Juvenile onset rheumatic diseases: education, vocational readiness, & employment

This project will improve our understanding of the impact of juvenile onset rheumatic and musculoskeletal diseases on adolescents and young adults’ education, vocation, employment, and parents or carers. It is funded in partnership with Versus Arthritis as part of our Oliver Bird Fund.

Why this project is important

Juvenile onset rheumatic and musculoskeletal diseases (jRMD) can cause fatigue, functional disability, frequent clinical visits, and medication-related adverse effects in adolescents and young adults.

These can result in missed school, non-completion of coursework and exams, access issues, and concentration difficulties. It can also impact vocational readiness, which encompasses educational achievements, work placement experience, communication and knowledge skills, and self-esteem.

In turn, parents or carers will have additional caring responsibilities which may involve, for instance, needing to take time off work to attend appointments. 

The research team will conduct a mixed methods project aimed at better understanding the impact of jRMD on AYAs, to inform the development of evidence-based work experience programmes, support pathways, management plans, and future government policies.

The project will also look at possible barriers and facilitators of entering the labour market and the impact on work outcomes for AYAs with jRMD. Young people with jRMD from YourRheum, a national youth advisory panel for AYA, parents/carers, and other important stakeholders will be involved throughout the project. 

Approach

The study will comprise three work packages: 

1. In the first phase, two surveys will be conducted, one with AYAs with jRMD and another with parents or carers. AYAs in education will be asked questions about the impact of jRMD on education and career choices. Those of working age in employment will be asked about job and employer characteristics, perceived barriers to employment, disclosure of jRMD, job satisfaction, support, and disruption to work. AYAs not in employment will be asked about reasons, perceived barriers, benefit receipt, support received or needed, and skills for life and work.  

2. During phase two, interviews will be held with AYAs with jRMD and parents or carers, and those without jRMD for comparison. The interviews will be followed by four focus groups to explore findings and identify issues. A final set of interviews will refine analytical themes and explore new issues.  

3. The final phase will consist of two workshops with relevant stakeholders to discuss the results from the previous phases and identify key messages, target audiences, and best channels for dissemination.  

Outcomes

Results will be disseminated in multiple forms, including toolkits and leaflets, with methods refined during the final phase of research to ensure they reach AYAs, parents or carers, education providers, health professionals, employers, and policymakers.