Research priorities for childhood chronic conditions: a workshop report
Autor: | Sophie Hill, Andrew Davidson, Angelique F. Ralph, Ross Pinkerton, Stephen I. Alexander, Harrison Lindsay Odgers, Anita van Zwieten, Dominic A. Fitzgerald, Jennifer J Couper, Martin Howell, Suzy Haddad, Adam Jaffe, Karine E. Manera, Melissa Wake, Pamela A. Lopez-Vargas, Dianne E. Campbell, Laura J James, Peter Richmond, Jonathan C. Craig, Allison Tong, Angie M. Morrow, Patrina H Y Caldwell, Angela Ju, Peter J. Shaw, Sally Crowe, Sukanya De, Davinder Singh-Grewal, Anne McKenzie |
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Rok vydání: | 2018 |
Předmět: |
Chronic condition
Consensus Adolescent media_common.quotation_subject Disease 030204 cardiovascular system & hematology 03 medical and health sciences 0302 clinical medicine Nursing Multidisciplinary approach Humans Medicine 030212 general & internal medicine Child media_common Health Priorities business.industry Infant Newborn Infant Caregiver burden Consumer Behavior Hospitals Pediatric Child Preschool General partnership Chronic Disease Pediatrics Perinatology and Child Health Psychological resilience New South Wales Patient Participation business Attitude to Health Psychosocial Qualitative research |
Zdroj: | Archives of Disease in Childhood. 104:237-245 |
ISSN: | 1468-2044 0003-9888 |
Popis: | BackgroundChronic 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.ObjectiveTo identify priorities of patients, caregivers and health professionals for research in childhood chronic conditions and describe the reason for their choices.SettingAn Australian paediatric hospital and health consumer organisations.MethodsRecruited 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.ResultsSeventy-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).ConclusionResearch 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. |
Databáze: | OpenAIRE |
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