1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2018 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November 2018 List URL Address <a href="http://doi.org/10.1136/archdischild-2018-315628" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2018-315628</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Research priorities for childhood chronic conditions: a workshop report Publisher An entity responsible for making the resource available Archives of Disease in Childhood Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource childhood chronic conditions;priority setting partnerships;Qualitative Research Creator An entity primarily responsible for making the resource 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 Description An account of the resource 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. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2018-315628" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-315628</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2018 Alexander SI Archives of Disease in Childhood Caldwell PHY Campbell DE childhood chronic conditions Couper J Craig JC Crowe S Davidson A De S Fitzgerald DA Haddad S Hill S Howell M Jaffe A James LJ Ju A Lopez-Vargas P Manera KE McKenzie A Morrow AM November 2018 List Odgers HL Pinkerton R priority setting partnerships Qualitative Research Ralph AF Richmond P Shaw PJ Singh-Grewal D Tong A van Zwieten A Wake M