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

Area of Science:

• Gerontology
• Palliative Care
• Sociology of Health

Background:

• Most individuals prefer to die at home, but this is not always feasible in Canada.
• Informal caregivers are crucial for supporting home-based end-of-life care.
• Experiences of informal caregivers in northern community-based home hospice programs are underexplored.

Purpose of the Study:

• To describe the experiences of bereaved informal caregivers who received support from a community-based home hospice program.
• To identify benefits and challenges faced by informal caregivers within these programs.
• To understand the specific context of northern communities in Western Canada.

Main Methods:

• Qualitative approach using semi-structured interviews.
• 15 bereaved informal caregivers participated, interviewed ~3 months post-bereavement.
• Thematic analysis was employed to analyze interview data.

Main Results:

• Caregivers reported emotional and practical benefits, including fulfilling patient wishes and relief from burden.
• Challenges included issues with referral timing and service delivery aspects.
• Key themes: preference for home death, fulfilling patient wishes, relief, compassionate relationships, and need for early awareness/referral.

Conclusions:

• Home hospice support is valued by informal caregivers for enabling home-based end-of-life care and reducing burden.
• Compassionate and holistic support from hospice staff is important.
• Enhancing early awareness and timely referrals can improve caregiver experiences and service delivery in northern communities.