Exploring Family Caregivers’ Rationales for Nonuse of Formal Home Health Services When Caring for a Dying Family Member

Abstract

Drawing on interviews with 26 bereaved individuals who provided care to a dying family member at home, the purpose of this article is to identify and explore motivations behind the “nonuse” of home health services. Participants resided in a Western Canadian regional health authority. In their accounts of not asking for help from formal providers, participants highlighted personal reasons, coping needs, and a lack of knowledge. In their accounts of refused help, they placed more emphasis on a perceived lack of need for help (including constructing themselves as capable and coping), as well as their perceptions of the quality and competence of formal services. Findings are compared against existing literature. Implications for health system policy and planning, and for home health nursing practice, training and education, particularly with reference to situations in which responsibility is left with families to ask for help from formal providers, are also discussed.