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Research priorities for childhood chronic conditions : A workshop report

Lopez-Vargas, Pamela
; 
Tong, Allison
; 
Crowe, Sally
; 
Alexander, Stephen I.
; 
Ha Yuen Caldwell, Patrina
; 
Campbell, Dianne E.
; 
Couper, Jennifer
; 
Davidson, Andrew
; 
De, Sukanya
; 
Fitzgerald, Dominic A.
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Author
Lopez-Vargas, Pamela
Tong, Allison
Crowe, Sally
Alexander, Stephen I.
Ha Yuen Caldwell, Patrina
Campbell, Dianne E.
Couper, Jennifer
Davidson, Andrew
De, Sukanya
Fitzgerald, Dominic A.
Haddad, Suzy
Hill, Sophie
Howell, Martin
Jaffe, Adam
James, Laura J.
Ju, Angela
Manera, Karine E.
McKenzie, Anne
Morrow, Angie M.
Lindsay Odgers, Harrison
Pinkerton, Ross
Ralph, Angelique F.
Richmond, Peter
Shaw, Peter J.
Singh-Grewal, Davinder
van Zwieten, Anita
Wakes, Melissa
Craig, Jonathan C.
Abstract
Background Chronic conditions are the leading cause of mortality, morbidity and disability in children. However, children and caregivers are rarely involved in identifying research priorities, which may limit the value of research in supporting patient-centred practice and policy. Objective To identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices. Setting An Australian paediatric hospital and health consumer organisations. Methods Recruited participants (n=73) included patients aged 8 to 14 years with a chronic condition (n=3), parents/caregivers of children aged 0 to 18 years with a chronic condition (n=19), representatives from consumer organisations (n=13) and health professionals including clinicians, researches (n=38) identified and discussed research priorities. Transcripts were thematically analysed. Results Seventy-eight research questions were identified. Five themes underpinned participants’ priorities: maintaining a sense of normality (enabling participation in school, supporting social functioning, promoting understanding and acceptance), empowering self-management and partnership in care (overcoming communication barriers, gaining knowledge and skills, motivation for treatment adherence, making informed decisions, access and understanding of complementary and alternative therapies),strengthening ability to cope (learning to have a positive outlook, preparing for home care management, transitioning to adult services), broadening focus to family (supporting sibling well-being, parental resilience and financial loss, alleviating caregiver burden), and improving quality and scope of health and social care (readdressing variability and inequities, preventing disease complications and treatment side effects, identifying risk factors, improving long-term outcomes, harnessing technology, integrating multidisciplinary services). Conclusion Research priorities identified by children, caregivers and health professionals emphasise a focus on life participation, psychosocial well-being, impact on family and quality of care. These priorities may be used by funding and policy organisations in establishing a paediatric research agenda.
Keywords
Date
2019
Type
Journal article
Journal
Archives of Disease in Childhood
Book
Volume
104
Issue
3
Page Range
237-245
Article Number
ACU Department
School of Behavioural and Health Sciences
Faculty of Health Sciences
Collections
National School of Behavioural and Health Sciences
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URI
https://hdl.handle.net/20.500.14802/29414
Relation URI
DOI
10.1136/archdischild-2018-315628
Source URL
Event URL
Open Access Status
Published as ‘gold’ (paid) open access
License
All rights reserved
File Access
Controlled
Notes
© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ.