Supporting older people with cancer and life-limiting conditions dying at home: a qualitative study of patient and family caregiver experiences of Hospice at Home care

Abstract

AIM: To explore patients' and family caregivers' experiences and perceptions of Hospice at Home care. BACKGROUND: The public indicate a preference to be cared for and to die at home. This has inherent challenges, with a key factor being the family caregiver. Supporting end-of-life care at home has resulted in the expansion of Hospice at Home services. A wide configuration of services exists with a lack of robust evidence as to what is valued by recipients, particularly those who are older people. DESIGN: A prospective descriptive qualitative study. METHODS: Recruitment was purposive. Eligible participants were in receipt of Hospice at Home service on at least three occasions and were deemed to have a life expectancy measured in weeks rather than days. Digitally recorded semistructured interviews with 41 participants (16 patients and 25 family caregivers) were undertaken between October 2014 - July 2015. Data were analysed and organized thematically. RESULTS: Several subthemes: 'Talking about'; 'Knowing and Doing'; 'Caring for the Caregivers'; and 'Promoting Choice' contributed to the overall theme of Embracing Holism. A positive impact on emotional, psychological, social and physical well-being was apparent. CONCLUSIONS: This study has provided additional insights as to the value of Hospice at Home care where Hospice Nurses are helping to bring Hospice care into the home. This is helping to support older people who are dying and their caregivers, to live as well as possible and facilitate their wish to be cared for and die in their own home.