What is "palliative care": a questionnaire survey
Research type
Research Study
Full title
What is “Palliative Care” for Children and Young People? A questionnaire survey of children, young people, healthcare professionals and hospital managers.
IRAS ID
227813
Contact name
Jeremy Dale
Contact email
Sponsor organisation
University of Warwick
Duration of Study in the UK
0 years, 1 months, 1 days
Research summary
Background
The term “palliative care” is inconsistently used in policy and practice. It can described an approach to care, or be applied to services or patients. There are frequent associations with cancer and dying but not other life-limiting conditions. This has consequences for children and young people (CYP) with life-limiting and life-threatening conditions and their families, since many are referred to palliative care services very late in the course of their condition, if at all.Aim
A survey study to investigate current knowledge and attitudes towards the term “palliative care” amongst children and young people (CYP), healthcare professionals (HCPs) and hospital managers (HEMs).Methods
Two electronic questionnaire surveys will be carried out as follows:
1. Survey 1: A survey of CYP, driven and informed by patient and public involvement (PPI). Groups of CYP identified by the PPI panel will be asked to complete an online or paper survey. This will not only capture data but also test out the feasibility of conducting a survey with different groups of young people.
2. Survey 2: A survey of HCPs and HEMs working at five paediatric hospitals in the UK which have variable models of palliative care service (Birmingham, Bristol, Nottingham, Alder Hey and Glasgow). This extends previous work conducted at Great Ormond Street Hospital in 2011.
Quantitative data will be analysed using descriptive statistics. A thematic analysis of qualitative data will be carried out. Survey results for CYP, HCPs and HEMs will be compared, as well as results from each hospital to look for cross-cutting similarities and differences.Expected outcomes
The survey findings will contribute to the growing debate around the language of palliative care.
Dissemination will take place in partnership with the PPI panel to maximise impact through academic papers, conference presentations, reports for policy makers and recommendations for education and training.REC name
East Midlands - Leicester Central Research Ethics Committee
REC reference
17/EM/0287
Date of REC Opinion
14 Sep 2017
REC opinion
Further Information Favourable Opinion