The Missing Billion: Using participatory approaches to improve access to healthcare for disabled people in Uganda

Background Participatory Learning and Action (PLA) is a community-led participatory strategy to improve healthcare access. Community groups are established. They meet regularly to identify issues, develop and implement solutions, and evaluate results. PLA for women significantly reduces maternal and neonatal mortality, but its impact in other areas is not clear.

The study aims to assess whether the PLA for Disability (PLA-D) can reduce mortality and improve health and healthcare access of disabled people in Uganda. Objectives: To use an evidenced-based approach to co-create PLA-D. To assess the feasibility of PLA-D implementation.

To undertake a cluster-based Randomised Controlled Trial (RCT) to assess the effectiveness/cost-effectiveness of PLA-D in reducing mortality. To undertake a process evaluation of PLA-D to understand mechanisms for impact and scale-up. To strengthen capacity for informing disability policy and practice through the conduct of high-quality research.

Method PLA adaptation (months 0-24): We will undertake in-depth interviews and analyse existing quantitative data to describe healthcare access and barriers experienced by disabled people in Uganda. We will update relevant systematic reviews and review the PLA literature. A consortium (researchers, implementers, disabled people) will co-create the PLA-D using the formative research.

Feasibility of PLA-D will be assessed with 5 groups in Uganda.

A two-arm cluster RCT will assess the effectiveness and cost-effectiveness of PLA-D in Luuka district, Uganda (months 24-48).

The control arm will receive health system strengthening support (accessibility audit of healthcare facilities; healthcare worker disability training).

The intervention arm will additionally receive the PLA-D intervention, with one group established per cluster (village or city block). Groups will target disabled people, but will be open to their family/community members.

We will include 64 clusters per arm with approximately 50 disabled people per cluster (Total: 3200 disabled participants per arm).

Data collection will occur: 1) pre-randomisation (baseline), 2) after intervention completion (12 months) and 3) endline (24 months post-baseline).

Disabled participants will complete a structured questionnaire with a trained researcher covering: healthcare quality and access, morbidity, quality of life, and contextual characteristics (e.g. poverty). Vital status will be recorded at follow-ups and verbal autopsy undertaken for reported deaths. Direct and indirect intervention costs will be collected.

A process evaluation will be undertaken to examine the intervention implementation, potential mechanism for action, and consider strategies for scale-up. Ethical procedures will be adhered to throughout. Analysis/dissemination (months 49-60). Intention-to-treat analyses will compare outcomes between control and intervention arms.

Incremental cost-effectiveness ratio will be calculated for outcomes.

We will disseminate findings to key audiences (communities, disabled people, Ugandan and international policy/programme implementers, academics) through tailored approaches (e.g. policy/evidence briefs, community meetings, individual meetings, journal articles, academic presentations).

Anticipated impact PLA-D is anticipated to improve healthcare access and quality for disabled people in the intervention clusters, and thereby reduce morbidity and mortality.

Better health will support participation (e.g. education, employment), and so improve quality of life and reduce poverty. If successful, this programme can be scaled in Uganda and other LMICs, extending this impact. Translational research capacity will be strengthened for Professor Kuper and Ugandan partners.