Research priorities for childhood chronic conditions: a workshop report. Issue 3 (19th March 2019)

• Record Type: Journal Article
• Authors: 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
• Other Names: author non-byline.; Bowyer Adam author non-byline.; Valerio Carolina author non-byline.; Kambi Caron author non-byline.; Guha Chandana author non-byline.; Walker Chris author non-byline.; Kambi Dane author non-byline.; Elharris Fred author non-byline.; Pagano Georgia author non-byline.; Stumbles Jen author non-byline.; Gile Josephine author non-byline.; Wong Karen author non-byline.; Black Kylie author non-byline.; Bowyer Melissa author non-byline.; Harris Mustapha author non-byline.; Lin Peggy author non-byline.; Jones Penny author non-byline.; Mcgann Peter author non-byline.; Pagano Pietro author non-byline.; Elhassan Rema author non-byline.; Cole Sophie author non-byline.; Haddad Suzy author non-byline.; Anne mckenzie Zoe Fernance author non-byline.; Brown Anthony author non-byline.; Blake Jayne author non-byline.; Keath Jessica author non-byline.; Chandler Juliet author non-byline.; Griffin Laura author non-byline.; Harnett Lizzy author non-byline.; Fernandez Maria Lorenzo author non-byline.; Jackson Megan author non-byline.; Haskard Michelle author non-byline.; Burke Nettie author non-byline.; Gardos Robert author non-byline.; Brophy Siobhan author non-byline.; Jaffe Adam author non-byline.; Bowers Alison author non-byline.; Tong Allison author non-byline.; Ju Angela author non-byline.; Ralph Angelique author non-byline.; Zwieten Anita Van author non-byline.; Penna Antonio author non-byline.; Wyse Benjamin author non-byline.; Scanlan Camilla author non-byline.; Rogers Carolyn author non-byline.; Cowell Chris author non-byline.; Spencer Grace author non-byline.; Hiscock Harriet author non-byline.; Odgers Harrison author non-byline.; Puusepp-benazzouz Helen author non-byline.; Razee Husna author non-byline.; Boyle Jackie author non-byline.; Belcher Jan author non-byline.; Couper Jenny author non-byline.; Craig Jonathan author non-byline.; Ozimek-kulik Justyna author non-byline.; Bau Karen author non-byline.; Manera Karine author non-byline.; James Laura author non-byline.; Mimmo Laurel author non-byline.; Hallowell Leanne author non-byline.; Wallen Margaret author non-byline.; Bowden Michael author non-byline.; Nassar Natasha author non-byline.; Lopez-varga Pamela author non-byline.; Karlsson Petra author non-byline.; Pinkerton Ross author non-byline.; Carlson Samantha author non-byline.; Hall Sharron author non-byline.; De Sukanya author non-byline.; Sheppard-law Suzanne author non-byline.; Wilson Yana author non-byline.;
• Is Part Of: Archives of disease in childhood. Volume 104:Issue 3(2019)
• Page Start: 237
• Publication Date: 2019-03-19
• Subjects: childhood chronic conditions -- priority setting partnerships -- qualitative research; Children -- Diseases -- Periodicals; Infants -- Diseases -- Periodicals; 618.920005
• DOI: 10.1136/archdischild-2018-315628
• Languages: English
• ISSNs: 0003-9888

Abstract

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.