Consulting with Young People About Healthcare. Part 2: Experience of Long-Term Health Conditions

Abstract

The aim of this study is to provide a qualitative perspective of young peoples' experiences of long term illness. Three young people were interviewed and participated in making film diaries about their experiences of living with a long term illness. The interview transcripts were then analysed using thematic analysis. Four main themes were identified to represent common shared experiences across participants. These related to coping, the impact of illness on various aspects of life, experiences of healthcare, and transitions from pediatric to adult services. While significant efforts are being made to increase knowledge and understanding of the experiences of long term illness within the child and adolescent population there is still much to be learned, as is evident from this direct account of young peoples' experiences. We identify implications for clinical practice and suggestions for future research in light of listening to the young peoples' stories.

Effective healthcare communication with children and young people: a systematic review of barriers and facilitators

“…Eight of the included studies collected data through semistructured interviews,31–38 three used participatory-based approaches39–41 and one was a mixed-methods study 42. One systematic review which included qualitative, quantitative and mixed-methods studies was included 43…”

“…Nine papers reported on communicating with young people32–35 37 40–43 and seven with children 32 33 37 39–42. Three studies used parental views as proxies.…”

“…Including future possibilities and next steps in communication helps CYP and their families understand their condition, treatment and long-term outcomes 31 35 37. Children with chronic conditions wanted to have positive, ongoing conversations as treatment plans and prognoses evolved.…”

“…Children noticed and appreciated when healthcare staff devoted effort and time to get to know them as individual people,32 34–36 38 40 41 43 so that communication is meaningful and treatment appropriate 33 35–37 41 43. This is a particular concern for parents of children with communication difficulties.…”