{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,10]],"date-time":"2026-09-10T00:04:53Z","timestamp":1788998693948,"version":"build-2803163510"},"reference-count":47,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,8,5]],"date-time":"2026-08-05T00:00:00Z","timestamp":1785888000000},"content-version":"vor","delay-in-days":4,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,8,1]],"date-time":"2026-08-01T00:00:00Z","timestamp":1785542400000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2026,8]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Supporting parent carers to have greater agency and control over the decisions and actions regarding the care of their child is a central tenet of contemporary health and social care policy. This study explored contextual factors influencing the empowerment of parent carers of disabled children from the perspective of a range of stakeholders.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We used focus groups and semi\u2010structured interviews to collect data from 28 participants: fifteen parent carers, nine children's service providers, three service managers and one commissioner. Interviews and focus groups were recorded and transcribed verbatim. Data were analysed using a process of reflexive thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Findings<\/jats:title>\n                    <jats:p>We propose a novel model that conceptualises the complex system of interrelated contextual factors influencing parent carer empowerment. This model offers a framework to present the three main themes we generated from the data: (i) Lived Experience: Roles, identities and interactions, (ii)Tensions in a Complex System, and (iii) Information, Knowledge and Wisdom.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>The complex system influences both parent carers and service providers, constructing and shaping how these roles and identities are experienced and performed. This is particularly apparent in the interactions between parent carers and service providers, where information is shared, knowledge is created and privileged, and where parent carers can be empowered or disempowered.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient\/Public Contribution<\/jats:title>\n                    <jats:p>Our project team includes a group of parent carer research partners. They have been fully involved in planning and design, data generation, data analysis and co\u2010authorship of the paper. We have recorded involvement using the GRIPP2\u2010short form.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70808","type":"journal-article","created":{"date-parts":[[2026,8,5]],"date-time":"2026-08-05T14:44:43Z","timestamp":1785941083000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Exploring Parent Carer Empowerment in Childhood Onset Disability: A Qualitative Study"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0003-3315-0737","authenticated-orcid":false,"given":"Jim","family":"Reeder","sequence":"first","affiliation":[{"name":"PenCRU (Peninsula Childhood Disability Research Unit), Health &amp; Community Sciences University of Exeter Medical School Exeter Devon UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Saira","family":"Minhas","sequence":"additional","affiliation":[{"name":"PenCRU Family Faculty, Health &amp; Community Sciences University of Exeter Medical School Exeter Devon UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sharon","family":"Foxwell","sequence":"additional","affiliation":[{"name":"PenCRU Family Faculty, Health &amp; Community Sciences University of Exeter Medical School Exeter Devon UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mark","family":"Williams","sequence":"additional","affiliation":[{"name":"PenCRU Family Faculty, Health &amp; Community Sciences University of Exeter Medical School Exeter Devon UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-5658-9334","authenticated-orcid":false,"given":"Jane R.","family":"Smith","sequence":"additional","affiliation":[{"name":"Exeter Collaboration for Academic Primary Care (APEx), University of Exeter Medical School University of Exeter Exeter Devon UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2507-0350","authenticated-orcid":false,"given":"Sally","family":"Kendall","sequence":"additional","affiliation":[{"name":"Centre for Health Services Studies University of Kent Canterbury Kent UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9916-507X","authenticated-orcid":false,"given":"Christopher","family":"Morris","sequence":"additional","affiliation":[{"name":"PenCRU (Peninsula Childhood Disability Research Unit), Health &amp; Community Sciences University of Exeter Medical School Exeter Devon UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,8,5]]},"reference":[{"key":"e_1_2_12_2_1","unstructured":"Department of Health. 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ACSQHC: Sydney2020."},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-015-0907-z"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1136\/medhum-2017-011398"},{"key":"e_1_2_12_10_1","unstructured":"World Health Organization. Health Promotion Glossary WHO: Geneva1998."},{"key":"e_1_2_12_11_1","unstructured":"NHS England. \u201cWorking in Partnership With People and Communities: Statutory Guidance.\u201d HMSO2022."},{"key":"e_1_2_12_12_1","unstructured":"National Quality Board. Improving Experiences of Care: A Shared Commitment for Those Working in Health and Care Systems2022."},{"key":"e_1_2_12_13_1","unstructured":"C.Foot H.Gilburt P.Dunn et al. \"People in Control of Their Own Health and Care.\" King's Fund2014."},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1111\/1468-0009.12197"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1017\/S1474746407004174"},{"key":"e_1_2_12_16_1","volume-title":"Family Resources Survey: Financial Year 2021 to 2022","year":"2023"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1177\/13674935231158456"},{"key":"e_1_2_12_18_1","unstructured":"Royal College of Nursing. Meeting the Health Needs of Children and Young People in Educational and Community Settings London2024."},{"key":"e_1_2_12_19_1","unstructured":"Department of Health. Children and Young People's Health Outcomes Forum: Report of the Long Term Conditions Disability and Palliative Care Sub\u2010Group. HMSO2013."},{"key":"e_1_2_12_20_1","unstructured":"United Kingdom Government. The Children and Families Act.#2014."},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.70039"},{"key":"e_1_2_12_22_1","unstructured":"Care Quality Commission. Health Care for Disabled Children and Young People. A Review of How the Health Care Needs of Disabled Children and Young People Are Met by the Commissioners and Providers of Health Care in England. Care Quality Commission: UK2012."},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12487"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.n2061"},{"key":"e_1_2_12_25_1","volume-title":"Realistic Evaluation","author":"Pawson R.","year":"1997"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1037\/qup0000082"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.4135\/9781036232078.n9"},{"issue":"163","key":"e_1_2_12_28_1","first-page":"105","article-title":"Competing Paradigms in Qualitative Research","volume":"2","author":"Guba E. 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