Expanding Burden of Treatment Theory in the context of multimorbidity and poverty: the importance of community and biography

Problem

Despite 20 years of investment, health inequalities remain stubbornly associated with socioeconomic deprivation (SED). Burden of Treatment Theory (BOTT) proposes poorer outcomes when work associated with managing long-term illness (treatment burden) outweighs capacity. MM is associated with SED, and both are associated with increased TB and lower levels of capacity. While treatment burden is well documented, less is known about the differential role of capacity. In this context of work and capacity, interventions to assist self-management are often designed and introduced with little regard to resources required by those living in areas of SED to facilitate participation. Better understanding of capacities and how they may be enhanced to enable optimal self-management of MM, and ultimately mitigate health inequalities, is needed as at present the relative importance of individual and community capacity factors remain unclear.We aimed to explore the key individual and community factors drawn on to enable self-management of multimorbidity in the context of high SED.

Approach

An ethnography was undertaken in a community experiencing high SED in the West of Scotland over 18 months. Data generation methods included: participant observation in community groups (142 hours), in-depth interviews with individuals living with MM (n=25), and three participatory workshops. Thematic analysis applied to all data sets and subsequently mapped to BOTT framework.

Findings

Most themes corresponded to the BOTT framework, but there were important exceptions. Lack of understanding (of health conditions, or the health system) and difficulty navigating systems were important factors that impaired capacity to manage. Critically, participants were not always aware of their knowledge gaps.Wider community-level experiences such as stigma, influenced individual capacity as well as help-seeking and access.Biography, or the ease with which those living with MM reconciled or absorbed illness into everyday lives, was central to expressions of capacity. While BOTT considers biography in terms of mobilising resource, we found that meaning and purpose were crucial. Support to integrate biography or explore meaning and purpose in the context of illness, is not routinely prioritised by practitioners.

Consequences

While BOTT is useful in encouraging us to consider the importance of differential capacity, it should be extended to include community capacity and biography. Acknowledging their importance in intervention and system design has the potential to enhance capacity and in turn mitigate health inequalities. Research that builds on these findings to explore how practitioners might support biographical integration in the context of MM, especially meaning and purpose is needed. Management plans must routinely gauge patient understanding of conditions, and the wider health system, particularly in the context of SED. Work to negate the under-recognised influence of stigma, and the work of navigating the health system, will be crucial if inequalities in health outcomes are to narrow.