Bereaved informal caregivers' experiences with a Canadian home hospice program: a qualitative study

Most individuals wish to die at home, yet in Canada this is not always possible. Informal caregivers play a vital role to support individuals who wish to receive home-based end-of-life care and die at their own homes. Community-based home hospice programs aim to support both individuals at the end of life and their informal caregivers, however, informal caregivers' experiences within such programs, particularly in northern communities, remain underexplored. This study aimed to describe the experiences of bereaved informal caregivers who received support from a community-based home hospice program.

A qualitative approached was used. Semi-structured interviews were conducted with bereaved informal caregivers (N = 15) approximately three months following the death of their care recipient. All participants had been involved as informal caregivers as part of a home hospice program in a geographically isolated, medium sized northern city in Western Canada. Interviews explored their experiences of the program, including perceived benefits and challenges. Data was analyzed using thematic analysis following Braun & Clarke's approach.

Participants described both emotional and practical benefits of home hospice, as well as challenges related to timing of referral and aspects of service delivery. Five themes were identified that captured informal caregivers' experiences with the home hospice program: a preference for home-based end-of-life care, the ability to fulfill the wishes of the person they cared for, relief associated with receiving hospice support, the importance of compassionate relationships with hospice staff, and the perceived need for early awareness and referrals to home hospice services.

Bereaved informal caregivers valued home hospice support for enabling home-based end-of-life care, honoring the wishes of the person they cared for, and reducing caregiver burden through compassionate and holistic support. Improving early awareness and timely referral to home hospice programs may further improve caregiver experiences and strengthen the delivery of home hospice services in Canadian northern communities.