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Additional file 1. Interview guide

Additional file 1. Topic List.

Additional file 1. COREQ checklist.

Additional file 2. Code tree

Supplemental digital content is available in the text., Background The Caregiver Reaction Assessment (CRA) is considered one of the well-developed instruments for measuring the multidimensional burden of family caregivers. To date, there is no available validated instrument to assist healthcare professionals in measuring the caregiver’s burden in Indonesia. Objective To translate the CRA from English into Indonesian and to conduct psychometric testing of this CRA–Indonesian version (CRA-ID) with family caregivers of patients with cancer. Methods Cross-cultural translation and psychometric testing were conducted. Confirmatory factor analysis and exploratory factor analysis were performed to check, explore, and confirm the best model for the CRA-ID; internal consistency was also measured. Results A total of 451 respondents participated, of whom 40 were involved in the feasibility testing. Confirmatory factor analysis with the original factors of the CRA revealed that the fit was not satisfactory, and adaptation was needed. Through exploratory factor analysis, the best model fit was developed, and confirmatory factor analysis was performed again. Five factors from the original instrument were confirmed with an explained variance of 54.89%. Almost all items in the CRA-ID appeared to have a similar structure as the original version. Cronbach's α's ranged between .64 and .81. Conclusions The CRA-ID appeared to be feasible, valid, and reliable for measuring the burden of family caregivers of patients with cancer in Indonesia. Implications for Practice Nurses can use the CRA-ID to measure family caregivers’ burden. Its availability in the Indonesian language enhances the opportunity to conduct international comparisons of family caregiver burden using the same instrument.

Additional file 1. Topic list family caregivers. Microsoft Word document (DOC). In this additional file the topic list for the interviews with the family caregivers is reported.

Additional file 2. Codebook interviews family caregivers. Microsoft Word document (DOC). In this additional file the final coding scheme for the interviews with the family caregivers is reported.

Additional file 1: Supplementary Table 1. Known preferences stratified by type of referrer, and patient and demographic characteristics, N (yes/total) (%)

Additional file 1.

BACKGROUND: Research has highlighted the need for improving the implementation of advance care planning (ACP) in nursing homes. We developed a theory-based multicomponent ACP intervention (the ACP+ programme) aimed at supporting nursing home staff with the implementation of ACP into routine nursing home care. We describe here the protocol of a cluster randomised controlled trial (RCT) that aims to evaluate the effects of ACP+ on nursing home staff and volunteer level outcomes and its underlying processes of change. METHODS: We will conduct a cluster RCT in Flanders, Belgium. Fourteen eligible nursing homes will be pair-matched and one from each pair will be randomised to either continue care and education as usual or to receive the ACP+ programme (a multicomponent programme which is delivered stepwise over an eight-month period with the help of an external trainer). Primary outcomes are: nursing home care staff's knowledge of, and self-efficacy regarding ACP. Secondary outcomes are: 1) nursing home care staff's attitudes towards ACP and ACP practices; 2) support staff's and volunteer's ACP practices and 3) support staff's and volunteers' self-efficacy. Measurements will be performed at baseline and eight months post-measurement, using structured self-reported questionnaires. A process evaluation will accompany the outcome evaluation in the intervention group, with measurements throughout and post-intervention to assess implementation, mechanisms of impact and context and will be carried out using a mixed-methods design. DISCUSSION: There is little high-quality evidence regarding the effectiveness and underlying processes of change of ACP in nursing homes. This combined outcome and process evaluation of the ACP+ programme aims to contribute to building the necessary evidence to improve ACP and its uptake for nursing home residents and their family. TRIAL REGISTRATION: The study is registered at ClinicalTrials.gov (no. NCT03521206). Registration date: May 10, 2018. Inclusion of nursing homes started March, 2018.Hence, the trial was retrospectively registered but before end of data collection and analyses.

Additional file 2: Supplementary file 2. Topic list interviews with people with dementia and family care givers.

Additional file 3: Supplementary file 3. Characteristics of GPs who did or did not have ACP and the items of the GP survey.

Additional file 3 Table S2. Cost differences per care cluster.

Additional file 1 Fig. S1: Flowchart PACE cluster RCT.

Background The number of residents in long-term care facilities (LTCFs) in need of palliative care is growing in the Western world. Therefore, it is foreseen that significantly higher percentages of budgets will be spent on palliative care. However, cost-effectiveness analyses of palliative care interventions in these settings are lacking. Therefore, the objective of this paper was to assess the cost-effectiveness of the ‘PACE Steps to Success’ intervention. PACE (Palliative Care for Older People) is a 1-year palliative care programme aiming at integrating general palliative care into day-to-day routines in LTCFs, throughout seven EU countries. Methods A cluster RCT was conducted. LTCFs were randomly assigned to intervention or usual care. LTCFs reported deaths of residents, about whom questionnaires were filled in retrospectively about resource use and quality of the last month of life. A health care perspective was adopted. Direct medical costs, QALYs based on the EQ-5D-5L and costs per quality increase measured with the QOD-LTC were outcome measures. Results Although outcomes on the EQ-5D-5L remained the same, a significant increase on the QOD-LTC (3.19 points, p value 0.00) and significant cost-savings were achieved in the intervention group (€983.28, p value 0.020). The cost reduction mainly resulted from decreased hospitalization-related costs (€919.51, p value 0.018). Conclusions Costs decreased and QoL was retained due to the PACE Steps to Success intervention. Significant cost savings and improvement in quality of end of life (care) as measured with the QOD-LTC were achieved. A clinically relevant difference of almost 3 nights shorter hospitalizations in favour of the intervention group was found. This indicates that timely palliative care in the LTCF setting can prevent lengthy hospitalizations while retaining QoL. In line with earlier findings, we conclude that integrating general palliative care into daily routine in LTCFs can be cost-effective. Trial registration ISRCTN14741671.

Additional file 1: Supplementary file 1. Topic list focus group interview with workshop trainers.