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.
AB - 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.
KW - childhood chronic conditions
KW - priority setting partnerships
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85054338326&partnerID=8YFLogxK
U2 - 10.1136/archdischild-2018-315628
DO - 10.1136/archdischild-2018-315628
M3 - Article
C2 - 30279157
AN - SCOPUS:85054338326
SN - 0003-9888
VL - 104
SP - 237
EP - 245
JO - Archives of Disease in Childhood
JF - Archives of Disease in Childhood
IS - 3
ER -