title: Recruitment and Reasons for Non-Participation in a Family-Coping-Orientated Palliative Home Care Trial (FamCope).
abstract: 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.
authors: a Research Unit of Clinical Nursing and Palliative Medical Department, Bispebjerg and Frederiksberg University Hospital , Copenhagen , Denmark.
authors: Anne Birgitte Hjuler
authors: AB
authors: Ammari
authors: b Institute of Public Health, University of Copenhagen , Copenhagen , Denmark.|c Department of Integrated Health Care , Bispebjerg and Frederiksberg University Hospital , Copenhagen , Denmark.
authors: Carsten
authors: C
authors: Hendriksen
authors: d Research Unit of Clinical Nursing , Bispebjerg and Frederiksberg University Hospital , Copenhagen , Denmark.|e Department of Nursing Science , University of Aarhus , Aarhus , Denmark.
authors: Susan
authors: S
authors: Rydahl-Hansen
mesh_terms: D000223:Adaptation, Psychological; D000368:Aged; D005190:Family / Q000523:psychology*; D005260:Female; D006699:Home Care Services; D006801:Humans; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000523:psychology / Q000628:therapy*; D010166:Palliative Care / Q000523:psychology*; D018579:Patient Selection; D016312:Treatment Refusal / Q000523:psychology* / Q000706:statistics & numerical data
keywords: advanced cancer; coping; early palliative care; family; home care; reasons for non-participation; recruitment