Relatively few children have two or more distinct “conditions” but substantial numbers have conditions with effects on multiple systems or areas of function, often encompassing both mental and physical health, described as ‘multimorbidity’. These may interact, leading to potentially conflicting treatment recommendations and may frequently require interaction with multiple clinicians and services.
The project set out to understand the perspectives of people with “multimorbidity” on what research questions should be addressed by seeking the views of young people and carers. Early discussions with families led us to define the relevant group on the basis of having complex care needs (CCN) or multiple long-term conditions (MLTC) rather than the widely used definition of multimorbidity as having two or more physical and/or mental health conditions. These involvement activities were part of a wider set of workshops seeking the views of working-age adults, and older people with multiple long-term conditions.
Our aims were to identify and describe, through patient and public involvement activities, the research needs of children and young people with experience of CCN/MLTC, and carers.
We set out to work with children, young people and carers to understand the issues and questions relating to experiences of CCN/MLTC that were important to them. Our two research groups were well-placed to respond quickly to the request and to deliver these involvement activities in a short amount of time, given our experience in patient and public involvement (PPI) in research and focus on, and networks in, child health.
A blended model of involvement activity took place, which included working with two standalone patient and public involvement (PPI) groups, facilitating a bespoke meeting in collaboration with the National Children’s Bureau, and individual discussions and telephone calls.
We worked with:
1. The PenCRU Family Faculty – a network of families of disabled children living primarily in Devon and the south west who work with PenCRU. Eight parent carers attended a meeting to discuss potential research questions. This was supplemented by face-to-face and telephone discussions with carers unable to attend. 2. The Young Persons Mental Health Advisory Group – a national group of young people aged 16 – 25 who have lived experience of mental health conditions, and promote the young person’s perspectives in mental health research.
3. The National Children’s Bureau (NCB) which has been a collaborator of the CPRU for many years. This meeting was attended by 1 Young Research Advisor (who advises on child health policy); 1 member of FLARE, an NCB group for young people with special educational needs and disabilities; 1 member of Young NCB, a more general young person’s membership group; and 4 people from the Making Ourselves Heard network, which is the leading national network focusing on disabled children and young people’s involvement.
4. The PenARC Evidence Synthesis Team produced a Rapid Briefing Paper based on a scoping review entitled “Parent experiences of health care delivery for families with children with disabilities and complex health needs” to help guide discussion. Topics and questions covered Staff from the PenARC and CPRU developed session plans which covered some key questions:
- What mattered to young people with MLTC and to carers of children with CCN?
- What were their positive experiences of interacting with services (including health, social care, and education)?
- What were their negative experiences of interacting with services (including health, social care, and education)?
The final report summarises the involvement work undertaken by PenARC, the Peninsula Childhood Disability research unit (PenCRU) and the Children and Families Policy Research Unit (CPRU) with young people with MLTC and carers of children with CCN. It was discussed with participants during the process and seeks to summarise what they said about how their needs, or the needs of their children, affected their interactions with services, what they wanted from services and the key areas for research which derive from their experiences.
Read the final report for the Department of Health and Social Care: What do young people with multiple long-term conditions and carers of children with complex care needs regard as important areas of research?
A larger group of stakeholders will be consulted in the future to further discuss these research questions, with the ultimate aim to put out a funding call, or series of calls, for research around what matters to people with CCN/MLTC.