Factors affecting women's caregiving decision-making to accept or decline formal and/or informal support

Abstract

This thesis examines the social conditions and factors that influenced a group of women caregivers to accept or decline support in the provision of care to terminally-ill family members or relatives. I discuss the long-term impact the provision of such care may have on women caregivers' own health, and the implications this may have for more appropriate allocation of health care resources in the future. I discuss social expectations regarding the gender of caregiving, and the extent to which this group of women in Northwestern Ontario were aware of, and had access to formal and informal support, as well as the degree to which the support available was seen to be accessible and beneficial. This research is based on both primary and secondary data collection. Primary data sources include; 1) an analysis of selective questions from a regional survey on consumer perceptions of palliative care in Northwestern Ontario; 2) tape-recorded interviews from two focus groups in Thunder Bay deriving from the consumer survey; and 3) one focus group with palliative care volunteers in the city of Thunder Bay. Secondary data sources include social science literature on gender and caregiving and a review of recent policy analyses of health care restructuring in Canada. Similar to other studies, this research confirms gendered expectations of caregiving in chronic and long-term care situations. Assumptions and expectations held by society, family members, and women themselves reinforce the idea of women’s responsibility as primary caregivers and tend to ignore the consequences this may hold for women’s own health and family lives. In addition, this thesis furthers our understanding of the gendered dimension of caregiving by identifying several key factors that play a role in affecting women’s decision-making to accept or decline supportive care. I argue that concerns to preserve the dignity of terminally-ill family members in institutional settings, and the desire to ensure that the patient receives quality care despite staffing shortages and limited services related to recent cutbacks in the health care system are significant influences in women’s decision-making and may cause them to ignore the impact this caregiving has on their own health. Based on the statements made by caregivers in this research, I argue that additional formal support needs to be made available and accessible to informal caregivers. Emotional and practical support would assist both the terminally-ill and their family members. Of equal importance are specific modifications to the implementation of health-care delivery to those in long-term chronic care and short-term palliative care. Presently, it is assumed that female family members are best suited to the role of primary caregivers for ill spouses, parents and relatives. Further research needs to be undertaken to examine the health consequences of this provision of care on women caregivers and to explore the context in which care is being provided. Furthermore, family caregivers have insights about patient needs that health care professionals may find instructive in contributing to the quality of life of terminally-ill patients and family caregivers. Recognition of this may alleviate women’s sense of sole responsibility for the provision of quality care to their family members.