Commentary by Bill Splinter
Margaret Booth, A., Ridley Maddison, J., Wright, K., Katharine Fraser, L., & Anne Beresford, B. (2018). Research prioritisation exercises related to the care of children and young people with life-limiting conditions, their parents, and all those who care for them : a systematic scoping review.
Other Articles of interest:
Bogossian, A., Gorter, J. W., & Racine, E. (2018). Protocol for a scoping review of ethics in transition programmes for adolescents and young adults with neurodisabilities. BMJ Open, 8(8). https://doi.org/10.1136/bmjopen-2017-020914
Mitchell, S., Slowther, A. M., Coad, J., & Dale, J. (01 21). The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK. BMJ Open, 8(1), e018266. https://doi.org/10.1136/bmjopen-2017-018266
This article ranks research into the needs of children and their families when the child has a life-limiting illness. This article is from The Martin House Research Centre (MHRC) and was started early in 2017. The MHRC is hoping to develop world-leading research on the care of children and young people with life-limiting conditions and the provision of children’s palliative care. The focus of the systematic scoping review is to provide an overview of existing research prioritisation exercises relevant to children, young people with life-limiting conditions and their families and carers. Their objectives in ‘undertaking this review are: to identify, as far as possible, all relevant studies; document key information about the prioritisation exercise, including purpose and methods, used; provide a map of the conditions and age groups ‘covered’ in the literature and stakeholders contributing to the consultations; provide an overview of the research priorities identified’. With such research, it is expected there will be an evidence-based framework for priorities within pediatric palliative care research. This study appears to be an initial attempt at developing such pediatric palliative care priorities.
Clearly, all of us doing research within PPC would wish to have our research focus be one of the priorities listed in this prioritization exercise.