were away
from their jobs and other responsibilities in the community.
[Survey respondent]
When asked how effective the journey mapping workshops were in creating a care
pathway for Naotkamegwanning clients in need of palliative care, respondents stated the goals
(creation of a care pathway) were achieved.
When asked what suggestions they had for First Nations communities conducting journey
mapping workshops in the future, there were comments related to reducing the amount of time in
the workshop by “having the current state mapped out [in advance]” suggesting that this could be
done internally within the community prior to bringing in external health care providers,
allowing more time to focus on the future state. One respondent said “I think the overall process
was excellent and [other First Nations communities] could replicate it more quickly and
effectively” suggesting the lessons we learned would abbreviate the process in the future.
9
Thunder Bay, ON to Kenora, ON is approximately 490 km and takes about 5-1/2 hours to drive (11 hours round
trip), depending on the time of year and road conditions/construction. Drive time combined with a half-day meeting
usually requires an overnight stay in Kenora.
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Journey mapping is recommended to create a care pathway.
Survey respondents agreed they would recommend journey mapping to create a care
pathway for First Nations community members that could benefit by palliative care. Survey
respondents also had suggestions on how to improve the journey mapping process for future use.
When asked what the most significant change or outcome of the journey mapping was,
one respondent indicated that “a care path was actually developed which will benefit the
community, and we had the opportunity to study the process and make recommendations on the
process for other communities.”
When asked the question “How effective were the journey mapping workshops in
creating a care pathway for Naotkamegwanning clients in need of palliative care?” the majority
of respondents stated the journey mapping workshops were “very effective” in creating the care
pathway. Some respondents offered additional comments stating that “we floundered a bit with
process, but I think the key in creating the care pathway is to get all the players together and
committed, and the workshops certainly accomplished that.” Another respondent stated that “we
needed to change the facilitation strategy to better engage the community members more
quickly.”
Survey respondents agreed that the value stream mapping process used in workshop #2
was not successful, nor was the facilitation style. Value stream mapping was identified as both a
barrier and the least valuable aspect of participating in the journey mapping workshops.
Respondents felt that value stream mapping disengaged community members and was
intimidating to them. They also felt that a “fancy process” was not needed, and one respondent
indicated to “keep it [journey mapping] simple.”
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When asked what the barriers during the journey mapping workshops were, one
respondent indicated that:
“the facilitation process of the February 2014 workshop [value stream mapping] was a
barrier because the value stream mapping process we tried to use was just not suited to
our task, and it was confusing and intimidating for community members.”
When asked what the least valuable aspect of participating in the journey mapping
workshops were, one respondent said “the facilitator from Toronto” and another respondent built
upon this idea stating “[the least valuable aspect of participating in the journey mapping
workshops was] the frustration of attending the [value stream mapping] workshop, where we had
excellent attendance by care providers and community members, but couldn’t make the process
work.”
Respondents suggested that the Home and Community Care Program Coordinator
(EOLFN Community Lead) facilitate or co-facilitate the workshops. One respondent appreciated
the facilitation style of the Principal Investigator and stated “[the Principal Investigator’s]
pointed questions and excellent information drawing techniques were key to moving the session
along.”
When asked what suggestions they had for First Nations communities that conduct
journey mapping workshops in the future, one respondent summarizes, by stating:
“I would strongly recommend journey mapping workshops as the most effective way of
developing a care path, which for all intents and purposes, is the [palliative care]
program; you need a good facilitator for the workshops who understands health care and
the community, but no need for processes – keep it simple: ‘what happens now?’ ‘What
do we want to happen?’ ‘What do we need to do to make that happen?”
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Summary of survey findings
Overall, the key findings were consistent in both sets of data collected in the survey.
The first theme to emerge from the open-ended questions, was that the journey mapping
workshops increased communication and established partnerships between community members
and health care providers. Survey respondents also agreed with the rating scale statements that
they felt the voices and views of community members were respected and heard.
The second theme to emerge from the open-ended questions, was that the journey
mapping workshops were a time commitment. One of the most time consuming components of
the journey mapping workshops was working through each of the nine stages in the care
pathway. In order to work through the care pathway, health care providers and community
members needed to understand one another’s policies and procedures to identify gaps and
problems in service delivery. While time consuming, the responses to the rating scale indicated
that as a result of the journey mapping workshops, health care providers better understand each
other’s mandates, and that gaps and problems in service delivery were identified during the
journey mapping workshops.
The third theme to emerge, and key takeaway from the survey was that all respondents
agreed that journey mapping is an effective tool to create the care pathway. This was a theme
identified from the open-ended questions and a rating scale statement that 100% of respondents
agreed with.
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Chapter 7: Discussion
This chapter begins with discussion on the most significant findings related to the
research questions posed in this thesis. Discussion of the effectiveness of journey mapping is
followed by additional discussion on the learnings and promising practices that emerged. The
chapter concludes with an exploration of the thesis findings relative to previous research, study
limitations, and implications for policy, practice, and future research.
Most significant findings
The key finding from this thesis research is that the Elders, community members, internal
and external health care providers and members of the EOLFN Research Team, who were the
stakeholders involved in the Naotkamegwanning journey mapping workshops, all recommended
journey mapping as an effective process to create a palliative care pathway for First Nations
communities. Over a period of two years in Naotkamegwanning, by implementing the principles
of PAR, an effective methodology for conducting journey mapping gradually evolved. These
emerging learnings and promising practices have been documented and analyzed for this thesis
research.
The findings of this thesis research have already contributed to the creation of a published
guide entitled “Conducting journey mapping to create a palliative care pathway for First Nations
communities: A step by step guide”. Based on the experience in Naotkamegwanning, the Guide
was developed for use by First Nations communities that wish to conduct journey mapping. This
guide is included as part of the “Developing Palliative Care Programs in First Nations
Communities: A Workbook” (EOLFN Research Team, 2015) which is a primary outcome of the
EOLFN project. Other First Nations communities have reported to the EOLFN project that they
are using the lessons learned in Naotkamegwanning and customizing the journey mapping guide
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for their own community. The role of the EOLFN research team to support their process, in the
future, can thus be accomplished by using the Workbook and Guide as resources.
Findings also indicated that journey mapping works best as part of a longer term
community capacity development process. Consistent with the perched eagle (see Figure 12),
journey mapping must be founded in the community’s vision for change and be guided by the
ethical principles of building community relationships and honouring the choices of the
community. It was led from within Naotkamegwanning by the Home and Community Care
Program Coordinator (EOLFN Community Lead) and required Elder support and community
support to be successful. The journey mapping workshops should also begin after a foundation
for implementing a palliative care program has been established. Consistent with the Process of
Palliative Care Program Development model (see Figure 1), Naotkamegwanning did substantial
preplanning and implemented many preparatory activities prior to the workshops, including a
community needs assessment, to prepare the community members.
Building community capacity is a slow incremental process and this is why the care
pathway ultimately took two years to complete. Initially, there was not enough Elder and
community support for journey mapping. However, when the term Wiisokotaatiwin began being
used (as opposed to palliative care or dying), Elders and community members started to
understand the vision and goal of the work being done and became more engaged. Strong
internal community leadership was key. The need to change terminology to be culturally and
community- appropriate was one of the issues identified during the journey mapping process and
rectified.
Discussion of lessons learned and promising practices
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Contribution of stakeholders was essential
Face-to-face stakeholder commitment for long term involvement was essential in the
journey mapping process and creation of the palliative care pathway. Planning by the leadership
team determined which stakeholders were most relevant to include in journey mapping before
the very first workshop. All stakeholders invited were involved in providing services to people
living in Naotkamegwanning and were personally motivated to improve quality of service. There
was a high level of retention of the stakeholders over the two-year period, with only a few
unavoidable changes due to retirement, illness or maternity leave. Face-to-face meetings were
always more productive than telephone, telemedicine or email communication.
Related to stakeholders’ involvement, another lesson learned was that external health care
providers needed support from their organization’s management to participate in the journey
mapping workshops. Participation required a major commitment of time and sometimes travel
or telemedicine costs. One participant, a nurse from a regional hospital, was so passionate about
how telemedicine could contribute to palliative care in Naotkamegwanning that she drove her
own car from Thunder Bay to Naotkamegwanning to participate in the first journey mapping
workshop. There were thus organizational costs for her time or travel to the journey mapping
workshops, so she needed the support and approval from her management to receive
reimbursement for costs incurred.
Each stakeholder had an important role in the journey mapping workshops and they were
all essential for moving forward the process and creation of that care pathway. To implement the
care pathway and provide services to the community members in the proposed new way,
stakeholder commitment needed to continue after the journey mapping workshops were
complete.
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Value stream mapping is not recommended
The standard value stream mapping approach as commonly used in quality improvement
in health services in Ontario did not enhance the journey mapping experience or facilitate the
creation of the palliative care pathway. In fact, this approach was a barrier. Therefore, it is not
recommended for use in other First Nations communities. Applying the guiding principles of the
Indigenous paradigm (Atkinson, 2001) is more appropriate.
The value steam mapping workshop facilitation style and lean terminology was
introduced because it is familiar to most health care providers and a key tool used in their own
settings. However, the approach proved unfamiliar to community members and did not resonate
with them. During the value stream mapping session, community members’ non-verbal body
language provided cues that they were not engaged and they did not participate in discussion. As
a result, the value stream mapping format and lean terminology were discontinued the day it was
introduced and the workshop format was revamped to a story telling exchange with terminology
that all stakeholders were familiar with. The workshop facilitator also sat down beside the
Elders to hear their wishes and concerns rather than continuing to stand for her presentation or
completion of process diagrams on the wall.
This new format was more consistent with the guiding principles of the Indigenous
paradigm (Atkinson, 2001) and it was well accepted by the external health care providers. Using
the experience of Journey Mapping Workshop #2, Table 11 below provides some examples of
how the guiding principles were implemented during the journey mapping workshop experience.
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Table 11. Guiding principles and examples of their use during journey mapping workshop #2
Guiding principle (Atkinson,
2001)
Example from journey mapping workshop #2 (Value
stream mapping)
Ways of relating and acting
within community with an
understanding of the principles
of reciprocity and responsibility
The workshop facilitator discussed the ground rules at the
beginning of the workshop, thus all stakeholders participated
in establishing these ground rules which ensured that they
were respectful for all participants involved.
A deep listening and hearing
with more than ears
The EOLFN Research Team members observed non-verbal
communication cues, such as lack of engagement, from
community members and Elders. During the morning coffee
break on the first day of workshop #2, the Research
Coordinator approached the Elders gathering outside to
explore why they weren’t participating. They stated that the
facilitation style was unfamiliar. Knowing this, the value
stream mapping format and terminology was abandoned
following the break.
A reflective non-judgemental
consideration of what is being
seen and heard;
During the journey mapping process, several gaps and
barriers were identified. Because of the relationships and
trust built during the face to face meeting, the stakeholder
working group functioned by problem-solving these issues
together. There was no hostility or defensiveness.
Having learnt from the listening
a purposeful plan to act with
actions informed by learning,
wisdom, and acquired
knowledge;
After the value stream mapping format was abandoned,
Elders and community members became more actively
involved and good progress on creating the care pathway was
made. All of those present made a commitment to continue to
work together to complete the palliative care pathway. At the
end of the workshop (#2), an action plan for next steps was
documented and reviewed with the stakeholders. After the
workshop a workshop report was created and distributed to all
the stakeholders.
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Workshop facilitators and all participants must remain culturally aware, be responsive
and continually monitor the audience
Workshop facilitators played a key role during the journey mapping workshops because
they must be aware of what the audience is telling them, in particular, non-verbally. The lesson
learned is that the facilitator must be aware of cues such as no eye contact, folded arms and other
cues that result in lack of participation. These cues also vary culturally between First Nations
participants and external health care professionals. As discussed in the last section, during
workshop #2, First Nations community members and Elders disengaged and did not participate
until the format of the workshop was abandoned and revised. Further, the focus group findings
indicated that community members felt intimidated and that at times they weren’t listened to.
Yet, the health care providers did not perceive this; they perceived that the community voice was
heard.
The differing expectations and opinions between community members and health care
providers is a lesson learned for future facilitation and stakeholders. The facilitator and other
stakeholders must all work to ensure that everyone gets a chance to participate and that all
stakeholders are listened to. Where possible, the facilitator should be a First Nations person or
co-facilitators can include one member of the community and one external person.
When necessary, the workshop facilitator should invite Elders or community members by
asking “what do you think?” to facilitate participation. Having a cultural guide such as an elder
in the workshop to consult and support also assists the facilitator. This promising practice
ensures that all voices are heard and avoids disempowerment.
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Journey mapping improved communication, improved service integration and
enhanced services
One of the most significant barriers to service integration and care delivery related to
communication problems between organizations and providers (e.g. use of consent forms,
documentation lacking or not shared). During the journey mapping workshops, stakeholders
collaborated on many initiatives for improving communication. The improved collaboration and
improved communication translated into better service integration and enhanced services for the
clients.
According to the survey data and workshop reports, the three main contributions to
improving system integration were: (1) review of, and improvement to the discharge planning
process, (2) review of, and improvement to the in-home chart, and, (3) addition of a tablet for the
use of the Ontario Telemedicine Network (OTN) in the community. Each of these is elaborated
below.
Revised and improved the discharge planning process. Prior to the journey mapping
workshops, discharge planning between the hospitals
10
and the community lacked effective
communication. Often clients requiring enhanced services would be discharged without
contacting the Home and Community Care Program Coordinator (EOLFN Community Lead) or
during times when the Home and Community Care Program office was closed and did not
provide service (evenings, weekends and holidays). This lack of communication resulted in
clients being discharged home from hospital without the proper equipment or home care services
in place to receive suitable care in their homes. Often, the consequence of the poor discharge
planning was that the client returned to the hospital for proper care.
10 Naotkamegwanning clients typically seek care at hospitals in Kenora, Thunder Bay, and Winnipeg.
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During the journey mapping workshops, the Home and Community Care Program
Coordinator (EOLFN Community Lead) and a regional Discharge Planner discussed how the
discharge process could be improved. The hospital then better understood the services of the
Home and Community Care program and the hours of operation. Together they created a plan
for whom to contact when the Home and Community Care Program Coordinator (EOLFN
Community Lead) was out-of-the-office (community nurse). This revised and improved the
process was then trialed and ultimately adopted once the care pathway was implemented.
In-home chart. As a tool to improve communication among providers, an in-home chart
was identified as a need for clients receiving enhanced services as part of the Wiisokotaatiwin
Program. This chart is a binder of information that can be left in the client’s home so that all
health care providers and family members had access to it. Pertinent medical and social
information, the care plan and the names and contact information for the health care providers
are included in the chart. This chart is commonly used by home care programs providing
palliative care in urban Ontario.
During the journey workshops, the stakeholder working group discussed ideas about how
the in-home chart could be utilized to increase communication among all members in the client’s
circle of care. A new process was developed that required home care providers to document any
adjustments to the care plan via the in-home chart. The process included a protocol for
caregivers and hospital staff to follow if a client is transferred to the hospital. When a client is
transferred to the hospital, care givers were instructed to provide the in-home chart to the
hospital providers. Hospital providers were instructed to document notes in the chart, whether it
be an emergency department visit or an admission. The in-home chart then returned with the
client when discharged from hospital.
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Use of Ontario Telemedicine Network (OTN) in the community. One of the
stakeholders involved in the journey mapping workshops was a regional nurse who shared
experiences using OTN for communicating with health care providers in other rural and remote
communities in Northwestern Ontario. During the journey mapping workshops, the nurse
provided insight on how a tablet and access to OTN could improve community health care
providers’ communication with health care providers located in urban centres. The EOLFN
Research Team then connected the Home and Community Care Program Coordinator (EOLFN
Community Lead) with an OTN telemedicine pilot project at the Thunder Bay Reginal Health
Sciences Centre that allowed the community to obtain access to the network and participate in
training. Telemedicine then became an option for community members, caregivers and family
members requiring health care appointments, both during normal business hours and after-hours
care. Telemedicine was also used during care conferences in the communities to connect with
regional palliative care experts. It should be noted, however, that since OTN is a program of the
provincial government and Home and Community Care Program is federal health service, often
OTN would not be available in a First Nation community. Naotkamegwanning remains on the
pilot program as of this date.
Journey mapping integrated the expectations of the community and the health care
providers
The journey mapping process provided an environment (time, place) and strategy for
promoting mutual understanding between the community and the external health care providers.
During the journey mapping it became clear that two distinct world views and their related
expectations existed pertaining to providing and receiving palliative care. Based on the thesis
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research, I have summarized these in the following Figure 13: Integrating the expectations of
both the community and external health care providers.
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Figure 13. Integrating the expectations of both the community and external health care providers
11
11
This figure was created based on the “Lessons learned for weaving Indigenous knowledge and mainstream science” in Bartlett et al. (2012, p. 4). The idea to represent the
information in a Venn diagram came from “Two-eyed seeing: A model for co-advancement” (Canadian Institutes of Health Research, 2011, p. 6) and “Palliative care programs for
First Nations communities: Integrating two systems” (EOLFN Research Team, 2015, p. 73).
Journey mapping
workshops
Terminology
Wiisokotaatiwin, palliative and
end-of-life care were used
Approach to care & Focus of care
Steps 1-5 of the nine stage care
pathway incorporated both Indigenous
and Western approaches
Steps 6-9 incorporated
Naotkamegwanning’s traditions
(Indigenous ways of knowing)
Terminology
Palliative care
End-of-life care
Approach to care
Formalized health care system
Science-based
Instutitional approach
Focus of care
Focus is on and treating the illness by using
medications
Embraces established best practices
Terminology
Wiisokotaatiwin
“Taking care of each other”
Approach to care
“Doing what we've always done"
Community-based
Traditional approach
Focus of care
Focus is based on respecting the clients’
wishes
Embraces traditional healing and
ceremonies (if desired)
Naotkamegwanning
First Nation
Western
Health Care
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In Figure 13, Indigenous and Western views that emerged during the journey mapping
process are shown on the left and the right, respectively. In Naotkamegwanning the words
“palliative care” and “end-of-life care” are not used; the community replaces these terms by the
phrase “taking care of each other” (Wiisokotaatawin). Naotkamegwanning’s approach to health
care is “doing what we’ve always done” and is community-driven. The foundation is based on
traditional approaches and focuses on the client’s wishes and traditions. The Western approach
to health care, alternatively, is founded on formalized health care principles and takes a science-
based, institutional approach that focuses on established best practices.
I created the figure “Integrating the expectations of both the community and health care
providers” using a Venn diagram format to provide myself with visual context before going into
the journey mapping process, and to identify the necessity for a place that creates mutual
understanding and bridges each world view. The workshops became a safe space for the
participants where the ethical principles of “building trusting relationships” and “honouring
community control” were exercised along with the principles of the Indigenous paradigm.
As illustrated in the center of the Venn diagram, it is necessary to “weave back and forth”
(Bartlett et al., 2012, p. 4) when referring to terminology, the approach to care, and the focus of
care. During the journey mapping workshops, community members discussed their traditions
and health care providers discussed organizational protocols. The care pathway incorporated
both of these. However, during journey mapping workshop #3, the community members decided
that external health care providers would only be involved in discussing stages 1-5 of the care
pathway and stages 6-9 would remain private to the community. That was because the role of
the health care providers was limited to treatment of the illness and related symptoms and did not
include being involved in the culture based approach to providing end-of-life care in the
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community. Thus external providers they did not need to know about local practices at end of
life.
Using journey mapping as a strategy for integrating the expectations of both the
community members and the external health care providers is not only consistent with the
Indigenous paradigm but also the “Lessons learned for weaving Indigenous knowledge and
mainstream science” in (Bartlett et al., 2012). Some examples of the applicability of Bartlett et
al. (2012) “Lesson’s learned” criteria to the journey mapping process are identified in the
following Table 12.
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Table 12. Lessons learned for weaving Indigenous knowledge and mainstream science and
examples of their use during the journey mapping process
Criteria (Bartlett et al., 2012) Example from journey mapping
Acknowledge that we need each
other and must engage in a co-
learning journey
A key lesson learned during the journey mapping process
was that stakeholder contribution and follow through was
essential. Multiple initiatives to improve communication
and collaboration were important to create needed health
care improvements based on shared expectations.
Be guided by Two-Eyed Seeing
When the value stream mapping format and terminology
were abandoned during journey mapping workshop #2, the
two-eyed seeing strategy was suggested by the Principal
Investigator as an engagement strategy to bring together
Indigenous and Western ways of knowing (Bartlett et al.,
2012).
Use visuals Visual diagrams of the current state (in 2013) and the
desired future state were used throughout the journey
mapping. The figure of the nine stage care pathway was
designed by the community to guide their work in
providing palliative care.
Weave back and forth between our
worldviews
As illustrated in the Venn diagram and described earlier, it
is necessary to weave back and forth when referring to
terminology, the approach to care, and the focus of care.
Develop an advisory council of
willing, knowledgeable
stakeholders, drawing upon
individuals both from within the
educational institution(s) and
within Aboriginal communities
The stakeholder working group that participated in the
journey mapping workshops involved community
members, Elders, internal and external health care
providers, and the EOLFN Research Team based at the
Centre for Education and Research for Aging & Health
(CERAH) at Lakehead University.
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Contribution of findings to literature on palliative care in First Nations communities
In my literature review, no literature could be found that investigated First Nations
journey mapping as either a general strategy to improve community health services or as a
process to create a palliative care pathway. Therefore, this thesis research can fill a literature gap
by providing a case study of using a journey mapping process to create a palliative care pathway
for a rural First Nation community in Northwestern Ontario.
This research has also contributed new knowledge that value steam mapping as a quality
improvement strategy practiced in urban health organizations may not be effective for use in
First Nations communities. Through this research, the goals of value stream mapping to improve
quality and effectiveness of services were achieved using a modified process that is more
culturally appropriate. This research has led to developing culturally appropriate, promising
practices for First Nations communities seeking to create a palliative care pathway using journey
mapping.
This research has contributed to creating new concepts and definitions that can advance
implementation of First Nations journey mapping to create palliative care pathways in the future.
The strategy of creating care pathways could also be employed for improving care for people
with other care needs, for example dementia or diabetes. As a result of the EOLFN research and
this thesis research two unique definitions have been produced: (1) First Nations journey
mapping, and (2) First Nations palliative care pathway. These definitions are provided below.
First Nations journey mapping refers to a process to improve the coordination and
integration of care for clients as they access services from multiple programs and health care
providers. It is done using a workshop format that brings together internal and external health
care providers, Elders, and community leadership. It involves in-depth discussion of how First
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Nation community members transition through the health care system as they approach end of
life, and identifies obstacles and solutions to improve service integration (EOLFN Research
Team, 2015).
First Nations palliative care pathway, or path of care, refers to a diagram or map that
outlines the expected care for clients who would benefit by receiving palliative care, including
the appropriate timeframes for different phases of palliative care. The care pathway is created by
a group of involved care providers during a series of journey mapping workshops in order to
become a resource that will guide care for individuals progressing through their care and
treatment. The care pathway focuses on providing clients the best palliative care and most
positive outcomes as they move between different health care providers and organizations.
(EOLFN Research Team, 2015)
Study limitations
This thesis research has provided a number of valuable lessons learned and promising
practices related to conducting journey mapping to design a palliative care pathway in a First
Nation’s community, but they findings cannot be generalized to other communities in
Northwestern Ontario, provincially or nationally until additional research has been done. That
limitation is inherent in the instrumental case study design which is intended to examine
individual case in depth rather than to generate findings with broad generalizability. The goal of
the thesis research was in-depth analysis on one case.
The majority of the data analyzed in this thesis were existing data analysis collected over
two years by the EOLFN project. This dataset could be considered a limitation because the
previously collected data was not collected with my research questions in mind. Thus I was
limited by what the data were. However, I did collect some primary data at the end of the journey
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mapping specific to my thesis. I also had access to participants via telephone or email. No
ambiguities or unanswered questions arose during data analysis that needed clarification.
The length of time the journey mapping process took from preplanning before the first
workshop to the time focus group and survey data was collected could be considered a limitation
because it was a two-year process in total. Fortunately, I was a Research Assistant on the
EOLFN project for five years and directly involved in the entire two years of the journey
mapping process. During the two years, I attended all of the workshops to participate in data
collection. In the focus group and surveys that took place after the workshops were completed,
some of the participants expressed difficulty recalling details from the early sessions. However,
the workshop data collected during the two years was consistent with the data collected from the
focus group and survey. This consistency indicates that saturation was achieved and that the data
are reliable.
Implications of findings for policy
As Canada moves towards a national strategy on palliative care, providing palliative care
as part of the federal government’s First Nations Inuit Health Branch Home and Community
Care Programs is a critical need but currently an unrealized reality. Palliative care is not funded
as an essential service by the federal government and current funding levels for Home and
Community Care are insufficient to provide palliative home care. Creating collaborations and
partnerships between the federal and provincial health systems and local First Nations
communities are one solution. Federal policy makers must find ways to address the jurisdictional
issues that currently exist. In the thesis research, journey mapping facilitated overcoming
jurisdictional barriers through creating relationships and collaborations between federal and
provincial health services at the local community level. The Ontario region of Home and
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Community Care has already implemented a pilot project with approximately 30 First Nations
communities to develop palliative care programs and implement journey mapping, using the
EOLFN workbook and journey mapping guide (M. L. Kelley, 2016).
The Ontario Ministry of Health and Long Term Care has endorsed a declaration to
advance high quality, high value palliative care in Ontario, regardless of where people live
(Quality Hospice Palliative Care Coalition of Ontario, 2011). Each of Ontario’s fourteen LHINS
are now mandated to implement regional palliative care programs that is inclusive of First
Nations communities. However, there is no provincial model or additional funding to extend the
provision of palliative and end of life care to First Nations communities. Each LHIN in Ontario
must address the needs of their population.
The findings from this case study are timely because researchers in Canada and
internationally are promoting public health as the new paradigm for health policy related to
palliative care. From September 18-20, 2017, Canada will host the 5
th
International Public
Health and Palliative Care Conference in Ottawa, Ontario. The International Public Health and
Palliative Care Conference advocates for taking a global, public health approach to palliative
care that enhances the quality of life and death for all people (Pallium Canada, 2015). This is an
appropriate policy paradigm to address the palliative care needs of First Nations communities as
it includes community development as a primary strategy and acknowledges the need to address
the social determinants of health. Journey mapping has a potential role to play in implementing
a public health approach to palliative care.
Implications for practice
The lessons learned from the Naotkamegwanning journey mapping workshops have
provided promising practices that can be used as a foundation in the development of standardized
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approaches to providing palliative care in First Nations communities regionally, provincially or
nationally. For example, the nine stage palliative care pathway that was developed is a
promising practice that can be used as a starting point for the desired future state. Additionally,
based on the lessons learned from the thesis, value stream mapping should be avoided in First
Nations communities.
A Regional Palliative Care Program for Northwestern Ontario has been created with the
mandate of implementing the recommendations of the NWLHIN’s Regional Palliative Care Plan
(North West Local Health Integration Network, 2014). A version of journey mapping presented
in this thesis is currently being conducted in the NWLHIN catchment area, which includes First
Nations communities and rural and remote communities. Journey mapping is seen by the
regional program staff as a valuable strategy to promote system integration at the level of patient
experience because it links back to the popularity of value stream mapping with health care
providers. It has also been shown to be relevant and effective for use in First Nations
communities through this thesis research.
Implications of findings for future research
The findings of this research can now be examined for their relevance and applicability in
other First Nations communities in our region, in Ontario and in Canada. Future researchers may
explore partnership with one or more First Nations communities in PAR projects focused on
palliative care that use journey mapping as a tool to create the palliative care pathway for
community members that want the choice to die at home. When engaging in similar research,
researchers must partner with leadership in the community, identify a local champion
(Community Lead) and establish a leadership team that provides local control and guidance. The
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community will then identify their vision and with appropriate preparation journey mapping can
be undertaken at that time.
Alternatively, First Nation’s communities may choose to develop their own palliative
care programs using the workbook created by the EOLFN research project entitled “Developing
palliative care programs in First Nations communities: A Workbook” (EOLFN Research Team,
2015). Researchers could collaborate with these communities to evaluate the outcomes of their
work and evaluate the effectiveness of the workbook and journey mapping guide as a community
based tool.
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Chapter 8: Conclusion
The purpose of this thesis research was twofold. First, I analyzed the process of journey
mapping to create the care pathway for integrated palliative home care for Naotkamegwanning
community members who choose to die at home. Journey mapping was perceived to be an
effective strategy to create a palliative care pathway by all involved stakeholders. Second, I
identified learnings and promising practices that informed the development of an EOLFN
workbook tool on journey mapping for use by other First Nations communities. The participatory
action research (PAR) methodology was suitable for this case study because evaluation is
embedded within the cycle of PAR, and therefore that methodology was appropriate for the
purpose of the research.
This thesis research embraced an Indigenous paradigm as its theoretical perspective and
the lessons learned and promising practices that resulted from this case study were consistent
with the principles of the Indigenous paradigm. The findings produced a perched eagle figure
called “Conducting effective palliative care journey mapping: Learnings and promising
practices.” The perched eagle figure resulted from the qualitative findings and included a
grounding theme and four overarching themes.
The grounding theme “Journey mapping must be founded in the community’s vision for
change” emphasized that the community must perceive and articulate expected benefits for its
members before undertaking the journey mapping process to create the palliative care pathway.
This idea of grounding every action in community values and principles is also consistent with
the community capacity development model “Process of Palliative Care Program Development”
that guided all of the strategies to help build community capacity in palliative care. Two ethical
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principles emerged, which were “building trusting relationships” and “honouring the choices of
the community.”
The first overarching theme, journey mapping requires community planning, identified
the importance of community support and awareness to ensure the community’s readiness for
journey mapping. The second overarching theme, journey mapping requires time commitment,
described the lessons learned related to time and identified that journey mapping could not be
completed without stakeholder contribution and follow through. The third overarching theme,
journey mapping requires that communication is respectful of the community’s beliefs, revealed
that journey mapping workshops must be conducted in a culturally relevant format that is
familiar to the community. The fourth overarching theme, journey mapping develops a
culturally appropriate care pathway, established the importance of Elder guidance throughout the
journey mapping process and that the journey mapping workshops ultimately resulted in a care
pathway that is respectful of the individual’s wishes, values and beliefs.
The findings from this thesis revealed that journey mapping is a promising practice to
help navigate jurisdictional issues between the federal and provincial governments for providing
palliative care services in First Nations communities. A shift in Canadian health care policy that
includes an infusion of funding to fill the existing service gaps is urgently needed to support
capacity development and integrated palliative care as part of local Home and Community Care
Programs. Attention to the geographic, socioeconomic and technological barriers faced by First
Nations communities in Northwestern Ontario will further support community capacity
development.
A public health approach to palliative care is an appropriate policy paradigm to address
the palliative care needs of First Nations communities because it includes community
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development as a primary strategy and acknowledges the need to address the social determinants
of health.
Implementing strategies such as journey mapping will support First Nations people to
receive palliative care at home if that is their choice. Journey mapping could also further reduce
costs and burden to the health care system by allowing First Nations people to receive palliative
care services in their home communities and avoid unnecessary transfers to acute care that
uproot them and their families from their community and culture.
The journey mapping workshops developed an innovative and effective process for
Naotkamegwanning First Nation to create their palliative care pathway. The promising practices
and lessons learned from this research can be used to guide other First Nation’s communities and
participating stakeholders in creating a culturally appropriate care pathway.
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Lexicon of terminology discussed in this thesis
Aboriginal peoples: The descendants of the original inhabitants of North America. The
Canadian Constitution recognizes three groups of Aboriginal people — Indians, Métis and Inuit.
These are three separate peoples with unique heritages, languages, cultural practices and spiritual
beliefs. (Government of Canada. Aboriginal Affairs and Northern Development Canada, 2012)
First Nation: A term that came into common usage in the 1970s to replace the word "Indian,"
which some people found offensive. Although the term First Nation is widely used, no legal
definition of it exists. Among its uses, the term "First Nations peoples" refers to the Indian
peoples in Canada, both Status and non-Status. Some Indian peoples have also adopted the term
"First Nation" to replace the word "band" in the name of their community. (Government of
Canada. Aboriginal Affairs and Northern Development Canada, 2012)
First Nations palliative care pathway: Refers to a diagram or map that outlines the expected
care for clients who would benefit by receiving palliative care, including the appropriate
timeframes for different phases of palliative care. The care pathway is created by a group of
involved care providers during a series of journey mapping workshops in order to become a
resource that will guide care for individuals progressing through their care and treatment. The
care pathway focuses on providing clients the best palliative care and most positive outcomes as
they move between different health care providers and organizations. (EOLFN Research Team,
2015)
First Nations Journey map: Refers to a process to improve the coordination and integration of
care for clients as they access services from multiple programs and health care providers. It is
done using a workshop format that brings together internal and external health care providers,
Elders, and community leadership. It involves in-depth discussion of how First Nation
community members transition through the health care system as they approach end of life, and
identifies obstacles and solutions to improve service integration. (EOLFN Research Team,
2015)
Palliative care: Palliative care is an approach that improves the quality of life of patients and
their families facing the problem associated with life-threatening illness, through the prevention
and relief of suffering by means of early identification and impeccable assessment and treatment
of pain and other problems, physical, psychosocial and spiritual. (World Health Organization,
2015)
Participatory action research: Is a period of inquiry that describes, interprets and explains
social situations while executing a change intervention aimed at improvement and involvement.
It is problem-focused, context-specific and future-oriented (Waterman, Tillen, Dickson, & de
Koning, 2001). In participatory action research, the degree of participant involvement varies on
a continuum from researchers consulting the community’s view (least involvement); to designing
the study and then collecting data with the help of the community; to the community working
closely with researchers; to total participant control (most involvement) (M. L. Kelley & McKee,
2013; S. Kemmis & R. McTaggart, 2005).
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Reserve: Tract of land, the legal title to which is held by the Crown, set apart for the use and
benefit of an Indian band. (Government of Canada. Aboriginal Affairs and Northern
Development Canada, 2012)
Value stream: all the actions (both value added and non-value added) currently required to bring
a product through the main flows essential to every product: (1) the production flow from raw
material into the arms of the customers, and (2) the design flow from concept to launch. Taking
a value stream perspective means working on the big picture, not just individual processes; and
improving the whole, not just optimizing the parts. (Rother & Shook, 1999)
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World Health Organization. (2014). Genes and noncommunicable diseases. Retrieved from
http://www.who.int/genomics/public/geneticdiseases/en/index3.html
World Health Organization. (2015). WHO Definition of Palliative Care. Retrieved from
(http://www.who.int/cancer/palliative/definition/en/)
World Health Organization Regional Office for Europe. (2004). Palliative care. The solid facts E. Davies &
I. J. Higginson (Eds.), (pp. 32). Retrieved from
http://www.euro.who.int/__data/assets/pdf_file/0003/98418/E82931.pdf Retrieved from
http://www.euro.who.int/__data/assets/pdf_file/0003/98418/E82931.pdf
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Appendices
Appendix A: Focus Group Information Letter (for the current study) .............................................. 188
Appendix B: Wiisokotaatiwin Program Journey Mapping: Focus group guide ................................ 190
Appendix C: Lakehead REB focus group approval letter .................................................................. 191
Appendix D: Original Information Letter (overall EOLFN project) ................................................. 192
Appendix E: Original Informed Consent (overall EOLFN project) .................................................. 194
Appendix F: Student investigator TCPS certificate ........................................................................... 195
Appendix G: Lakehead University REB “paperless” approval of thesis ........................................... 196
Appendix H: Email body for on-line survey participants .................................................................. 197
Appendix I: Survey Participant Information Letter and Consent ...................................................... 198
Appendix J: External health care provider and research team survey ............................................... 199
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Appendix A: Focus Group Information Letter (for the current study)
Centre for Education and Research on Aging & Health
t: (807) 766-7274 f: (807) 766-7222
mlkelley@lakeheadu.ca
Wiisokotaatiwin Program Journey Mapping:
Focus Group Participant Information Letter
INFORMATION SHEET
Dear Potential Participant,
As a participant in the journey mapping workshops that took place from August 2013 – October
2014, you are invited to participate in a focus group about your overall experiences with creating
a care pathway for Naotkamegwanning clients that are very very sick. The information collected
from this focus group will be used to create a journey mapping workshop workbook for other
First Nation’s communities and become part of a Lakehead University master’s thesis entitled
“A case study of journey mapping to design a palliative care pathway for Naotkamegwanning
First Nation: A qualitative evaluation.” The Research Assistant and Graduate Student for this
research is Jessica Koski and the Principal Investigator and thesis supervisor is Dr. Mary Lou
Kelley, Lakehead University, Thunder Bay, Ontario.
This focus group is a sub-study of the five-year project titled “Improving End-of-Life Care in
First Nations Communities: Generating a Theory of Change to Guide Program and Policy
Development” which is led by Dr. Mary Lou Kelley and funded by the Canadian Institutes of
Health Research.
Your participation in this focus group is voluntary and you refuse to participate in any part of the
focus group, decline to answer questions, or discontinue participation at any time during the
focus group. The focus group will be audio-taped, and at the beginning, you will be asked for
verbal consent because you have already signed a consent to participate in the overall research
project. When you are asked for your verbal consent to participate, you may decline to be audio-
taped and that will be respected.
It is not anticipated that there are risks to your safety by participating in this focus group,
however, because the topic of the research involves the issue of Naotkamegwanning clients that
are very, very sick, we recognize that some focus group questions may be of a sensitive and
personal nature. Should you have difficulty and require support following the focus group, you
be assisted to access support and counselling services. Access to support resources will be
organized in advance and appropriate assistance will be identified by the community Project
Advisory Committee.
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The information that you provide will remain confidential and securely stored at Lakehead
University for five years and will be accessed only by the researchers and staff involved in the
project. Please note that the confidentiality of focus group participants cannot be fully guaranteed
due to the group format. However, all participants are encouraged to respect the privacy of
individuals taking part in the group.
The findings from this focus group may be presented at conferences or published in a journal so
that others may learn from it, ensuring confidentiality of the participants. In all cases, findings
will be reported in non-identifying and summary format, conforming to the guidelines for
research ethics at Lakehead University and no individual participants will be identified in
published results without their explicit consent. When direct quotes are used in writing to support
research findings, only “Naotkamegwanning community member” or “Naotkamegwanning
Elder” will be used.
Participants in this focus group will be asked to provide feedback following the analysis to
ensure their thoughts have been properly documented. The community will receive a copy of the
final thesis, upon its completion.
If I have any questions concerning the project, please feel free to contact: Jessica Koski,
Research Assistant and Graduate Student, Master of Health Sciences program, Lakehead
University (807) 766-7299 or jkoski@lakeheadu.ca
Dr. Mary Lou Kelley, School of Social Work, Lakehead University at (807) 766-7270 or by e-
mail at mlkelley@lakeheadu.ca
Lakehead University Research Ethics Board at (807) 343-8934.
Thank you for your time and consideration.
Jessica Koski, Research Assistant & MHSc (candidate)
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Appendix B: Wiisokotaatiwin Program Journey Mapping: Focus group guide
From your perspective:
1. What was the purpose of the journey mapping? Did it meet your expectations?
2. Do you think community members could voice their views during the workshops? Do you
feel your voices were heard during the workshops?
3. What were the barriers and facilitators during the journey mapping?
a. Probes: location, time, facilitation style, participants, etc.
b. Probe for “stop/start/continue” to revise the protocol
4. Was the journey mapping successful in helping the Naotkamegwanning community?
a. Please provide examples or details if you can
5. What was the most significant benefit/change for your community members?
a. Probe: What of all those things discussed was most significant?
6. Do you think external health care providers and community members now better understand
each other?
7. What remains unfinished?
8. Would you recommend other First Nations communities do a journey mapping exercise like
you did?
9. Any other comments?
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Appendix C: Lakehead REB focus group approval letter
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Appendix D: Original Information Letter (overall EOLFN project)
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Appendix E: Original Informed Consent (overall EOLFN project)
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Appendix F: Student investigator TCPS certificate
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Appendix G: Lakehead University REB “paperless” approval of thesis
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Appendix H: Email body for on-line survey participants
Dear journey map working group participant,
As a participant in the journey mapping workshops that took place from August 2013 – August
2014, you are invited to complete a 15 minute survey about your overall experiences with
creating a palliative care pathway for Naotkamegwanning clients.
The information collected from this survey will be used to create a journey mapping workshop
workbook for other First Nation’s communities and become part of a Lakehead University
master’s thesis entitled “A case study of journey mapping to design a palliative care pathway for
Naotkamegwanning First Nation: A qualitative evaluation.” The Research Assistant and
Graduate Student for this research is Jessica Koski and the Principal Investigator and thesis
supervisor is Dr. Mary Lou Kelley, Lakehead University, Thunder Bay, Ontario.
This research is part of a sub-study of the five-year project titled “Improving End-of-Life Care in
First Nations Communities: Generating a Theory of Change to Guide Program and Policy
Development” which is led by Dr. Mary Lou Kelley and funded by the Canadian Institutes of
Health Research.
If I have any questions concerning the project, please feel free to contact: Jessica Koski,
Research Assistant Centre for Education and Research on Aging & Health (CERAH) and
Graduate Student, Master of Health Sciences program, Lakehead University (807) 766-7299 or
jkoski@lakeheadu.ca
Dr. Mary Lou Kelley, School of Social Work, Lakehead University at (807) 766-7270 or by e-
mail at mlkelley@lakeheadu.ca
Lakehead University Research Ethics Board at (807) 343-8934.
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Appendix I: Survey Participant Information Letter and Consent
The information collected from this survey will be used to create a journey mapping workshop workbook
for other First Nation’s communities and become part of a Lakehead University master’s thesis entitled
“A case study of journey mapping to design a palliative care pathway for Naotkamegwanning First
Nation: A qualitative evaluation.” The Research Assistant and Graduate Student for this research is
Jessica Koski and the Principal Investigator and thesis supervisor is Dr. Mary Lou Kelley, Lakehead
University, Thunder Bay, Ontario.
This research is part of a sub-study of the five-year project titled “Improving End-of-Life Care in First
Nations Communities: Generating a Theory of Change to Guide Program and Policy Development”
which is led by Dr. Mary Lou Kelley and funded by the Canadian Institutes of Health Research.
Although your responses may be linked to your email address, the information that you provide in this
survey will be confidential and de-identified. There are no known safety risks to participate in this survey.
The data will be securely stored in a de-identified manor at Lakehead University for five years and only
be accessed by the researchers and staff involved in the overall project. You may withdraw at any time
and or refuse to answer any question, without suffering any negative consequences. If you choose to
withdraw, all data gathered until the time of withdrawal will be securely deleted.
The findings from this survey may be presented at conferences or published in a journal so that others
may learn from it, ensuring confidentiality of the participants. In all cases, findings will be reported in
non-identifying and summary format, conforming to the guidelines for research ethics at Lakehead
University and no individual participants will be identified in published results without their explicit
consent. When direct quotes are used in writing to support research findings, only “internal/external
health care provider” or “social service provider” will be used.
Participants in this survey will be invited to provide feedback following the data analysis to ensure their
thoughts have been properly documented. Participants will receive an electronic copy of the final thesis,
upon its completion.
If I have any questions concerning the project, please feel free to contact: Jessica Koski, Research
Assistant Centre for Education and Research on Aging & Health (CERAH) and Graduate Student, Master
of Health Sciences program, Lakehead University (807) 766-7299 or jkoski@lakeheadu.ca
Dr. Mary Lou Kelley, School of Social Work, Lakehead University at (807) 766-7270 or by e-mail at
mlkelley@lakeheadu.ca
Lakehead University Research Ethics Board at (807) 343-8934.
______________________________________________________________________________
I have read the above information letter and consent to participate in this study.
Yes (go to Q1) No (end survey)
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Appendix J: External health care provider and research team survey
Your information:
Please indicate which of the folowing groups you belong to:
External heath care provider to Naotkamegwanning
Research team
Your opinion:
For the folowing statements, please select the number that
represents your opinion of the journey mapping workshops.
Str
ong
ly
dis
agr
ee
Dis
agr
ee
Agr
ee
Str
ong
ly
agr
ee
Don
’t
kno
w
The journey mapping workshops helped me look at my
work in a diferent way than before. 1 2 3 4
The workshops helped me beter understand the roles of
the other care providers involved. 1 2 3 4
The workshops helped me beter understand the policies
and procedures (mandates) of the other organizations
involved.
1 2 3 4
The workshops identified gaps and problems in service
delivery. 1 2 3 4
The workshops identified new strategies to improve
communication, coordination and integration of care
delivery.
1 2 3 4
The workshops helped me beter understand the needs and
preferences of clients in Naotkamegwanning. 1 2 3 4
The workshops generated commitment to solve service
delivery issues for residents of Naotkamegwanning. 1 2 3 4
The workshops helped improve care delivery for
Naotkamegwanning residents who are in the last year of
life.
1 2 3 4
I feel like my voice was heard in the workshops. 1 2 3 4
I feel like the voice of the community members was
respected during the workshops. 1 2 3 4
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I feel like the views of the community members were
incorporated during the workshops.
1 2 3 4
I feel external health care providers and community
members now better understand each other.
1 2 3 4
The journey mapping process was effective to create a care
pathway for palliative care in Naotkamegwanning
1 2 3 4
I recommend other First Nations communities do a journey
mapping exercise.
1 2 3 4
For the following questions, please describe your opinion of the journey mapping workshops.
In your opinion, what was the purpose of the journey mapping?
What were the barriers during the journey mapping?
Things to consider include: location, timing, facilitation style, organization, use of technology,
comfort of the environment for expressing views, cultural responsiveness.
Please list the barriers:
What were the facilitators during the journey mapping?
Things to consider include: location, timing, facilitation style, organization, use of technology,
comfort of the environment for expressing views, cultural responsiveness.
Please list the facilitators:
Did the workshops give you new ideas about how to improve care for the residents of
Naotkamegwanning?
Examples to consider: palliative care education, culturally appropriate care and training.
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What was the most significant change or outcome for your organization?
What worked well in the journey mapping workshops?
What did not work well in the journey mapping workshops?
What suggestions do you have for the future?
What remains unfinished?
Additional comments:
Thank you for taking the time to complete this survey.
The results will be shared with you via email in the form of a report.