The impact of treatment burden on people experiencing homelessness

Problem

Treatment burden is the work people have to do to manage their health, and how this work impacts their wellbeing and ability to function. People experiencing homelessness often have disproportionately more health issues yet fewer resources and therefore agency to manage them. There is a paucity of evidence in this area but previous quantitative studies show high levels of mental /physical exhaustion related to self-management in this group, and significant impact on functioning/wellbeing. This research aims to better understand ways in which treatment burden impacts people experiencing homelessness, with a view to informing future healthcare models.

Approach

A qualitative data analysis of a pilot randomised controlled trial conducted in Glasgow and Birmingham. The PHOENIx intervention offered holistic support through weekly outreach visits by an NHS pharmacist prescriber and third sector homelessness worker in a community setting.Semi-structured in-depth interviews were carried out with 7 control and 19 intervention participants, as well as 14 key informant interviews with health professionals and stakeholders. Interviews were recorded, transcribed and analysed thematically using NVIVO 14, drawing on principles from Normalisation Process Theory (NPT).

Findings

Both physical and mental workload were identified to be significant challenges - particularly related to multiple health and social care appointments. The workload of remembering appointments and arranging travel logistics (e.g. reliance on public transport), was substantial. The financial burden of appointment attendance was significant. This effect was greater for those with mental health and substance misuse issues. Insecure housing situations made access to services more difficult.Mental workload was exacerbated by feelings that the health system was unable to meet participants’ needs. Participants reported stigma, lack of trust, and that their own needs or priorities were not understood or accounted for. Those with substance misuse issues felt excluded from mental health services until their substance misuse issues had resolved, despite feeling these were linked.Difficulties were reported in navigating the health system, which was particularly challenging following missed appointments. The mental/physical exhaustion related to treatment burden meant some struggled to engage in primary care or preventative services, and became increasingly reliant on emergency care services. This in turn was felt to have significantly impacted on health outcomes.

Consequences

The co-designed PHOENIx intervention was described as addressing many of these issues, demonstrating the importance of considering the specific needs of people experiencing homelessness when designing and delivering services. In particular, minimising appointment burden through integrated care approaches and utilising models that meet people’s needs. For example, improving accessibility through drop-in approaches, providing transportation support and considering the intersection between mental health and substance misuse. Finally, it highlights the importance of relationships, continuity within services and building trust, and that services should be resourced to provide lasting support.