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Consulting with young people: informing guidelines for children’s palliative care
  1. Johanna Taylor1,2,
  2. Sarah Murphy3,
  3. Lizzie Chambers4,
  4. Jan Aldridge5
  1. 1Department of Health Sciences, University of York, York, North Yorkshire, UK
  2. 2Martin House Research Centre, University of York, York, UK
  3. 3School of Psychology, Cardiff University, Cardiff, South Glamorgan, UK
  4. 4Together for Short Lives, Bristol, UK
  5. 5Leeds Teaching Hospitals NHS Trust, Leeds, UK
  1. Correspondence to Dr Johanna Taylor, Health Sciences, University of York, York, North Yorkshire, UK; jo.taylor{at}york.ac.uk

Abstract

Objective 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).

Methods 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.

Results 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 planning was viewed as a tool to support living well and facilitate good care, and the young people were concerned less about where care happens but who provides this.

Conclusion Young people’s priorities differ from those of parents and other involved adults. Incorporating their priorities within policy and practice can help to ensure their needs and preferences are met and relevant research topics identified.

  • palliative care
  • qualitative research
  • adolescent health
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Footnotes

  • Contributors JT, LC and JA contributed to the design of the study. JT, JA and SM carried out data collection and analysis. JT and JA drafted the manuscript with contributions from SM and LC.

  • Funding This work was funded by the National Institute for Health and Care Excellence (NICE).

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data availability statement No data are available. We do not have the necessary permissions to make publicly available the unpublished data from this study.

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