Learning from bereaved parents to improve children's palliative care
Research type
Research Study
Full title
Learning from Bereaved Parents: Improving Palliative and End-of-Life Care for Children with Life-limiting and Life-threatening Conditions: A Mixed Methods Study
IRAS ID
240046
Contact name
Archana Soman
Contact email
Sponsor organisation
Cardiff University
Duration of Study in the UK
0 years, 3 months, 23 days
Research summary
The prevalence of life-limiting conditions (LLC) in children and young people (0-19) in the UK is estimated to be 32 per 10000, meaning that there are about 49000 children living with LLC in England. Together for Short Lives, National Institute of Health and Clinical Excellence have produced guidance and standards for palliative care for children with LLC. However, provision of children's palliative care is variable across the country and whereas there are well established palliative care services for children with incurable cancers in most places, the same cannot be said about children with non-cancer LLC.
Evidence suggests that Advance Care Planning in adults improve perception of quality of life, reduce unnecessary interventions and improve comfort. Research into advance care planning(pACP) in children is limited. A systemic review by Lotz et al., 2013 showed a dearth of pACP programmes globally, but especially in Europe. There is some evidence of pACP triggering positive emotional experiences in adolescent patients and their surrogates.
This study aims to identify the factors that may influence the care that children and families receive – such as a diagnosis of cancer vs non-cancer life-limiting condition, the age of the child, and the family’s socio-economic status. It also aims to achieve insights into the subjective experiences of families who lose children to life-limiting conditions.
This study will comprise 2 parts: an initial questionnaire study that will aim to recruit the parents of about eighty children who died of an LLC and is expected to give us useful quantitative data about the factors that influence palliative care. The second part of the study will consist of in-depth one-to-one interviews with 8-10 parents/ couples and will aim to obtain qualitative information about the experiences of the families around palliative and end-of-life care for children, with a particular focus on advance care planning.REC name
North West - Greater Manchester West Research Ethics Committee
REC reference
18/NW/0840
Date of REC Opinion
10 Jan 2019
REC opinion
Further Information Favourable Opinion