2020
DOI: 10.1136/archdischild-2020-320353
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Consulting with young people: informing guidelines for children’s palliative care

Abstract: ObjectiveIncreasingly 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).MethodsThe consultation involved qualitative thematic analysis of data from 14 young people (aged 12–18 years) with a life… Show more

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Cited by 6 publications
(2 citation statements)
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“…8 In the United Kingdom, palliative care is informed by the guidelines so that consultation is done through a sequential analytical process. 9 On the other hand, the MHLW issued two Guidelines for Decision-Making Process in Japan as mentioned before, and the latter was revised in 2018 so that ACP is now especially recommended for the elderly and those in a weak condition.…”
Section: Discussionmentioning
confidence: 99%
“…8 In the United Kingdom, palliative care is informed by the guidelines so that consultation is done through a sequential analytical process. 9 On the other hand, the MHLW issued two Guidelines for Decision-Making Process in Japan as mentioned before, and the latter was revised in 2018 so that ACP is now especially recommended for the elderly and those in a weak condition.…”
Section: Discussionmentioning
confidence: 99%
“…While there have been studies of the experiences of children diagnosed with cancer, focusing on the child's relationships with others, the physical pain suffered, perspectives on death, decision-making, and palliative needs, this remains an area that needs further exploration. [16][17][18] In-depth conversations with children are essential to understanding their psychological, social, and spiritual needs and improving their quality of life. Therefore, there is a clear need for more research into the genuine feelings and thoughts of children with terminal cancer.…”
Section: Introductionmentioning
confidence: 99%