Consulting with young people: informing guidelines for children's palliative care.

Archives of Disease in Childhood
Johanna TaylorJan Aldridge

Abstract

Increasingly the views of young people are sought when improving healthcare; however, it is unclear how they shape policy or practice. This paper presents a consultation with young people commissioned by the National Institute for Health and Care Excellence (NICE) to inform clinical guidelines for paediatric palliative care (end-of-life care for infants, children and young people). The consultation involved qualitative thematic analysis of data from 14 young people (aged 12-18 years) with a life-limiting or life-threatening condition who took part in focus groups or interviews. The topics explored were predefined by NICE: information and communication; care planning; place of care; and psychological care. Data collection consisted of discussion points and activities using visual cues and was informed by a pilot consultation group with five young adults (aged 19-24 years). Findings were shared with participants, and feedback helped to interpret the findings. Four overarching themes were identified, cutting across the predetermined topic areas: being treated as individuals with individual needs and preferences; quality of care more important than place; emotional well-being; and living as a young person. Importantly, care plannin...Continue Reading

References

Mar 15, 2011·BMC Medical Research Methodology·Benedicte Carlsen, Claire Glenton
Dec 18, 2013·Archives of Disease in Childhood·Sarah MitchellJeremy Dale
Jan 19, 2016·Collegian : Journal of the Royal College of Nursing, Australia·Claudia VirdunPatricia M Davidson
Jul 21, 2016·BMJ : British Medical Journal·Anne Gulland
Apr 6, 2017·Archives of Disease in Childhood·Sarah MitchellJeremy Dale
Jul 15, 2017·Archives of Disease in Childhood·Lorna K Fraser, Roger Parslow
Nov 12, 2017·Archives of Disease in Childhood·Erik A H LoeffenUNKNOWN Pediatric Palliative Care—Individualized Care Plan Working Group
Dec 12, 2018·Journal of Palliative Medicine·Kimberley WidgerJürg C Streuli
Aug 14, 2019·Journal of Pain and Symptom Management·Katherine L MarcusVeronica Dussel

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