Caregiver activation of relatives of patients with advanced cancer.

OBJECTIVE: Relatives of patients with advanced cancer often have many caring responsibilities. Not everyone may have sufficient knowledge, skills, and confidence-also known as caregiver activation-to provide such care. We assessed caregiver activation in relatives and its association with their personal characteristics and their own well-being. METHODS: A cross-sectional study among relatives of patients with advanced cancer. Measures included caregiver activation (C-PAM), resilience, personal self-care, caregiver burden, depressive symptoms, quality of life, and social well-being. The C-PAM distinguishes four levels of activation, ranging from poor (level 1) to adequate (level 4). Bivariate and multivariable regression analyses were performed. RESULTS: Two hundred fifty-four relatives were included; 32% had level 1 activation, 30% level 2, 27% level 3 and 11% level 4. Higher levels of caregiver activation were found among partners, those who provided more hours of informal care, were more resilient, and scored higher on personal self-care. Higher caregiver activation was associated with lower caregiver burden, less depressive symptoms, and better social well-being. CONCLUSION: In our study, the majority of relatives seem insufficiently prepared to provide care for their loved one. Supporting them in gaining knowledge, skills, and confidence to provide such care may improve their own well-being.

Effect of palliative care nurse champions on the quality of dying in the hospital according to bereaved relatives: A controlled before-and-after study.

BACKGROUND: To improve the quality of end-of-life care, hospitals increasingly appoint palliative care nurse champions. AIM: We investigated the effect of nurse champions on the quality of life during the last 3 days of life and the quality of dying as experienced by bereaved relatives. DESIGN: A controlled before-and-after study (June 2009-July 2012). Halfway, in each of seven intervention wards, two nurse champions were appointed; 11 wards served as control wards. The quality of life during the last 3 days of life, quality of dying and multiple dimensions of quality of dying were compared before and after the introduction of nurse champions. SETTING: In a university hospital, each death at non-intensive care units was followed up by an invitation to relatives (10-13 weeks later) to answer a questionnaire. RESULTS: For the two periods, data were collected on 86 and 84 patients in intervention wards and on 108 and 118 patients in control wards (overall response: 52%). In the intervention wards, no differences were found in the quality of life during the last 3 days of life and the quality of dying scores: in both periods, median score for the quality of life during the last 3 days of life was 3.0 and for the quality of dying 7.0. No differences were found in multiple quality of dying dimensions. In control wards, the median quality of dying score was 7.0 pre-intervention and 6.0 post-intervention (p = 0.04). Other scores were comparable with those in intervention wards. CONCLUSION: Performing a complex intervention study in palliative care proved to be feasible. This study showed no differences in the experiences of bereaved relatives after introduction of nurse champions. The complexity of palliative care in the hospital might require more intensive and longer training of nurse champions.