The wider health and wellbeing needs of those accessing paediatric care in England: engaging with the hidden voices of children and young people

Abstract

BackgroundHealth need is inextricably linked with inequalities. Health outcomes are worse for those in lower socio-economic groups, ethnic minority groups, and those with protected characteristics. In the UK, this has been compounded by the COVID-19 pandemic and the cost-of-living crisis. Children and young people accessing hospitals can have unmet health and wellbeing needs, yet the role of hospitals in addressing these is not clear. We engaged with children and young people and caregivers from under-represented groups, often excluded from patient and public involvement, to understand their experiences, in order to support the co-design of future research and interventions. MethodsA series of virtual and physical engagement events were held in Northwest England between March 9, and May 19, 2023. Community groups in areas of high socioeconomic deprivation, carers of children living with disabilities, adolescent care leavers, and school children were contacted through local websites. The concept of health inequalities was introduced at the start of sessions, and participants were encouraged to reflect on their own experiences. Discussions were co-facilitated with community leaders. Events focused on exploring experiences of health inequalities in relation to health care and views on future research. Ethics approval was not required as this was preparatory work; however, written consent was sought. Financial compensation was provided. FindingsA total of 30 participants (aged 10 years and older) participated in four, 90 min events. Themes included: difficulties with transport and navigating services, lack of staff awareness about disabilities, and concerns about transitioning to adult services. Groups expressed varied opinions about research into health inequalities. The topic was considered to be important, and remuneration for participation was felt to be crucial. This is important because of the long-term nature of health inequality outcomes, which result in no immediate benefit to participants themselves. InterpretationUsers of health-care services—including rarely heard groups—welcome research into health inequalities, but they identified important future considerations. Limitations of the work include its small scale and its location in a single geographical area. The outputs of this study will be combined with a scoping review and a review of local population data and will be essential in designing future research and producing recommendations for health-care services. FundingManchester University NHS Foundation Trust Charity.