Research priorities for childhood chronic conditions: A workshop report

Pamela Lopez-Vargas, Allison Tong, Sally Crowe, Stephen I. Alexander, Patrina Ha Yuen Caldwell, Dianne E. Campbell, Jennifer Couper, Andrew Davidson, Sukanya De, Dominic A. Fitzgerald, Suzy Haddad, Sophie Hill, Martin Howell, Adam Jaffe, Laura J. James, Angela Ju, Karine E. Manera, Anne McKenzie, Angie M. Morrow, Harrison Lindsay Odgers & 8 others Ross Pinkerton, Angelique F. Ralph, Peter Richmond, Peter J. Shaw, Davinder Singh-Grewal, Anita Van Zwieten, Melissa Wake, Jonathan C. Craig

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Abstract

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.

Original languageEnglish
Pages (from-to)237-245
Number of pages9
JournalArchives of Disease in Childhood
Volume104
Issue number3
DOIs
Publication statusPublished - 1 Mar 2019

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Education
Caregivers
Research
Consumer Organizations
Complementary Therapies
Health
Communication Barriers
Pediatric Hospitals
Aptitude
Quality of Health Care
Home Care Services
Self Care
Motivation
Siblings
Decision Making
Parents
Learning
Organizations
Pediatrics
Technology

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Lopez-Vargas, P., Tong, A., Crowe, S., Alexander, S. I., Caldwell, P. H. Y., Campbell, D. E., ... Craig, J. C. (2019). Research priorities for childhood chronic conditions: A workshop report. Archives of Disease in Childhood, 104(3), 237-245. https://doi.org/10.1136/archdischild-2018-315628
Lopez-Vargas, Pamela ; Tong, Allison ; Crowe, Sally ; Alexander, Stephen I. ; Caldwell, Patrina Ha Yuen ; 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. ; Odgers, Harrison Lindsay ; Pinkerton, Ross ; Ralph, Angelique F. ; Richmond, Peter ; Shaw, Peter J. ; Singh-Grewal, Davinder ; Van Zwieten, Anita ; Wake, Melissa ; Craig, Jonathan C. / Research priorities for childhood chronic conditions : A workshop report. In: Archives of Disease in Childhood. 2019 ; Vol. 104, No. 3. pp. 237-245.
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abstract = "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.",
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author = "Pamela Lopez-Vargas and Allison Tong and Sally Crowe and Alexander, {Stephen I.} and Caldwell, {Patrina Ha Yuen} and Campbell, {Dianne E.} and Jennifer Couper and Andrew Davidson and Sukanya De and Fitzgerald, {Dominic A.} and Suzy Haddad and Sophie Hill and Martin Howell and Adam Jaffe and James, {Laura J.} and Angela Ju and Manera, {Karine E.} and Anne McKenzie and Morrow, {Angie M.} and Odgers, {Harrison Lindsay} and Ross Pinkerton and Ralph, {Angelique F.} and Peter Richmond and Shaw, {Peter J.} and Davinder Singh-Grewal and {Van Zwieten}, Anita and Melissa Wake and Craig, {Jonathan C.}",
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Lopez-Vargas, P, Tong, A, Crowe, S, Alexander, SI, Caldwell, PHY, Campbell, DE, Couper, J, Davidson, A, De, S, Fitzgerald, DA, Haddad, S, Hill, S, Howell, M, Jaffe, A, James, LJ, Ju, A, Manera, KE, McKenzie, A, Morrow, AM, Odgers, HL, Pinkerton, R, Ralph, AF, Richmond, P, Shaw, PJ, Singh-Grewal, D, Van Zwieten, A, Wake, M & Craig, JC 2019, 'Research priorities for childhood chronic conditions: A workshop report' Archives of Disease in Childhood, vol. 104, no. 3, pp. 237-245. https://doi.org/10.1136/archdischild-2018-315628

Research priorities for childhood chronic conditions : A workshop report. / Lopez-Vargas, Pamela; Tong, Allison; Crowe, Sally; Alexander, Stephen I.; Caldwell, Patrina Ha Yuen; 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.; Odgers, Harrison Lindsay; Pinkerton, Ross; Ralph, Angelique F.; Richmond, Peter; Shaw, Peter J.; Singh-Grewal, Davinder; Van Zwieten, Anita; Wake, Melissa; Craig, Jonathan C.

In: Archives of Disease in Childhood, Vol. 104, No. 3, 01.03.2019, p. 237-245.

Research output: Contribution to journalArticle

TY - JOUR

T1 - Research priorities for childhood chronic conditions

T2 - A workshop report

AU - Lopez-Vargas, Pamela

AU - Tong, Allison

AU - Crowe, Sally

AU - Alexander, Stephen I.

AU - Caldwell, Patrina Ha Yuen

AU - Campbell, Dianne E.

AU - Couper, Jennifer

AU - Davidson, Andrew

AU - De, Sukanya

AU - Fitzgerald, Dominic A.

AU - Haddad, Suzy

AU - Hill, Sophie

AU - Howell, Martin

AU - Jaffe, Adam

AU - James, Laura J.

AU - Ju, Angela

AU - Manera, Karine E.

AU - McKenzie, Anne

AU - Morrow, Angie M.

AU - Odgers, Harrison Lindsay

AU - Pinkerton, Ross

AU - Ralph, Angelique F.

AU - Richmond, Peter

AU - Shaw, Peter J.

AU - Singh-Grewal, Davinder

AU - Van Zwieten, Anita

AU - Wake, Melissa

AU - Craig, Jonathan C.

PY - 2019/3/1

Y1 - 2019/3/1

N2 - 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.

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DO - 10.1136/archdischild-2018-315628

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Lopez-Vargas P, Tong A, Crowe S, Alexander SI, Caldwell PHY, Campbell DE et al. Research priorities for childhood chronic conditions: A workshop report. Archives of Disease in Childhood. 2019 Mar 1;104(3):237-245. https://doi.org/10.1136/archdischild-2018-315628