{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,22]],"date-time":"2026-10-22T06:11:12Z","timestamp":1792649472354,"version":"4.5.0"},"reference-count":57,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2018,9,27]],"date-time":"2018-09-27T00:00:00Z","timestamp":1538006400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Child"],"published-print":{"date-parts":[[2019,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background<\/jats:title><jats:p>Four fifths of the estimated 150 million children with disability in the world live in resource poor settings where the role of the family is crucial in ensuring that these children survive and thrive. Despite their critical role, evidence is lacking on how to provide optimal support to these families. This study explores the impact of a participatory training programme for caregivers delivered through a local support group, with a focus on understanding caregiver wellbeing.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>A qualitative longitudinal study was conducted to investigate the impact of a training programme, \u201cgetting to know cerebral palsy,\u201d with caregivers on their wellbeing. Eighteen caregivers, from four districts, were interviewed up to three times over 14\u00a0months, to assess impact and the reasons for any changes.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Low levels of knowledge, high levels of stigma, physical and emotional exhaustion, and often difficult family relationships with social exclusion of the child and caregiver were common themes at the outset. Caregivers struggled to combine their caring and economic activities. This was exacerbated by the common absence of the father. Two months after completion of the training, their reported wellbeing had improved. The reasons for this were an improved understanding about their child's condition, positive attitudinal change towards their child, feelings of hope, and through the group support, a profound realisation that they are \u201cnot on their own.\u201d While relationships within the family remained complex in many cases, the support group offered an important and alternative social support network.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>This study illustrates the many benefits of a relatively simple caregiver intervention, which has the potential to offer a mechanism to provide sustainable social support for caregivers and children with cerebral palsy. Any future programme needs to also address more structural issues, including stigma and discrimination, and strengthen approaches to family engagement.<\/jats:p><\/jats:sec>","DOI":"10.1111\/cch.12618","type":"journal-article","created":{"date-parts":[[2018,9,27]],"date-time":"2018-09-27T07:05:07Z","timestamp":1538031907000},"page":"45-53","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":105,"title":["A support programme for caregivers of children with disabilities in Ghana: Understanding the impact on the wellbeing of caregivers"],"prefix":"10.1111","volume":"45","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-0347-0126","authenticated-orcid":false,"given":"Maria","family":"Zuurmond","sequence":"first","affiliation":[{"name":"International Centre for Evidence in Disability London School of Hygiene and Tropical Medicine  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Gifty","family":"Nyante","sequence":"additional","affiliation":[{"name":"University of Ghana  Accra Ghana"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Marjolein","family":"Baltussen","sequence":"additional","affiliation":[{"name":"CBM East Africa Advisor Community Based Inclusive Development  Kigali Rwanda"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Janet","family":"Seeley","sequence":"additional","affiliation":[{"name":"London School of Hygiene and Tropical Medicine  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jedidia","family":"Abanga","sequence":"additional","affiliation":[{"name":"PCG\u2010Health Coordination Office  Accra Ghana"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tom","family":"Shakespeare","sequence":"additional","affiliation":[{"name":"Norwich Medical School University of East Anglia  Norwich UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Martine","family":"Collumbien","sequence":"additional","affiliation":[{"name":"Faculty of Public Health and Policy London School of Hygiene &amp; Tropical Medicine  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sarah","family":"Bernays","sequence":"additional","affiliation":[{"name":"Sydney School of Public Health, Sydney Medical School London School of Hygiene and Tropical Medicine  London UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,9,27]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2011.01327.x"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-1-4684-2253-5"},{"key":"e_1_2_9_4_1","volume-title":"Visual research methods","author":"Banks M.","year":"1995"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1097\/00001163-200307000-00002"},{"key":"e_1_2_9_6_1","unstructured":"Bowling A.(1999).Health\u2010related quality of life: A discussion of the concept its use and measurement background: The \u2018quality of life\u2019 By A. Bowling athttp:\/\/info.worldbank.org\/etools\/docs\/library\/48475\/m2s5bowling.pdf. Paper presented at the Adapting to Change Core Course September 1999 accessed 2\/01\/2018."},{"key":"e_1_2_9_7_1","unstructured":"Bowling A.(2014).Quality of life: Measures and meanings in social care research."},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0182214"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11205-008-9310-z"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/1359105308093860"},{"key":"e_1_2_9_11_1","unstructured":"Centers for Disease Control. (2015).The social\u2010ecological model: A framework for prevention athttps:\/\/www.cdc.gov\/violenceprevention\/overview\/social\u2010ecologicalmodel.html."},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1186\/1752-4458-6-1"},{"issue":"13","key":"e_1_2_9_13_1","first-page":"61835","article-title":"Cerebral palsy","author":"Colver A.","year":"2013","journal-title":"The Lancet"},{"key":"e_1_2_9_14_1","volume-title":"Research design: Qualitative, quantitative, and mixed methods approaches","author":"Creswell J. W.","year":"2013"},{"key":"e_1_2_9_15_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11205-008-9312-x"},{"key":"e_1_2_9_16_1","article-title":"Health\u2010related quality of life of caregivers of children with cerebral palsy and minor health problems in Zimbabwe: a descriptive, comparative cross\u2010sectional study","volume":"5","author":"Dambi J.","year":"2015","journal-title":"Int J Sci Res Publ"},{"key":"e_1_2_9_17_1","doi-asserted-by":"publisher","DOI":"10.4102\/ajod.v4i1.168"},{"key":"e_1_2_9_18_1","doi-asserted-by":"publisher","DOI":"10.5463\/dcid.v27i3.530"},{"key":"e_1_2_9_19_1","doi-asserted-by":"publisher","DOI":"10.1177\/1368431010382762"},{"key":"e_1_2_9_20_1","article-title":"Pediatric cerebral palsy in Africa where are we?","author":"Donald K. A.","year":"2014","journal-title":"Journal of Child Neurology"},{"key":"e_1_2_9_21_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073814549245"},{"key":"e_1_2_9_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.spen.2014.01.001"},{"key":"e_1_2_9_23_1","unstructured":"Dornan P. &Woodhead M.(2015).How inequalities develop through childhood: Life course evidence from the young lives cohort study. Innocenti Discussion Papers."},{"key":"e_1_2_9_24_1","volume-title":"Suicide: A study in sociology","author":"Durkheim E.","year":"1952"},{"key":"e_1_2_9_25_1","doi-asserted-by":"publisher","DOI":"10.1111\/cch.12462"},{"key":"e_1_2_9_26_1","volume-title":"Stigma: Notes on the management of spoiled identity","author":"Goffman E.","year":"2009"},{"key":"e_1_2_9_27_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2214.2010.01124.x"},{"key":"e_1_2_9_28_1","volume-title":"Contexts of kinship: An essay in the family sociology of the Gonja of northern Ghana","author":"Goody E. N.","year":"2005"},{"key":"e_1_2_9_29_1","doi-asserted-by":"publisher","DOI":"10.1111\/1467-9566.00316"},{"key":"e_1_2_9_30_1","volume-title":"Qualitative methods for health research","author":"Green J.","year":"2009"},{"key":"e_1_2_9_31_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0277-9536(02)00511-7"},{"key":"e_1_2_9_32_1","doi-asserted-by":"publisher","DOI":"10.1080\/01436597.2011.604520"},{"key":"e_1_2_9_33_1","doi-asserted-by":"publisher","DOI":"10.2105\/AJPH.2013.301301"},{"key":"e_1_2_9_34_1","unstructured":"Knowles M. (1984).The adult learning theory\u2014Andragogy. Retrieved fromhttps:\/\/elearningindustry.com\/the\u2010adult\u2010learning\u2010theory\u2010andragogy\u2010of\u2010malcolm\u2010knowles"},{"key":"e_1_2_9_35_1","doi-asserted-by":"publisher","DOI":"10.3390\/ijerph15030514"},{"key":"e_1_2_9_36_1","unstructured":"LSHTM & Hambisela. (2013).Getting to know cerebral palsy: Working with parent groups\u2014A training resource for facilitators parents caregivers and persons with cerebral palsyretrieved fromhttp:\/\/disabilitycentre.lshtm.ac.uk\/2013\/08\/01\/publication\u2010of\u2010getting\u2010to\u2010know\u2010cerebral\u2010palsy\u2010manual\/"},{"key":"e_1_2_9_37_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2017-313087.4"},{"key":"e_1_2_9_38_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.mhp.2018.05.003"},{"key":"e_1_2_9_39_1","doi-asserted-by":"publisher","DOI":"10.1067\/mpd.2000.110135"},{"key":"e_1_2_9_40_1","volume-title":"Tackling stigma in developing countries: The key role of families","author":"McConkey R.","year":"2016"},{"key":"e_1_2_9_41_1","doi-asserted-by":"publisher","DOI":"10.1080\/713671113"},{"key":"e_1_2_9_42_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.inhe.2009.11.004"},{"key":"e_1_2_9_43_1","doi-asserted-by":"publisher","DOI":"10.1093\/her\/16.3.255"},{"key":"e_1_2_9_44_1","first-page":"1","article-title":"Maternal experiences of caring for an infant with neurological impairment after neonatal encephalopathy in Uganda: a qualitative study","author":"Nakamanya S.","year":"2014","journal-title":"Disability & Rehabilitation(0)"},{"key":"e_1_2_9_45_1","doi-asserted-by":"publisher","DOI":"10.1080\/10810730.2014.930213"},{"issue":"1","key":"e_1_2_9_46_1","first-page":"19","article-title":"Conceptualization of cerebral palsy: Experiences of caregivers of children with cerebral palsy in Ghanaian rural communities","volume":"1","author":"Nyante G.","year":"2017","journal-title":"Numid Horizon International Journal of Nursing and Midwifery"},{"key":"e_1_2_9_47_1","doi-asserted-by":"publisher","DOI":"10.1093\/heapol\/czi003"},{"key":"e_1_2_9_48_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2011.04068.x"},{"key":"e_1_2_9_49_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.socec.2006.12.004"},{"key":"e_1_2_9_50_1","doi-asserted-by":"publisher","DOI":"10.1111\/inr.12022"},{"key":"e_1_2_9_51_1","doi-asserted-by":"publisher","DOI":"10.1093\/0198287976.003.0003"},{"key":"e_1_2_9_52_1","doi-asserted-by":"publisher","DOI":"10.3402\/ejpt.v5.25338"},{"key":"e_1_2_9_53_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12913-016-1383-9"},{"key":"e_1_2_9_54_1","doi-asserted-by":"publisher","DOI":"10.1016\/S0140-6736(09)62042-0"},{"key":"e_1_2_9_55_1","doi-asserted-by":"publisher","DOI":"10.1080\/13548500600595160"},{"key":"e_1_2_9_56_1","doi-asserted-by":"publisher","DOI":"10.1136\/archdischild-2012-302066"},{"key":"e_1_2_9_57_1","doi-asserted-by":"publisher","DOI":"10.5463\/dcid.v26i2.414"},{"key":"e_1_2_9_58_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0202096"}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fcch.12618","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/cch.12618","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,9,15]],"date-time":"2023-09-15T01:31:46Z","timestamp":1694741506000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/cch.12618"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2018,9,27]]},"references-count":57,"journal-issue":{"issue":"1","published-print":{"date-parts":[[2019,1]]}},"alternative-id":["10.1111\/cch.12618"],"URL":"https:\/\/doi.org\/10.1111\/cch.12618","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2018,9,27]]},"assertion":[{"value":"2018-03-28","order":0,"name":"received","label":"Received","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-08-12","order":1,"name":"accepted","label":"Accepted","group":{"name":"publication_history","label":"Publication History"}},{"value":"2018-09-27","order":2,"name":"published","label":"Published","group":{"name":"publication_history","label":"Publication History"}}]}}