Palliative medicine
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Palliative medicine · Jan 2005
Variations in and factors influencing family members' decisions for palliative home care.
The purpose of this paper is to describe the variations in and factors influencing family members' decisions to provide home-based palliative care. Findings were part of a larger ethnographic study examining the social context of home-based palliative caregiving. Data from participant observations and in-depth interviews with family members (n=13) providing care to a palliative patient at home, interviews with bereaved family members (n=47) and interviews with health care providers (n=25) were subjected to constant comparative analysis. ⋯ Others made indifferent decisions, whereby they reluctantly agreed to provide care at home, and still others negotiated decisions for home care with the dying person. Decisions were influenced by three factors: fulfilling a promise to the patient to be cared for at home, desiring to maintain a 'normal family life' and having previous negative encounters with institutional care. Findings suggest interventions are needed to better prepare caregivers for their role, enhance caregivers' choice in the decision-making process, improve care for the dying in hospital, and consider the development of alternate options for care.
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Palliative medicine · Jan 2005
A national survey of health professionals and volunteers working in voluntary hospices in the UK. II. Staff and volunteers' experiences of working in hospices.
In this paper we report findings of a 1999 nationally representative survey of independent hospices in the UK, focusing on hospice staff and volunteers' experiences of working in hospices. Nineteen of 25 sampled services participated, and these differed little in terms of service provision, size and region from the total sample of 175 services. A response rate of 70% for randomly sampled hospice staff and volunteers was achieved (n=504). ⋯ These results raise questions about the quality of the relationship between hospice trustees, managers and staff, and about the realities of enhancing multiprofessional teamwork in organizations where there are significant differences between staff groups in perception of, and satisfaction with, the working environment. Voluntary hospice trustees and managers face a difficult task in managing and supporting staff whilst also negotiating relationships with the NHS at a time of rapid change, and ensuring hospices' financial viability. Access to high quality leadership programmes may play an important role in ensuring voluntary hospices are characterized by effective, supportive working relationships.