How do children experience discourse about their serious illness?
Research type
Research Study
Full title
How do children experience discourse about their serious illness?
IRAS ID
323625
Contact name
Reinie Cordier
Contact email
Sponsor organisation
The University of Northumbria
Duration of Study in the UK
2 years, 0 months, 1 days
Research summary
There appears to be a lack of research into perceived communication barriers in Paediatric Palliative Care (PPC) (Coad et al 2012, 2014) and the exploration of the child’s perspective (Hsiao et al 2007). An investigation into what constitutes ‘high-quality’ communication in this field needs to be explored (Ekberg et al 2015).
Aims
The aims of the research are to: (a) establish an evidence base for discourse strategies in PPC; (b) explore patients’, caregivers’ and clinicians’ experiences of communication about serious illness in a PPC setting; (c) develop evidence-based resources for use with children with life limiting conditions to facilitate adult-child discourse; (d) share insights into strategies for enabling child-centred care in PPC; and (e) encourage the involvement of children and young people in healthcare research and promote the voices of children and young people in the palliative healthcare setting.The following objectives will address the aims:
Objectives
1. Review evidence for current discourse strategies used in PPC.
Systematically review relevant literature and previous research.2. Gather views on, and experiences of, discourse strategies in PPC from relevant stakeholders.
Gain the perspectives of children aged between 7 and 12 years old.
Explore perspectives of key stakeholders including parents, clinicians and PPC service providers and international experts in the field using a mixed-methods approach.3. Develop an evidence-based intervention.
Integrate findings gained from the systematic review and the mixed methods data from children, parents and stakeholders.
Establish and highlight primary findings.
Use research findings to inform the development of a communication intervention for parents and clinicians to be used in discourse about death.
Establish the best method of delivery of the intervention.4. Evaluate the new intervention.
Test the feasibility, preliminary effectiveness and appropriateness of the intervention.
Seek feedback on use of the intervention.Disseminate findings
Share research findings with children and stakeholders.
Highlight the feasibility of involving young people in healthcare research.
Develop guidelines for practice.REC name
North West - Greater Manchester Central Research Ethics Committee
REC reference
23/NW/0147
Date of REC Opinion
22 Aug 2023
REC opinion
Further Information Favourable Opinion