A Middle-Range Theory of Self-Care of Chronic Illness
Riegel B, Jaarsma T, Stromberg A. A Middle-Range Theory of Self-Care of Chronic Illness. Advances in Nursing Science, 2012, 35(3):194-204.
Nearly 50% of adults have one or more chronic illnesses. Self-care is considered essential in the management of chronic illness, but the elements of self-care in this context have not been specified in a middle-range theory. This article describes a middle-range theory of self-care that addresses the process of maintaining health with health promoting practices within the context of the management required of a chronic illness. The key concepts include self-care maintenance, self-care monitoring, and self-care management. Assumptions and propositions of the theory are specified. Factors influencing self-care including experience, skill, motivation, culture, confidence, habits, function, cognition, support from others, and access to care are described.
The Situation Specific Theory of Heart Failure Self-Care: Revised and Updated
Riegel B, Dickson VV, Faulkner KM. The situation specific theory of heart failure self-care: Revised and updated. Journal of Cardiovascular Nursing, 2016: 31(3), 226-235. PMID: 25774844. DOI: 10.1097/JCN.0000000000000244
Since the situation-specific theory of heart failure (HF) self-care was published in 2008, we have learned much about how and why patients with HF take care of themselves. This knowledge was used to revise and update the theory. Objective: The purpose of this article was to describe the revised, updated situation-specific theory of HF self-care. Three major revisions were made to the existing theory: (1) a new theoretical concept reflecting the process of symptom perception was added; (2) each self-care process now involves both autonomous and consultative elements; and (3) a closer link between the self-care processes and the naturalistic decision-making process is described. In the revised theory, HF self-care is defined as a naturalistic decision-making process with person, problem, and environmental factors that influence the everyday decisions made by patients and the self-care actions taken. The first self-care process, maintenance, captures those behaviors typically referred to as treatment adherence. The second self-care process, symptom perception, involves body listening, monitoring signs, as well as recognition, interpretation, and labeling of symptoms. The third self-care process, management, is the response to symptoms when they occur. A total of 5 assumptions and 8 testable propositions are specified in this revised theory. Prior research illustrates that all 3 self-care processes (ie, maintenance, symptom perception, and management) are integral to self-care. Further research is greatly needed to identify how best to help patients become experts in HF self-care.
Factors Related to Self-Care in Heart Failure Patients…
Jaarsma T, Cameron J, Riegel B, Stromberg A. Factors related to self-care in heart failure patients according to the middle-range theory of self-care of chronic illness: a literature update. Current Heart Failure Reports, 2017: 14(2), 71-77. PMID: 28213768. DOI: 10.1007/s11897-017-0324-1.
As described in the theory of self-care in chronic illness, there is a wide range of factors that can influence self-care behavior. The purpose of this paper is to summarize the recent heart failure literature on these related factors in order to provide an overview on which factors might be suitable to be considered to make self-care interventions more successful. Recent studies in heart failure patients confirm that factors described in the theory of self-care of chronic illness are relevant for heart failure patients.
Experiences and skills, motivation, habits, cultural beliefs and values, functional and cognitive abilities, confidence, and support and access to care are all important to consider when developing or improving interventions for patients with heart failure and their families. Additional personal and contextual factors that might influence self-care need to be explored and included in future studies and theory development efforts.
A Situation-Specific Theory of Caregiver Contributions to Heart Failure Self-Care
Vellone E, Riegel B, Alvaro R. A situation-specific theory of caregiver contributions to heart failure self-care. Journal of Cardiovascular Nursing, 34(2), 166-173, 2019. DOI: 10.1097/JCN.0000000000000549
The literature on caregiver contributions to heart failure (HF) patient self-care has grown rapidly during the last few years, but theory guiding this growth is lacking. The purpose of this article is to describe a Situation-Specific Theory of Caregiver Contributions to HF Self-care. We describe theoretical assumptions, the process by which caregivers contribute to HF self-care, factors influencing caregiver contributions to HF self-care, known predictors (caregiver, patient, and dyadic related) and outcomes of caregiver contributions to HF. These outcomes may be caregiver and patient related and positive and/or negative. Caregiver contributions to HF self-care include interacting processes of self-care maintenance, symptom monitoring and perception, and self-care management. Caregiver confidence and cultural values are discussed as important influences on caregiver contributions to HF self-care. Recursive pathways are hypothesized between processes and outcomes. Ten theoretical propositions are proposed. The Situation-Specific Theory of Caregiver Contributions to HF Self-care is still in its infancy, and more research is needed to strengthen the evidence supporting the theory. But at this point, the theory may help to guide future studies addressing caregiver contributions to HF self-care and clinical practice aimed at improving caregiver and patient outcomes.
Integrating Symptoms into the Middle-Range Theory of Self-Care of Chronic Illness
Riegel B, Jaarsma T, Lee CS, Stromberg A. Integrating Symptoms into the Middle-Range Theory of Self-Care of Chronic Illness. Advances in Nursing Science, 2019, 42(3), 206-215.
The Middle-Range Theory of Self-Care of Chronic Illness has been used widely since it was first published in 2012. With the goal of theoretical refinement in mind, we evaluated the theory to identify areas where the theory lacked clarity and could be improved. The concept of self-care monitoring was determined to be underdeveloped. We do not yet know how the process of symptom monitoring influences the symptom appraisal process. Also, the manner in which self-care monitoring and self-care management are associated was thought to need refinement. As both of these issues relate to symptoms, we decided to enrich the Middle-Range Theory with knowledge from theories about symptoms. Here, we propose a revision to the Middle-Range Theory of Self-Care of Chronic Illness where symptoms are clearly integrated with the self-care behaviors of self-care maintenance, monitoring, and management.
Self-Care Research: Where are we now? Where are we going?
Riegel B, Dunbar SB, Fitzsimons D, Freedland K, Lee CS, Middleton S, Stromberg A, Webber D, Vellone E, Jaarsma T. Self-care research: Where are we now? Where are we going? International Journal of Nursing Studies, 2020.
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 7 major reasons why self-care is challenging, which can be grouped into the general categories of behavior change and illness related factors. We identified 6 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 in this article.
Self-Care Research: How to Grow the Evidence Base?
Jaarsma T, Stromberg A, Dunbar SB, Fitzsimons D, Lee CS, Middleton S, Vellone E, Freedland K, Riegel B. Self-care research: How to grow the evidence base? International Journal of Nursing Studies, 2020.
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. 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. These recommendations 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.
Characteristics of Self-Care Interventions for Patients with a Chronic Condition…
Riegel B, Westland H, Iovino P, Barelds I, Bruins Slot J, Stawnychy MA, Osokpo OH, Tarbi E, Trappenburg JCA, Vellone E, Stromberg A, Jaarsma T. Characteristics of Self-Care Interventions for Patients with a Chronic Condition: A Scoping Review. International Journal of Nursing Studies, 2020.
Background: 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.
Objectives: 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.
Design: Scoping review
Data sources: Four electronic databases – PubMed, EMBASE, PsychINFO and CINAHL – were searched from January 2008 through January 2019.
Eligibility criteria for study selection: 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.
Results: 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%). Most studies (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 intervention were rarely innovative. Research reporting was generally poor.
Conclusions: 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 (#123719).