Healthcare professionals’ perspective on treatment burden and patient capacity in low-income rural populations: challenges and opportunities

The challenges of chronic disease self-management in multimorbidity are well-known. Shippee’s Cumulative Complexity Model provides useful insights on burden and capacity factors affecting healthcare engagement and outcomes. This model reflects patient experience, but healthcare providers are reported to have a limited understanding of these concepts. Understanding burden and capacity is important for clinicians, since they can influence these factors both positively and negatively. This study aimed to explore the perspectives of healthcare providers using burden and capacity frameworks previously used only in patient studies.

Participants were twelve nursing and allied health providers providing chronic disease self-management support in low-income primary care settings. We used written vignettes, constructed from interviews with multimorbid patients at the same health centres, to explore how clinicians understood burden and capacity. Interviews were recorded and transcribed verbatim. Analysis was by the framework method, using Normalisation Process Theory to explore burden and the Theory of Patient Capacity to explore capacity.

The framework analysis categories fitted the data well. All participants clearly understood capacity and were highly conscious of social (e.g. income, family demands), and psychological (e.g. cognitive, mental health) factors, in influencing engagement with healthcare. Not all clinicians recognised the term ‘treatment burden’, but the concept that it represented was familiar, with participants relating it both to specific treatment demands and to healthcare system deficiencies. Financial resources, health literacy and mental health were considered to have the biggest impact on capacity. Interaction between these factors and health system barriers (leading to increased burden) was a common and challenging occurrence that clinicians struggled to deal with.

The ability of health professionals to recognise burden and capacity has been questioned, but participants in this study displayed a level of understanding comparable to the patient literature. Many of the challenges identified were related to health system issues, which participants felt powerless to address. Despite their awareness of burden and capacity, health providers continued to operate within a single-disease model, likely to increase burden. These findings have implications for health system organisation, particularly the need for alternative models of care in multimorbidity.