{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T02:19:13Z","timestamp":1787797153580,"version":"build-2784847793"},"reference-count":60,"publisher":"Wiley","issue":"4","license":[{"start":{"date-parts":[[2026,7,12]],"date-time":"2026-07-12T00:00:00Z","timestamp":1783814400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,7,12]],"date-time":"2026-07-12T00:00:00Z","timestamp":1783814400000},"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>Introduction<\/jats:title>\n                    <jats:p>\u2018Encompass\u2019 is a participatory group\u2010based intervention originating from low\u2010 and middle\u2010income countries, co\u2010developed with parents and professionals to enhance the well\u2010being, health literacy and empowerment of caregivers of young children with complex neurodisability. We aimed to assess the feasibility and acceptability of (a) intervention delivery in two socially deprived UK urban areas and (b) evaluation methods including data collection on programme outcomes and costs.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>We conducted a mixed\u2010methods pilot and feasibility study with caregivers of children under 5 years with complex neurodisability. Feasibility of intervention delivery was assessed based on recruitment rates, group attendance, fidelity checklists and qualitative interviews with caregivers and facilitators. The suitability of evaluation methods was explored through follow\u2010up rates, questionnaire completeness and caregiver feedback on outcome measures. Data relating to implementation at organisational and system levels were explored through interviews with facilitators and key partners. Results were compared to predefined traffic light criteria (green, amber and red) to determine whether a larger scale evaluation was warranted.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Eight caregivers participated in the programme. Fidelity of delivery and follow\u2010up questionnaire completion met green criteria, while recruitment and attendance met amber criteria, indicating that minor adaptations are required before scaling up. Qualitative findings demonstrated high acceptability of the programme among caregivers and facilitators, particularly valuing the co\u2010facilitation model, participatory approach and peer support. Flexible delivery, including online participation and communication support, enhanced accessibility for families with diverse needs. Capturing programme delivery costs was feasible and provided preliminary estimates to inform future economic evaluation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Our findings provide proof of principle that \u2018Encompass\u2019 can feasibly and acceptably be delivered and evaluated with caregivers of children with complex neurodisability in an ethnically diverse UK community health setting. The findings support progression to a larger scale evaluation, with refinements to recruitment strategies and delivery logistics.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Patient or Public Contribution<\/jats:title>\n                    <jats:p>Caregivers with lived experience were central to developing the \u2018Encompass\u2019 programme and this study. Four local mothers of children with complex neurodisability contributed to planning, recruitment and sense\u2010checking the findings.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Trial Registration<\/jats:title>\n                    <jats:p>ClinicalTrials.gov identifier: NCT06310681.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/hex.70767","type":"journal-article","created":{"date-parts":[[2026,7,12]],"date-time":"2026-07-12T16:30:45Z","timestamp":1783873845000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Feasibility of an Adapted Participatory Group Programme for Caregivers of Children With Complex Neurodisability in the United Kingdom: Results From the Encompass\u20102 Study"],"prefix":"10.1111","volume":"29","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1531-0285","authenticated-orcid":false,"given":"Kirsten","family":"Prest","sequence":"first","affiliation":[{"name":"School of Health and Medical Sciences City St Georges, University of London London UK"},{"name":"Specialist Children's and Young People's Services, Newham East London NHS Foundation Trust London UK"},{"name":"London School of Hygiene and Tropical Medicine London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Kirsten","family":"Barnicot","sequence":"additional","affiliation":[{"name":"School of Health and Medical Sciences City St Georges, University of London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine","family":"Hurt","sequence":"additional","affiliation":[{"name":"School of Health and Medical Sciences City St Georges, University of London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cally J.","family":"Tann","sequence":"additional","affiliation":[{"name":"London School of Hygiene and Tropical Medicine London UK"},{"name":"Disability Research Group MRC\/UVRI &amp; LSHTM Uganda Research Unit Entebbe Uganda"},{"name":"Neonatal Medicine University College London Hospitals NHS Trust London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1458-505X","authenticated-orcid":false,"given":"Michelle","family":"Heys","sequence":"additional","affiliation":[{"name":"Specialist Children's and Young People's Services, Newham East London NHS Foundation Trust London UK"},{"name":"Great Ormond Street Institute for Child Health University College London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Angela","family":"Harden","sequence":"additional","affiliation":[{"name":"School of Health and Medical Sciences City St Georges, University of London London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,7,12]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1007\/s10882-013-9332-6"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2019.10.068"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11845-020-02337-w"},{"issue":"6","key":"e_1_2_12_5_1","first-page":"823","article-title":"Depression and Anxiety Levels in Mothers of Children With Cerebral Palsy: A Controlled Study","volume":"49","author":"Yilmaz H.","year":"2013","journal-title":"European Journal of Physical and Rehabilitation Medicine"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/DBP.0000000000000880"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s40474-021-00240-2"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1111\/jocn.14512"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2009.00989.x"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2022.01.014"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1177\/1367493511420186"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1177\/1049732315570122"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.14536"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1177\/2333393619868979"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2010.03848.x"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2007.tb12610.x"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(13)61835-8"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.acap.2010.12.014"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph20054205"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1080\/01942638.2017.1337664"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1111\/dmcn.12091"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2021.719640"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1002\/14651858.CD002020.pub4"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpsyt.2021.729129"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12889-018-5168-4"},{"key":"e_1_2_12_26_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40814-021-00881-5"},{"key":"e_1_2_12_27_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph22071144"},{"key":"e_1_2_12_28_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.13303"},{"key":"e_1_2_12_29_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40814-025-01619-3"},{"key":"e_1_2_12_30_1","unstructured":"Office for National Statistics \u201cPopulation Estimates for the UK England Wales Scotland and Northern Ireland: Mid\u20102023\u201d [Internet] 2024 https:\/\/www.ons.gov.uk\/peoplepopulationandcommunity\/populationandmigration\/populationestimates."},{"key":"e_1_2_12_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.puhe.2006.12.015"},{"key":"e_1_2_12_32_1","unstructured":"London Borough of Tower Hamlets \u201cTower Hamlets Annual Public Health Report 2022\u201d [Internet] cited January 30 2023 p. 2022 https:\/\/democracy.towerhamlets.gov.uk\/documents\/s214695\/230320%20Annual%20Public%20Health%20Report.pdf."},{"key":"e_1_2_12_33_1","unstructured":"Trust for London \u201cPoverty and Inequality Data\u201d [Internet] cited February 28 2024 https:\/\/trustforlondon.org.uk\/data\/boroughs\/."},{"key":"e_1_2_12_34_1","unstructured":"GeoData Institute \u201cHealth Literacy GeoData UK\u201d [Internet] cited January 30 2024 http:\/\/healthliteracy.geodata.uk\/."},{"key":"e_1_2_12_35_1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-155-2-201107190-00005"},{"key":"e_1_2_12_36_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2019-032705"},{"key":"e_1_2_12_37_1","volume-title":"The Adult Learners: A Neglected Species","author":"Knowles M.","year":"1990"},{"key":"e_1_2_12_38_1","unstructured":"Center for Universal Education at Brookings \u201cChildhood Cost Data Initiative\u201d [Internet] cited January 31 2024 https:\/\/www.childhoodcostdata.org\/."},{"key":"e_1_2_12_39_1","doi-asserted-by":"publisher","DOI":"10.1037\/h0079106"},{"key":"e_1_2_12_40_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jebo.2003.09.014"},{"key":"e_1_2_12_41_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0197426"},{"key":"e_1_2_12_42_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12888-023-04550-0"},{"key":"e_1_2_12_43_1","unstructured":"Warwick Medical School \u201cThe Warwick\u2010Edinburgh Mental Wellbeing Scales\u2014WEMWBS\u201d [Internet] cited January 31 2021 https:\/\/warwick.ac.uk\/fac\/sci\/med\/research\/platform\/wemwbs\/."},{"key":"e_1_2_12_44_1","unstructured":"EuroQol Group \u201cEQ\u20105D\u201d [Internet] cited January 31 2009 https:\/\/euroqol.org\/information-and-support\/euroqol-instruments\/eq-5d-5l\/."},{"key":"e_1_2_12_45_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-013537"},{"key":"e_1_2_12_46_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2022-063885"},{"key":"e_1_2_12_47_1","doi-asserted-by":"publisher","DOI":"10.1186\/s40814-018-0361-x"},{"key":"e_1_2_12_48_1","doi-asserted-by":"publisher","DOI":"10.1177\/1744987119880234"},{"key":"e_1_2_12_49_1","doi-asserted-by":"publisher","DOI":"10.1186\/1748-5908-4-50"},{"key":"e_1_2_12_50_1","unstructured":"S.KhanandJ. E.Moore \u201cMaking Context Assessment Manageable: How to Slice and Dice Context in Different Ways \u201d Implementation in Action Bulletin [Internet] [cited January 31 2024 https:\/\/thecenterforimplementation.com\/toolbox\/making-context-assessment-manageable."},{"key":"e_1_2_12_51_1","volume-title":"NVivo","author":"Lumivero","year":"2023"},{"key":"e_1_2_12_52_1","unstructured":"NHS Healthcareers \u201cAgenda for Change\u2014Pay Rates | Health Careers\u201d [Internet] cited September 15 2025 https:\/\/www.healthcareers.nhs.uk\/working-health\/working-nhs\/nhs-pay-and-benefits\/agenda-change-pay-rates?utm_source=chatgpt.com."},{"key":"e_1_2_12_53_1","unstructured":"National Institute for Health and Care Research \u201cPayment Guidance for Researchers and Professionals | NIHR\u201d [Internet] cited September 15 2025 https:\/\/www.nihr.ac.uk\/payment-guidance-researchers-and-professionals."},{"key":"e_1_2_12_54_1","doi-asserted-by":"publisher","DOI":"10.3310\/hta25570"},{"key":"e_1_2_12_55_1","doi-asserted-by":"publisher","DOI":"10.3389\/fpubh.2024.1445879"},{"key":"e_1_2_12_56_1","doi-asserted-by":"publisher","DOI":"10.3389\/fped.2022.981976"},{"key":"e_1_2_12_57_1","doi-asserted-by":"publisher","DOI":"10.12688\/wellcomeopenres.16839.3"},{"key":"e_1_2_12_58_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph17103559"},{"key":"e_1_2_12_59_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0202096"},{"key":"e_1_2_12_60_1","doi-asserted-by":"publisher","DOI":"10.1080\/09638288.2023.2178528"},{"key":"e_1_2_12_61_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pec.2016.07.003"}],"container-title":["Health Expectations"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70767","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/full-xml\/10.1111\/hex.70767","content-type":"application\/xml","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/hex.70767","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T02:12:36Z","timestamp":1787796756000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/hex.70767"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,7,12]]},"references-count":60,"journal-issue":{"issue":"4","published-print":{"date-parts":[[2026,8]]}},"alternative-id":["10.1111\/hex.70767"],"URL":"https:\/\/doi.org\/10.1111\/hex.70767","archive":["Portico"],"relation":{},"ISSN":["1369-6513","1369-7625"],"issn-type":[{"value":"1369-6513","type":"print"},{"value":"1369-7625","type":"electronic"}],"subject":[],"published":{"date-parts":[[2026,7,12]]},"assertion":[{"value":"2026-01-20","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-06-30","order":2,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2026-07-12","order":3,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}],"article-number":"e70767"}}