Results from the family and coping oriented palliative homecare intervention study (FamCope)-A randomized controlled trial.

We tested if a family-and-coping-oriented basic palliative homecare intervention (six visits within 15 weeks) could improve quality-of-life and reduce anxiety and depression of advanced cancer patients and their closest relative, and reduce acute hospital admissions of patients. Fifty-seven families were randomized, but patient enrollment was terminated before reaching target sample due to a low recruitment rate. We found no evidence of effect of the FamCope-intervention, but further investigation of effective methods to support how families cope with advanced cancer at home is needed as levels of distress is as high in relatives as it is in patients. However, duration of interventions to support family-coping may need a considerable time-span to show effect on quality-of-life. We recommend that recruitment is undertaken in close collaboration with the hospital clinics, and that complexity of problems is used as inclusion criterion to decide when a family-coping intervention is needed based on the level of problems and distress in the family.

Recruitment and Reasons for Non-Participation in a Family-Coping-Orientated Palliative Home Care Trial (FamCope).

Cancer patients and their family caregivers need support to cope with physical, psychosocial, and existential problems early in the palliative care trajectory. Many interventions target patient symptomatology, with health care professionals acting as problem-solvers. Family coping, however, is a new research area within palliative care. The FamCope intervention was developed to test if a nurse-led family-coping-orientated palliative home care intervention would help families cope with physical and psychosocial problems at home--together as a family and in interaction with health care professionals. However, an unexpectedly high number of families declined participation in the trial. We describe and discuss the recruitment strategy and patient reported reasons for non-participation to add to the knowledge about what impedes recruitment and to identify the factors that influence willingness to participate in research aimed at family coping early in the palliative care trajectory. Patients with advanced cancer and their closest relative were recruited from medical, surgical, and oncological departments. Reasons for non-participation were registered and characteristics of participants and non-participants were compared to evaluate differences between subgroups of non-participants based on reasons not to participate and reasons to participate in the trial. A total of 65.9% of the families declined participation. Two main categories for declining participation emerged: first, that the "burden of illness is too great" and, second, that it was "too soon" to receive this kind of support. Men were more likely to participate than women. Patients in the "too soon" group had similar characteristics to participants in the trial. Timing of interventions and readiness of patients and their relatives seems to affect willingness to receive a family-coping-orientated care approach and impeded recruitment to this trial. Our findings can be used in further research and in clinical practice in order to construct interventions and target relevant populations for early family-coping-orientated palliative care.