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Effectiveness of the Online Daily Diary (ONDIARY) program on family caregivers of advanced cancer patients: a home-based palliative care trial

伊藤 絵梨子 横浜市立大学

2021.03.25

概要

Introduction
Family caregivers are expected to assume the responsibilities of providing home-based palliative care for their family member, including management of the pain and symptoms caused by cancer. These excessive family caregiving responsibilities can generate poor physical and mental health outcomes and high rates of depression, anxiety, and social isolation; these factors compromise their overall QOL (Stenberg et al., 2010), and negatively affect the physical and psychological status of family caregivers after bereavement (Aoyama et al., 2018). Therefore, healthcare programs and systems need to address these issues to improve outcomes for both patients and families, maintain an adequate level of family caregiving competency, and provide necessary support (Kristin et al., 2020; National Alliance for caregiving, 2018).There are many effective palliative care programs for patients with advanced cancer. However, little is known about effective care programs for the family caregiver of patients with advanced cancer, especially in home-based palliative care settings. This study aimed to determine effectiveness of the Online Daily Diary (ONDIARY) program for quality of life (QOL) of family caregivers of patients with advanced cancer in home-based palliative care setting.

Methods
This study has a quasi-experimental design with a control group. The sample of the study was family caregivers of the patients with advanced cancer in home-based palliative care. The family caregivers of interventional group were assigned to the ONDIARY program in addition to usual care and the family caregivers of control group were assigned to usual care. The ONDIARY program was designed by the authors based on a relevant literature review and interviews with expert experienced in supporting family caregivers who were providing home-based palliative care for patients with cancer. The theoretical framework for the ONDIARY program was emotional competence. The program aimed to improve the QOL of family caregivers, with a focus on enhancing their emotional competence. Emotional competence comprises: perception, appraisal, and expression of emotion; emotional facilitation of thinking; understanding and analyzing emotions; and reflective regulation of emotions to promote emotional and intellectual growth (Petrides and Furnham, 2003). The program comprised online health education and completing a daily online diary to promote these four elements of emotional competence. Outcome measures were feasibility assessment, and primary and secondary outcome assessment. Feasibility assessment was the completion rate. Primary outcome was the Caregiver Quality of Life Index-Cancer (CQOLC) (Ando et al., 2013), and secondary outcome was the six-item Kessler Psychological Distress Scale (K6) (Kesseler et al., 2002; Furukawa et al., 2008). Repeated measures analysis of variance (ANOVA) was performed on each measure, with group and group×time interactions.

Results
A total of 71 family caregivers were contacted. All 71 family caregivers were included in this study and completed baseline assessment. Thirty-five family caregivers were assigned to the intervention group and 36 to the control group. Sixty participants were included in the analyses: 30 each in the intervention and control groups. The mean age ±SD of the family caregivers of control group was 53.8±9.1 years, intervention group was 52.4±13.7 years. Sixteen (53.3%) in control group and Seventeen (56.7%) in intervention group were male. The mean age±SD of the patients of control group was 76.3±13.3 years, intervention group was 72.9±13.8 years. Seventeen (56.7%) in control group and Fifteen (50.0%) in intervention group were male. In total, 30 of the 35 participants assigned to the intervention group completed the ONDIARY program and post-intervention evaluation, giving a completion rate of 85.7%. Repeated measures analysis of variance was performed for each measure, with time, group, and group×time interactions. There was a significant group×time interaction for CQOLC total scores (F=9.324, P=0.003). That is, the QOL of family caregivers in the intervention group was maintained after the intervention, whereas that in the control group declined. There was no significant effect on depression.

Discussion
To our knowledge, this is the first trial to evaluate the effects of improving emotional competence by using an online daily diary method to improve QOL among family caregivers providing home-based palliative care for patients with cancer. In the intervention group in this study, 85.7% of family caregivers kept a daily diary and completed the ONDIARY program. The ONDIARY program therefore offers an intervention that is accessible for family caregivers who are limited in terms of time and place by daily caregiving demands at home, and can therefore be considered applicable in home-based palliative care settings. The present findings indicated that the ONDIARY program in addition to usual care had positive effects on family caregivers’ QOL. Family caregivers who wrote a daily diary maintained their QOL scores after the intervention compared with the control group. The results suggested that the ONDIARY program has the potential effectiveness to prevent decline and maintain in their QOL of the family caregivers of patients with advanced cancer.in home-based palliative care setting.

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