Reflections on involvement in participatory research

PIF 4th December 2018

Rebeka Fox and Jan Stannard shared their reflections of their involvement in the Creative Journeys Research with ARU as part of the Older People’s Research Group, Essex.

The Older People’s Research Group, Essex (OPRGE) is an independent peer research group made up of people over the age of 50 looking at issues that face others over the age of 50 in Essex. It developed after initial training from ARU and has since been supported by ARU and Essex County Council (ECC). Throughout its lifetime, the OPRGE has been involved in a range of projects, often commissioned, including most recently Creative Journeys.

Creative Journeys is led by ECC Culture and Community Engagement Team and ARU researchers, along with the OPRGE and in partnership with three arts organisations. The research explored the role of participatory arts activities in promoting the social relationships of older people in care homes. Literature had shown the benefits of participatory arts for health and wellbeing, but the aim was to look specifically at relationships. You can find out more by reading the Creative Journeys Final Report or Executive Summary.

The OPRGE was involved throughout all stages of the research:

  • Planning the research at the start of the project.
  • Designing data collection tools e.g. observation template and survey questionnaire.
  • Data collection, including observations and interviews with residents.
  • Data analysis with ARU researchers to identify themes.
  • Participation in steering group meetings throughout the project.
  • Presentation contributions to the interim and showcase events.

On reflection, Rebeka suggested that their involvement in the research was collaborative rather than participatory or participative. Members of the OPRGE are not care home residents themselves so do not have this direct experience; however they may share some experiential knowledge:

  • May share some social and cultural memories e.g. work and work environment – no emails, no computers.
  • May have experience of a stage of life only possible through growing older e.g. having grandchildren.
  • May have experienced losses such as loss of family members or friends, or loss of health.

These factors may assist mutual understanding and encourage freer discussion during interviews with care home residents. However, there are also a whole range of experiences that are specific to older people living in a care home, which the group discussed:

  • Care home residents may experience other losses – loss of space, loss of belongings and familiar surroundings, loss of privacy. Also a loss of independence.
  • The effect of living in an institutional setting, being dependent on care staff and with limited opportunities for engaging with the outside world.
  • The experience of living with other older people whose mental or physical health is deteriorating may result in a different sense of what is possible.
  • Huge difference between the experience of a 50 year old and a 90 year old.

Going into a care home is not something that people often think about, but it is an inevitable reality for many of us. As we get older it does become more relevant, so it may be important for researchers who are closer to this experience to be looking at researching and promoting positive care home experiences.

For future research, it is also interesting to think about what could facilitate greater involvement of care home residents not only as participants, but as collaborators in the research process. This would include identifying the benefit for them, getting buy-in from care staff to help champion the research, and being creative about how they are involved. Though there are significant challenges, the resulting research has the potential for greater insight into the experience of older people in care homes.

Author: annadadswell

As a Research Fellow in Social Work and Social Policy at Anglia Ruskin University, I manage the Participatory Research Blog. Please feel free to contact me with questions and suggestions at

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