Mitchell, Sarah J., Slowther, Anne, Coad, Jane and Dale, Jeremy (2018) 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. doi:10.1136/bmjopen-2017-018266 ISSN 2044-6055.

Preview

PDF WRAP-study-protocol-longitudinal-qualitative-interview-healthcare-experiences-Dale-2018.pdf - Published Version - Requires a PDF viewer. Available under License Creative Commons Attribution 4.0. Download (797Kb) | Preview

Request Changes to record.

Abstract

Introduction: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK.

Methods and analysis: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5–18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group.

Ethics and dissemination: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.

Item Type:	Journal Article
Subjects:	R Medicine > RJ Pediatrics > RJ101 Child Health. Child health services
Divisions:	Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School > Health Sciences > Social Science & Systems in Health (SSSH) Faculty of Science, Engineering and Medicine > Medicine > Warwick Medical School
Library of Congress Subject Headings (LCSH):	Child health services -- West Midlands (England) , Sick children -- Interviews
Journal or Publication Title:	BMJ Open
Publisher:	BMJ
ISSN:	2044-6055
Official Date:	1 January 2018
Dates:	Date Event 1 January 2018 Published 21 January 2018 Available 13 October 2017 Accepted
Volume:	8
Number:	1
Article Number:	e018266
DOI:	10.1136/bmjopen-2017-018266
Status:	Peer Reviewed
Publication Status:	Published
Access rights to Published version:	Open Access (Creative Commons)
Date of first compliant deposit:	24 January 2018
Date of first compliant Open Access:	24 January 2018
RIOXX Funder/Project Grant:	Project/Grant ID RIOXX Funder Name Funder ID DRF-2014-07-065 National Institute for Health Research http://dx.doi.org/10.13039/501100000272

Request changes or add full text files to a record

Repository staff actions (login required)

View Item

Downloads