Applying meaningful participatory methods to research on older disabled people’s experiences of work

Introduction: Participatory research is a collaborative approach that involves the people whose lives are affected by the issues being researched as equitable research partners. While such methods are becoming increasingly common in social science research, there is limited research on good practice.  

Goals and methods: This study explored the employment experiences of disabled older people in the UK. The research team conducted 27 interviews with disabled people aged over 50, as well as a nationally representative survey with 1017 people. To ground the research in lived experience, the funder (the Centre for Ageing Better) recruited nine disabled people aged over 50 to form an Experts by Experience Steering Group (EESG). The EESG were involved in selecting the research partner (King’s College London) and then worked with the researchers to design, deliver and analyse the research. Six EESG members were also trained and supported to become peer researchers, completing nine additional interviews.

Results: All nine members of the EESG remained engaged throughout, including ten monthly online sessions and an all-day in-person workshop. Recently one of the EESG members also presented the research to the UK minister for social security and disability. EESG members reported high satisfaction with the process and outputs. The research team found that a very high investment of time and emotional resources was required to establish the strong relationships with EESG members that allowed for truly collaborative working. The role of the funder was crucial in providing structure and consistency to the process which allowed EESG members to plan their time and contributions.

Conclusions: Building truly participatory methods into a research project from the outset can result in outputs that present diverse and authentic experiences. However, collaborative research requires significant time and emotional investment and should be integrated from the very first stages of the project.