The Perspectives of Patients with Chronic Diseases and Their Caregivers on Self-Management Interventions: A Scoping Review of Reviews

Abstract

Background Self-management (SM) interventions are supportive interventions systematically provided by healthcare professionals, peers, or laypersons to increase the skills and confidence of patients in their ability to manage chronic diseases. We had two objectives: (1) to summarise the preferences and experiences of patients and their caregivers (informal caregivers and healthcare professionals) with SM in four chronic diseases and (2) to identify and describe the relevant outcomes for SM interventions from these perspectives. Methods We conducted a mixed-methods scoping review of reviews. We searched three databases until December 2020 for quantitative, qualitative, or mixed-methods reviews exploring patients' and caregivers' preferences or experiences with SM in type 2 diabetes mellitus (T2DM), obesity, chronic obstructive pulmonary disease (COPD), and heart failure (HF). Quantitative data were narratively synthesised, and qualitative data followed a three-step descriptive thematic synthesis. Identified themes were categorised into outcomes or modifiable factors of SM interventions. Results We included 148 reviews covering T2DM (n = 53 [35.8%]), obesity (n = 20 [13.5%]), COPD (n = 32 [21.6%]), HF (n = 38 [25.7%]), and those with more than one disease (n = 5 [3.4%]). We identified 12 main themes. Eight described the process of SM (disease progression, SM behaviours, social support, interaction with healthcare professionals, access to healthcare, costs for patients, culturally defined roles and perceptions, and health knowledge), and four described their experiences with SM interventions (the perceived benefit of the intervention, individualised care, sense of community with peers, and usability of equipment). Most themes and subthemes were categorised as outcomes of SM interventions. Conclusion The process of SM shaped the perspectives of patients and their caregivers on SM interventions. Their perspectives were influenced by the perceived benefit of the intervention, the sense of community with peers, the intervention's usability, and the level of individualised care. Our findings can inform the selection of patient-important outcomes, decisionmaking processes, including the formulation of recommendations, and the design and implementation of SM interventions.

Preferences Regarding Self-Management Intervention Outcomes of Dutch Chronically Ill Patients With Limited Health Literacy

“…However, when asking patients what they think are important outcomes, literature shows that outcomes are often much broader. Although patients also strive for good medical outcomes and a healthy lifestyle, they also strive for a good quality of life for themselves and their network, participation in work, shared decision making, autonomy, and an active role in their own care ( 26 , 37 ). This was shown in a recent European study, COMPAR-EU ( 30 ), in which the outcome preferences of chronically ill patients with diabetes, heart failure, obesity, and COPD were studied.…”

“…A recent scoping review studying patient preferences of self-management, also based on qualitative studies, confirms that patients especially value the relationship with their health care professional. Empathy, emotional support, and compassionate care enhance the adherence to self-management tasks ( 37 ).…”

Development of a Home-Based Nursing Intervention Model for Patients With Heart Failure: A Qualitative Feasibility Study

“…Previous studies on best practices for patient self-management identified multidisciplinary/team effort and one-on-one with a health care provider combined with print material or electronic devices as the most frequently used approaches. 7 , 24 , 25 In the current study, participants built a collaborative system for emergencies and relationships with other medical staffs to enhance response times. Thus, collaboration with other medical staff and using mHealth tools can be considered key aspects of our nursing model.…”

Encouragement of patients’ self-management in primary care for the prevention of cardiovascular diseases (DECADE): protocol for a cluster randomised controlled trial

“…24 Consultations on health behaviour are often experienced as challenging and frustrating by both general practitioners (GPs) 25 26 and patients. 27 Due to physicians' time constraints, regular consultations focusing on CVR are often assessed by GPs as impracticable in routine care. 28 Previous studies indicate that health information and decision aids for chronic diseases are often positively evaluated by patients; however, they rarely have effects on health behaviour change, self-management or clinical outcomes.…”