Background Paediatric palliative care plays an important role in the lives of children and young people with life-limiting conditions and their families. However, the views of young people are rarely sought when improving these services.
Aims This consultation explored the views and experiences of young people, with an aim to inform clinical guidelines.
Methods Qualitative thematic analysis of data collected from 14 young people (aged 12–18) with a life-limiting condition, who took part in focus groups or interviews. Topics explored were information and communication; care planning; place of care; emotional care; and improving services.
Findings Participants were keen to be involved in care planning, although preferences for involvement and information varied and changed over time. Participants emphasised that quality of care was more important than place of care. Aspects that helped them to feel safe and looked after included: access to specialists with knowledge of their condition; being treated as an individual; carers taking time to meet their personalised needs; and continuity of relationships. Participants described a range of negative feelings related to having a serious health condition. Distraction, avoidance, and talking to others were identified as common strategies to manage these. However, some participants expressed unmet needs for emotional care and felt unable to discuss this with others.
Conclusions Providing young people with personalised information and involving them in planning care to the extent they desire can reduce uncertainty about what will happen and when, and minimise disruption to everyday life. This needs to be balanced against their developmental and emotional needs, and the importance to young people of living well rather than focusing on their deteriorating health and end of life.
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