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Understanding research priorities for young people with long term health conditions

Posted on March 10th 2020

A collaboration between researchers has resulted in a clearer understanding of how to address the research needs of young people with long term health conditions. Long term conditions can affect multiple aspects of health, impacting both physically and mentally. This can lead to potentially conflicting treatment recommendations and frequent interaction with clinicians and services.

Now a report, produced through patient and public involvement activities with young people and their carers, has helped to identify which issues are important when experiencing complex care needs or multiple long term conditions.

PenARC worked together with the Peninsula Childhood Disability research unit (PenCRU) and the NIHR Children and Families Policy Research Unit (CPRU) to investigate through patient and public involvement work with young people and their carers 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 arise from their experiences. 

Researchers worked with groups including the PenCRU Family Faculty , a network of families of disabled children living primarily in Devon and the south west who work with PenCRU, 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 and the National Children’s Bureau (NCB) to help form an understanding of the issues that were important.

In addition 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 the discussion.

Professor Jo Thompson Coon, Director of the PenARC Evidence Synthesis Team said: "It is clear that long term conditions can be complex, impacting on the physical and mental health of young people as well as the people who care for them. This research is an important advance in our efforts to understand how best to support young people with long term conditions and the issues that matter most to them."

You can read the final report, ‘What do young people with multiple long-term conditions and carers of children with complex care needs regard as important areas of research?’ here.




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