Ammari Anne Birgitte Hjuler, Hendriksen Carsten, Rydahl-Hansen Susan
a Research Unit of Clinical Nursing and Palliative Medical Department, Bispebjerg and Frederiksberg University Hospital , Copenhagen , Denmark.
b Institute of Public Health, University of Copenhagen , Copenhagen , Denmark.
J Psychosoc Oncol. 2015;33(6):655-74. doi: 10.1080/07347332.2015.1082168.
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.
癌症患者及其家庭照护者在姑息治疗过程早期需要支持，以应对身体、心理社会和生存方面的问题。许多干预措施针对患者的症状，医护人员充当问题解决者。然而，家庭应对是姑息治疗中的一个新研究领域。FamCope干预措施旨在测试由护士主导的以家庭应对为导向的姑息家庭护理干预措施是否能帮助家庭在家中应对身体和心理社会问题，家庭成员共同应对，并与医护人员互动。然而，出乎意料的是，大量家庭拒绝参与该试验。我们描述并讨论了招募策略以及患者报告的不参与原因，以增加对阻碍招募因素的了解，并确定影响参与旨在姑息治疗早期家庭应对研究意愿的因素。晚期癌症患者及其最亲近的亲属从内科、外科和肿瘤科招募。记录不参与的原因，并比较参与者和非参与者的特征，以评估基于不参与原因和参与试验原因的非参与者亚组之间的差异。共有65.9%的家庭拒绝参与。出现了拒绝参与的两个主要类别：第一，“疾病负担过重”；第二，接受这种支持“为时过早”。男性比女性更有可能参与。“为时过早”组的患者与试验参与者具有相似的特征。干预的时机以及患者及其亲属的准备情况似乎会影响接受以家庭应对为导向的护理方法的意愿，并阻碍该试验的招募。我们的研究结果可用于进一步的研究和临床实践，以便构建干预措施并针对早期以家庭应对为导向的姑息治疗的相关人群。
