BackgroundEnd-of-life needs can be only partly met by formalized health and palliative care resources. This creates the opportunity for the social support network of family and community to play a crucial role in this stage of life. Compassionate communities can be the missing piece to a complete care model at the end of life.ObjectiveThe main objective of this study is to evaluate the REDCUIDA (Redes de Cuidados or Network of Care) intervention for the development and management of networks of care around people with advanced disease or at the end of life.MethodsThe study is a 2-year nonrandomized controlled trial using 2 parallel groups. For the intervention group, we will combine palliative care treatment with a community promoter intervention, compared with a control group without intervention. Participants will be patients under a community palliative care team’s supervision with and without intervention. The community promotor will deliver the intervention in 7 sessions at 2 levels: the patient and family level will identify unmet needs, and the community level will activate resources to develop social networks to satisfy patient and family needs. A sample size of 320 patients per group per 100,000 inhabitants will offer adequate information and will give the study 80% power to detect a 20% increase in unmet needs, decrease families’ burden, improve families’ satisfaction, and decrease the use of health system resources, the primary end point. Results will be based on patients’ baseline and final analysis (after 7 weeks of the intervention). We will carry out descriptive analyses of variables related to patients’ needs and of people involved in the social network. We will analyze pre- and postintervention data for each group, including measures of central tendency, confidence intervals for the 95% average, contingency tables, and a linear regression. For continuous variables, we will use Student t test to compare independent samples with normal distribution and Mann-Whitney U test for nonnormal distributions. For discrete variables, we will use Mann-Whitney U test. For dichotomous variables we will use Pearson chi-square test. All tests will be carried out with a significance level alpha=.05.ResultsEthical approval for this study was given by the Clinical Research Committee of Andalusian Health Service, Spain (CI 1020-N-17), in June 2018. The community promoter has been identified, received an expert community-based palliative care course, and will start making contacts in the community and the palliative care teams involved in the research project.ConclusionsThe results of this study will provide evidence of the benefit of the REDCUIDA protocol on the development and assessment of networks of compassionate communities at the end of life. It will provide information about clinical and emotional improvements, satisfaction, proxy burden, and health care resource consumption regarding patients in palliative care.Registered Report IdentifierRR1-10.2196/10515

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BACKGROUND People at the end of life have different needs that can only be partly met by formalised health and palliative care resources. This creates the opportunity for the community, the family and the person's social support network to play a crucial role in this stage of life. Compassionate Communities can be the missing piece to a complete care model at the end of life. OBJECTIVE The main objective of this study is to evaluate the REDCUIDA intervetion for the development and management of networks of care around people with advanced disease or at the end of life. METHODS A prospective, descriptive and comparative study on a sample of advanced and terminally ill people under palliative care teams supervision with a proxy who have agreed by informed consent to participate in the study. Design: Descriptive study of REDCUIDA intervention and prospective comparative of 2 cohorts; Intervention: Patients and families who are participate in program and Control: Patients and families who do not participate. 6 interventions (one each week) are carried out by the community promoter or healthcare professionals involved in caring. The aim of the interventions is to create or manage networks of care around people through community involvement. An intervention protocol has been created (REDCUIDA) which includes an evaluation of: patient needs for basic and instrumental activities of daily living, accompanying needs, loneliness, quality of life, use of the health system resources, existence of care networks, caregiver burden, and family satisfaction. A baseline analysis of the patient's condition will be established at the beginning of the interventions and compared with the result obtained after 6 weeks of the intervention. RESULTS The results of this study will provide evidence on the benefit of creating and managing networks of compassionate communities that care for and accompany people at the end of life. It will introduce a diversity of processes developed by different types of caregivers that help to develop tools that guide people in completing the activities they can contribute most to, thus creating networks of care in which citizens and organizations share the same objective: to improve end of life care. CONCLUSIONS The network of care and accompaniment around people from the community facilitates the provision of integrated care centred on the person at the end of life. In addition, knowing how the community behaves in terms of the needs of people at the end of life, will help citizens to appreciate how to care for and accompany those in need, providing tools and guiding through the activities central to creating a network of care where citizens share the same goal: improving care at the end of life.