The beneficial effects of self-care include improved well-being and lower morbidity, mortality, and healthcare costs. In this article we address the current state of self-care research and propose an agenda for future research based on the inaugural conference of the International Center for Self-Care Research held in Rome, Italy in June 2019. The vision of this Center is a world where self-care is prioritized by individuals, families, and communities and is the first line of approach in every health care encounter. The mission of the Center is to lead the self-care research endeavor, improving conceptual clarity and promoting interdisciplinary work informed by a shared vision addressing knowledge gaps. A focused research agenda can deepen our theoretical understanding of self-care and the mechanisms underlying self-care, which can contribute to the development of effective interventions that improve outcomes. During conference discussions, we identified seven major reasons why self-care is challenging, which can be grouped into the general categories of behavior change and illness related factors. We identified six specific knowledge gaps that, if addressed, may help to address these challenges: the influence of habit formation on behavior change, resilience in the face of stressful life events that interfere with self-care, the influence of culture on self-care behavioral choices, the difficulty performing self-care with multiple chronic conditions, self-care in persons with severe mental illness, and the influence of others (care partners, family, peer supporters, and healthcare professionals) on self-care. To achieve the vision and mission of the Center, we will lead a collaborative program of research that addresses self-care knowledge gaps and improves outcomes, create a supportive international network for knowledge transfer and support of innovations in self-care research, and support and train others in self-care research. Beyond these specific short-term goals, important policy implications of this work are discussed.

Self-care is a fundamental element of treatment for patients with a chronic condition and a major focus of many interventions. A large body of research exists describing different types of self-care interventions, but these studies have never been compared across conditions. Examination of heterogeneous interventions could provide insights into effective approaches that should be used in diverse patient populations. To provide a comprehensive and standardized cross-condition overview of interventions to enhance self-care in patients with a chronic condition. Specific aims were to: 1) identify what self-care concepts and behaviors are evaluated in self-care interventions; 2) classify and quantify heterogeneity in mode and type of delivery; 3) quantify the behavior change techniques used to enhance self-care behavior; and 4) assess the dose of self-care interventions delivered. Scoping review DATA SOURCES: Four electronic databases - PubMed, EMBASE, PsychINFO and CINAHL - were searched from January 2008 through January 2019. Randomized controlled trials (RCTs) with concealed allocation to the intervention were included if they compared a behavioral or educational self- care intervention to usual care or another self-care intervention and were conducted in adults. Nine common chronic conditions were included: hypertension, coronary artery disease, arthritis, chronic kidney disease, heart failure, stroke, asthma, chronic obstructive lung disease, and type 2 diabetes mellitus. Diagnoses that are psychiatric (e.g. schizophrenia), acute rather than chronic, or benefitting little from self-care (e.g. dementia) were excluded. Studies had to be reported in English with full-text available. 9309 citations were considered and 233 studies were included in the final review. Most studies addressed type 2 diabetes mellitus (n = 85; 36%), hypertension (n = 32; 14%) or heart failure (n = 27; 12%). The majority (97%) focused on healthy behaviors like physical activity (70%), dietary intake (59%), and medication management (52%). Major deficits found in self-care interventions included a lack of attention to the psychological consequences of chronic illness, technology and behavior change techniques were rarely used, few studies focused on helping patients manage signs and symptoms, and the interventions were rarely innovative. Research reporting was generally poor. Major gaps in targeted areas of self-care were identified. Opportunities exist to improve the quality and reporting of future self-care intervention research. Registration: The study was registered in the PROSPERO database (#123,719).

To identify those characteristics of self-management interventions in patients with heart failure (HF) that are effective in influencing health-related quality of life, mortality, and hospitalizations. Randomized trials on self-management interventions conducted between January 1985 and June 2013 were identified and individual patient data were requested for meta-analysis. Generalized mixed effects models and Cox proportional hazard models including frailty terms were used to assess the relation between characteristics of interventions and health-related outcomes. Twenty randomized trials (5624 patients) were included. Longer intervention duration reduced mortality risk (hazard ratio 0.99, 95% confidence interval [CI] 0.97-0.999 per month increase in duration), risk of HF-related hospitalization (hazard ratio 0.98, 95% CI 0.96-0.99), and HF-related hospitalization at 6 months (risk ratio 0.96, 95% CI 0.92-0.995). Although results were not consistent across outcomes, interventions comprising standardized training of interventionists, peer contact, log keeping, or goal-setting skills appeared less effective than interventions without these characteristics. No specific program characteristics were consistently associated with better effects of self-management interventions, but longer duration seemed to improve the effect of self-management interventions on several outcomes. Future research using factorial trial designs and process evaluations is needed to understand the working mechanism of specific program characteristics of self-management interventions in HF patients.

To describe the levels and identify independent predictors of caregiver burden in partners of patients with heart failure. Care and support from a partner are important for the well-being of patients with heart failure and may potentially delay disease progression. However, caregiving may be associated with burden and stress and it is therefore important to understand which factors that influence caregiver burden. Theoretical models of caregiving describe the concept of burden as an outcome variable, including decreased well-being and health. Data for this descriptive cross-sectional study were collected between January 2005 and September 2008. The dependent variable consisted of the Caregiver Burden Scale total score index. Socio-demographic and clinical characteristics, health-related quality of life, symptoms of depression, perceived control, and knowledge on heart failure were included in a regression analysis to determine independent predictors of caregiver burden. The 135 partners had a mean-age of 69 years and 75% were females. Caregiver burden was perceived as medium in 30% of the partners. The patients' Physical Component Score of SF-36 (p<0.001), partners' Mental Component Score of SF-36 (p<0.001) and perceived control (p<0.01) accounted for 39% of the variance in caregiver burden. Caregiver burden was lower when the mental health of the partner and the physical health of the patient were better and the partner experienced higher control over the heart disease. A partner-centered approach to educate and support partners of patients with heart failure is essential to improve the life situation for patient-partner dyads.

The number of studies in the area of self-care is growing and international researchers are increasingly developing self-care interventions to improve outcomes of individual patients and communities. However, growth of the evidence is still slow due to challenges with designing and testing self-care interventions. In this article we address major methodological challenges with regard to the definition of self-care, use of theory, and research design, intended to provide guidance to researchers in this field. During the inaugural conference of the International Center for Self-Care Research held in Rome, Italy in June 2019 we identified important issues in existing self-care research. Discussion and literature review lead to eight recommendation for future self-care research. In preparation, begin with a theoretically sound definition of self-care. In planning the intervention, build on and extend previous studies. Use theory to develop self-care interventions and consider translational models to guide development, evaluation and implementation of complex self-care interventions. Employ a study design that fits the current phase and objectives of the research and measure self-care and related factors carefully. In reporting, describe the sample and setting sufficiently so that others can draw conclusions about generalizability and applicability to their practice and patient population. In interpretation, describe how the intervention is assumed to work (causal assumptions) and its key components. Our review of existing self-care research clearly illustrates that the recommendations we provide are needed if we are to substantially grow the evidence base supporting self-care. Embracing a core set of principles will allow us to build on each other's work. Tweetable A core set of methodological principles is needed to substantially grow the evidence base supporting self-care.