A research study based on the principles of co-production

Thomas Pocklington Trust is committed to a world in which people with sight loss can participate fully.  We regard commissioning research to identify priority needs and evidence of the most effective interventions as an important step towards achieving this, together with the involvement of people with sight loss in the research process.

Although there is a growing body of research into the issues of sight loss in older age, there remains little which focuses explicitly on the perspectives of older people with sight loss living in residential care.  So in 2014, Pocklington’s Research and Development Committee, whose members include people with sight loss, agreed to commission a study to examine the lived experiences of older people with sight loss and their everyday needs within care homes.  In addition, the research team would work collaboratively with people with sight loss in the design and delivery of the study, based on the principles of co-production (1).

Approach and methodology

This in-depth qualitative study was carried out in six residential care homes and one nursing home.  It gathered data from residents with sight loss, their family members and care home staff.

The researchers worked with an ‘Experts by Experience Panel’ (EEP) of older people with sight loss who contributed knowledge and expertise based on their own experiences and offered guidance and advice to the researchers.

The researchers also worked with a Project Advisory Group (PAG) which included people with visual impairment, key stakeholders from the sight loss and care sectors and Pocklington staff.  The PAG met regularly and offered specialist guidance on the sight loss sector, ensured that a range of different perspectives were captured in the research process and considered how to maximise the potential impact of the research to improve practice and influence policy.

Understanding experiences of sight loss through co-production

Hearing the voices of older people through this research clearly demonstrated the emotional, psychological and practical dimensions for older people who have sight loss and are living in a care home.

The Experts by Experience Panel contributed personal experiences and knowledge, and worked with the researchers on the design of the research and on the analysis and interpretation of the data.  Panel members provided insightful discussions of the data and raised important questions about what participants had said.  For example, they asked why care home staff did not consider the possibility that people with sight loss could be a resource for other residents with sight loss and how the sharing of experience and knowledge could be facilitated by care home staff.  They reinforced the importance of seeing beyond the current circumstances of an older person and recognising the person’s whole life and experience in helping them settle into a new life within the care home.  They stressed the importance of social interaction and emotional support for older people living with sight loss.

The Project Advisory Group (PAG) drew together a wide range of professional and personal experiences from people working in the sight loss and care sectors.  Meetings provided a forum for discussing the design of the research, recruitment strategies and the findings from the research.  Members provided valuable contextual information which contributed to the interpretation of the data and ways in which the research could impact on changing practice.  Members of the PAG reflected that meetings produced some good networking and cross-sector discussion and, in the current context, partnership working would be vital to improve practice in care homes.

Conclusion

Co-produced research has an important role to play in generating knowledge and understanding about the experiences of visually impaired people.  This study highlighted good practice in how to do this in social research, which could be built upon by the sight loss sector.  For example, it showed how sufficient time and resources are required for co-production to work effectively and in ethically sound ways, if tokenism is to be avoided in the research process.  The outcome was a better understanding, for both the research team and Pocklington, of how to effectively design and deliver research that has been shaped in partnership with people with sight loss.

For more information please contact:

Phil Mils, Senior Press Officer at the University of Brighton, p.j.mills@brighton.ac.uk

Thomas Pocklington Trust, research@pocklington-trust.org.uk

Notes:

1. Co-production has been recognised as being fundamental to all areas of public service.  The Department of Health has worked with people who use services and carers to produce the following definition:

“Co-production is when you as an individual influence the support and services you receive, or when groups of people get together to influence the way that services are designed, commissioned and delivered.”

The National Co-production Advisory Group definition of co-production is broader,

“Co-production is not just a word, it is not just a concept; it is a meeting of minds coming together to find shared solutions.  In practice, co-production involves people who use services being consulted, included and working together from the start to the end of any project that affects them.  When co-production works best, people who use services and carers are valued by organizations as equal partners, can share power and have influence over decisions made.”

2. Thomas Pocklington Trust is a national charity for people with sight loss. Its research programme commissions and funds social and public health research initiatives to identify ways to improve the lives of people with sight loss. www.pocklington-trust.org.uk
3. The Research Findings are here: Older People’s experiences of sight loss in care homes

The research was carried out by Dr Lizzie Ward and Laura Banks from the University of Brighton.