Advanced home care for cancer patients at the end of life: a qualitative study of hopes and expectations of family caregivers

It is increasingly common that cancer patients are cared for at home at the end of life, with help from advanced home care teams. This may have positive implications for cancer patients and their families, but it may also be burdensome to the family caregivers with implications for their health and well-being. This qualitative study was therefore initiated to prospectively explore how family caregivers reason about their expectations of providing end-of-life care at home for relatives with cancer, enrolled in advanced palliative home care units. Ten interviews were conducted with 11 family caregivers at enrolment to the home care unit. A form of constant comparative analysis was used to generate two main themes from the data. One theme concerned the role transition into becoming a family caregiver, whereas the other theme relates to the transition to a new life situation of the caregiver (him/herself). The family caregivers describe themselves as the persons primarily bearing responsibility and providing care for their dying relatives. They were found to have many concerns about their own situation, especially in regard to issues temporally after the death of the patient, but seemed to have few expected sources of support related to these concerns. Professional support is described as expected primarily for care-related tasks, although hopes may be expressed about support in other areas. The distinction between resources described as existing in theory and those used in practice also are apparent in analysis of the interviews. If home care is to be a positive alternative to hospital care, individual expectations should be considered when planning supportive care.