Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis

Abstract

BackgroundLife and healthcare demand work from patients, more so from patients living with multimorbidity. Patients must respond by mobilizing available abilities and resources, their so-called capacity. We sought to summarize accounts of challenges that reduce patient capacity to access or use healthcare or to enact self-care while carrying out their lives.MethodsWe conducted a systematic review and synthesis of the qualitative literature published since 2000 identifying from MEDLINE, EMBASE, Psychinfo, and CINAHL and retrieving selected abstracts for full text assessment for inclusion. After assessing their methodological rigor, we coded their results using a thematic synthesis approach.ResultsThe 110 reports selected, when synthesized, showed that patient capacity is an accomplishment of interaction with (1) the process of rewriting their biographies and making meaningful lives in the face of chronic condition(s); (2) the mobilization of resources; (3) healthcare and self-care tasks, particularly, the cognitive, emotional, and experiential results of accomplishing these tasks despite competing priorities; (4) their social networks; and (5) their environment, particularly when they encountered kindness or empathy about their condition and a feasible treatment plan.ConclusionPatient capacity is a complex and dynamic construct that exceeds “resources” alone. Additional work needs to translate this emerging theory into useful practice for which we propose a clinical mnemonic (BREWS) and the ICAN Discussion Aid.Electronic supplementary materialThe online version of this article (doi:10.1186/s12875-016-0525-9) contains supplementary material, which is available to authorized users.

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“…A recent qualitative review on patient capacity in chronic disease found that capacity results from reshaping biographies to include chronic conditions, mobilizing resources, the experience of accomplishment and supportive social networks . This resonates with our study where collaborative, compassionate, and responsive care communication resulted in shifts in believes about self and health that strengthened patients’ sense of agency and activation and supported their efforts to improve and sustain health.…”

A qualitative study of living with the burden from heart failure treatment: Exploring the patient capacity for self‐care

“…Patients' ability to manage the BoT is important in affecting the outcomes and stability of HF disease (Eton et al, ; Shippee et al, ). However, capacity is an emerging concept and descriptions of capacity based on HF patients' experiences are sparse (Boehmer et al, ). Therefore, HF patients' experiences of capacity when facing treatment and self‐care is important.…”

“…personal, physical, mental, social, financial and environmental), resources and limitations that affect the patients' capability to address demands from health care and life with a chronic illness (Boehmer et al, ; Eton et al, ; Lippiett, Richardson, Myall, Cummings, & May, ; May et al, ; Shippee et al, ). Patient capacity is viewed as a complex and dynamic construct, as it includes both the individual patients' functional performance and depends on the social skills and social capital of patients and members of their social networks (Boehmer et al, ; May et al, ). Boehmer et al () described patient capacity as the achievement of the ability to reshape one's biography of life with chronic condition.…”

“…Patient capacity is viewed as a complex and dynamic construct, as it includes both the individual patients' functional performance and depends on the social skills and social capital of patients and members of their social networks (Boehmer et al, ; May et al, ). Boehmer et al () described patient capacity as the achievement of the ability to reshape one's biography of life with chronic condition. In addition, patients' resources, their social networks, an environment of kindness, empathy, a feasible treatment plan and the ability to carry out actions required for health care and self‐care despite competing priorities affect capacity (Boehmer et al, ).…”

“…Boehmer et al () described patient capacity as the achievement of the ability to reshape one's biography of life with chronic condition. In addition, patients' resources, their social networks, an environment of kindness, empathy, a feasible treatment plan and the ability to carry out actions required for health care and self‐care despite competing priorities affect capacity (Boehmer et al, ). Importantly, capacity is not a static entity but a dynamic accomplishment that is hindered or bolstered by psychological and social mechanisms and that varies depending on experiences of exacerbating events or stability (Boehmer et al, ; Lippiett et al, ).…”