Patient and Public Involvement (PPI) report for proposed study: listen and learn

Cox, Nigel ORCID: https://orcid.org/0000-0002-4159-9449, Tetley, Josie ORCID: https://orcid.org/0000-0002-8762-9594 and Luxmoore, Beth (2016) Patient and Public Involvement (PPI) report for proposed study: listen and learn. In: Patient and Public Involvement (PPI) report for proposed study: listen and learn. Research Report. Manchester Metropolitan University, Manchester, United Kingdom.

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Abstract

Context: Patient and Public Involvement (PPI) work was undertaken to engage relevant stakeholders (residents, family members, volunteers and staff) in order to incorporate their experiences and insights into our NIHR grant proposal, “Listen and learn”. The proposed research study aims to explore the use of resident feedback in care homes to embolden person-centred care. NIHR RDS formally funded PPI activity in the NW throughout the summer of 2016. Using similar methods, researchers from project teams across the UK also informally engaged with residents, care managers, volunteers and family members in their networks to provide perspectives from across the UK. This report focuses on the NW engagement but is reflective of the wider, informal engagements. Aims: The PPI activity was undertaken in order to learn from older people, their formal carers and families/relatives: 1. The relevance to them of the proposed research question 2. How best to attract, recruit and retain people as research participants 3. Identification of ethical issues and concerns 4. How best to support staff and volunteers during research 5. How best to communicate the difference (impact) our project makes People told us: 1.Volunteers are scarce, so need to scope availability. For volunteers, safeguarding and capacity to speak up about concerns deemed important. Settings will require bespoke engagement approaches. 2.Methods should be mixed, e.g. visual/diaries; non-verbal communication/diversity addressed, e.g. people with dementia need a skilled approach; sufficient time to develop rapport. 3.Impacts to focus on people, not only institutions; sufficient time needed to show impact. Dissemination should consider adjustments for people with disabilities to enable involvement. (Full report available via MMU e-repository)