Strengths and challenges of co-designing research into the lived experience of children/young people’s community health/care services in coastal towns, England

Background: The place where children and young people (CYP) grow up in England can make a difference to their health and care with those living in deprived coastal areas experiencing poorer outcomes than those living inland, deepening population health inequalities. Embedding the perspectives of CYP and parents/carers/guardians (PCG) with lived experience is central to strengthening integrated community services to better meet place-based needs in coastal towns and improve outcomes.

 

Approach: With little evidence on community services in coastal areas and their integration across health, social-care and education, ‘CIRCLE study by the sea’ is working with CYP and PCG to examine community service provision for CYP in coastal towns in England; the extent and experience of integration; and the impact felt. To embed patient and public involvement and engagement (PPIE) from the outset, we established lived experience advisory groups comprising 19 CYP (10-18 years) and PCG to voice their priorities and guide study development through 16 startup meetings.

 

This is part of a wider package of study-wide PPIE. Advisory group meetings used arts-based methods, including mapping, logo design and picture-led discussion as well as rating evolving study-tools for interest, relevance, accessibility. We reflect on the PPIE experience over the startup period, drawing on three impact areas: people; ways PPIE is done; research processes.

 

Outcomes:People: Most PPIE members were new to research involvement. Members reported feeling listened to. CYP designed our logo providing visible PPIE-led branding. Additional meaningful opportunities include research-skills training, conferences, strategy development.

Ways PPIE is done: Support from trusted local charities enabled recruitment. The way PPIE was delivered and valued mattered: arts/activity-based methods, flexibility/breaks, active/empathic listening, meaningful contact and good refreshments were well-received. Vouchers were enabling/motivating as were opportunities to build confidence/skills/voice. Establishing predictable feedback loops was important though could be hampered without contact details/routes for CYP due to data protection. We need to strengthen momentum outside of meetings; co-designed communication strategy may support this.

 

Research process: Startup PPIE supported study-tool development reflecting members’ priorities regarding: reach/inclusion (reflecting different education statuses), language (replacing ableist terminology), accessibility (readability; audio/voice record options to reduce reading/typing load), engagement (visual interest, signposting, motivators). However, PPIE recruitment and coproducing study material takes time and is in tension with the rising number/duration of governance/ethics processes required pre-data collection. Rigid research ethics committee requirements for verbatim data protection wording in participant information leaflets also undermined PPIE recommendations. Options to create bespoke participant information material were unworkable due to impact on timelines.

 

Implications:Startup work has illustrated the value and potential of CYP/PCG engagement in building meaningful partnerships and relevant study tools. However, these positive outcomes – critical to good practice – are constrained by both the rising number/duration of approvals required and increasingly risk-focused research ethics/governance processes which lack the flexibility/nuance to meaningfully centre and value well-considered public voice.

 

To develop experience-informed, place-based evidence on CYP health/social-care service integration, action is required throughout community research and its associated processes to move from PPIE-rhetoric to a grounded reality of enabling and embedding CYP/PCG voice and agency.