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Research priorities for childhood chronic conditions: a workshop report
Pamela Lopez-Vargas1,2, Allison Tong2,3, Sally Crowe4
1Kids Research Institute, The Children's Hospital, Westmead, New South Wales, Australia.
Insights
Children, caregivers, and health professionals identified key research priorities for childhood chronic conditions. Focus areas include life participation, psychosocial well-being, family impact, and care quality to guide future pediatric research agendas.
Area of Science:
- Pediatric Health Research
- Chronic Condition Management
- Patient-Centered Care
Background:
- Chronic conditions significantly impact child mortality, morbidity, and disability.
- Limited involvement of children and caregivers in research priority setting can reduce the relevance of findings for patient-centered practice and policy.
Purpose of the Study:
- To identify research priorities for childhood chronic conditions from the perspectives of patients, caregivers, and health professionals.
- To understand the rationale behind these identified research priorities.
Main Methods:
- A study was conducted in an Australian pediatric hospital involving 73 participants: patients (8-14 years), parents/caregivers, consumer representatives, and health professionals.
- Thematic analysis was used to analyze transcripts of discussions on research priorities.
Main Results:
- Seventy-eight research questions were identified, grouped into five key themes.
- Themes included: maintaining normality, empowering self-management, strengthening coping abilities, broadening focus to family, and improving health and social care quality.
Conclusions:
- Research priorities emphasize life participation, psychosocial well-being, family impact, and quality of care for children with chronic conditions.
- These findings can inform funding and policy organizations in developing a pediatric research agenda.
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.
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