“Before I came to the hospice, I had nobody”. A qualitative exploration of what patients, family-caregivers, clinicians and volunteers valued most about home, day therapy or inpatient hospice services

Abstract

Background: Globally, the demand for hospice care continues to grow resulting in substantial resource burden. Whilst some countries are able to rely on fixed government contributions, statutory funding for palliative care in the United Kingdom is unequally distributed. These unstable funding streams and increased demand means that hospices need to evidence their value. Objective: This study explored the experiences of patients and family-caregivers to determine what they valued most from accessing hospice services in Wales. Methods: In this large multi-site qualitative study, 94 semi-structured interviews and 2 focus groups were conducted with hospice patients ( n = 45), family-caregivers ( n = 18), hospice staff ( n = 31) and volunteers ( n = 10). The audio recordings were transcribed verbatim and analysed using Framework analysis. Results: Seven themes described patient and family-caregiver experiences and what they valued most: relationships with staff and volunteers, greater support networks which reduced social isolation and loneliness, provision of information and advice which improved patient autonomy, symptom management and subsequent reduction in psychological distress, improvements in patient functionality, mobility and overall physical health and respite relief which promoted improved relationships. Conclusion: This is the largest study to explore what patients and family-caregivers value from hospice care. Findings indicate that hospice care provides a truly needs-led and strengths-based service to those who are nearing and at the end-of-life, which is highly valued by patients and family members.