{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,4]],"date-time":"2026-08-04T16:15:37Z","timestamp":1785860137741,"version":"3.56.0"},"reference-count":35,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2005,2,16]],"date-time":"2005-02-16T00:00:00Z","timestamp":1108512000000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Child"],"published-print":{"date-parts":[[2005,3]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p><jats:bold>Background<\/jats:bold> Community\u2010based rehabilitation (CBR) was recommended by the World Health Organization in 1989 as the strategy for improving the quality of life of disabled people and their families, which should be built on local knowledge and practices. In Uganda, there is no documentation on how services relate to local knowledge. There is a need for increased knowledge and understanding of how family members cope with their disabled children to provide the basis for future service development.<\/jats:p><jats:p><jats:bold>Methods<\/jats:bold> A qualitative phenomenological design was used to develop an in\u2010depth understanding of how Ugandan families cope with their disabled children in their own communities. Data were collected from 52 families with children with disabilities from five impairment groups, through interviews and observations in three districts of Uganda, one urban, two rural.<\/jats:p><jats:p><jats:bold>Results<\/jats:bold> There are many children with disabilities who are included, loved and cared for by their families. A lot of time and money is spent on seeking a cure. The extended family systems are breaking down and the main burden of caring for a disabled family member generally falls on one, sometimes two, female carers. Male members act as gatekeepers, controlling the key decisions concerning the child and the associated resources.<\/jats:p><jats:p><jats:bold>Conclusions<\/jats:bold> CBR should move the focus of their services away from the disabled individual towards the whole family. It is important to provide accurate information about causes and prevention of impairments, the realities of a cure, support and respite for the female carers, and opportunities for the involvement of fathers. This methodology is a practical mechanism for collecting data that have the potential to positively influence and guide the development of CBR practice in the locality. At a conceptual level the data support the philosophy of inclusion, social integration, the importance of trust and respect, and utilizing a holistic approach. These are eminently transferable to other settings.<\/jats:p>","DOI":"10.1111\/j.1365-2214.2004.00464.x","type":"journal-article","created":{"date-parts":[[2005,2,16]],"date-time":"2005-02-16T21:56:46Z","timestamp":1108591006000},"page":"167-180","source":"Crossref","is-referenced-by-count":80,"title":["How do carers of disabled children cope? The Ugandan perspective"],"prefix":"10.1111","volume":"31","author":[{"given":"S.","family":"Hartley","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"P.","family":"Ojwang","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Baguwemu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"M.","family":"Ddamulira","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"A.","family":"Chavuta","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2005,2,16]]},"reference":[{"key":"e_1_2_7_2_1","volume-title":"CBR a Participatory Strategy in Africa (","author":"Asindua S.","year":"2002"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.6999.251"},{"key":"e_1_2_7_4_1","volume-title":"Re\u2010Examining Family Stress. New Theory and Research","author":"Burr W. R.","year":"1994"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJM198707163170309"},{"key":"e_1_2_7_6_1","volume-title":"Hostility, Coping and Health","author":"Carver C. S.","year":"1992"},{"key":"e_1_2_7_7_1","unstructured":"Chavuta A.(2002)Coping strategies for parents of children with disabilities in three districts in Uganda.Unpublished MSc Thesis.Centre for International Child Health. Institute of Child Health University of London."},{"key":"e_1_2_7_8_1","volume-title":"Disability Liberation and Development.","author":"Coleridge P.","year":"1994"},{"key":"e_1_2_7_9_1","volume-title":"Coping and Social Support in Patients with Chronic Diseases","author":"De Ridder D.","year":"1994"},{"key":"e_1_2_7_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1467-8624.1991.tb01616.x"},{"key":"e_1_2_7_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/1520-6629(198910)17:4<330::AID-JCOP2290170406>3.0.CO;2-B"},{"key":"e_1_2_7_12_1","volume-title":"Prejudice and Dignity","author":"Helander E.","year":"1993"},{"key":"e_1_2_7_13_1","volume-title":"Training in the Community for People with Disabilities.","author":"Helander E.","year":"1989"},{"key":"e_1_2_7_14_1","volume-title":"Community\u2010Based Rehabilitation","author":"ILO, UNESCO","year":"1994"},{"key":"e_1_2_7_15_1","volume-title":"Stress, Appraisal and Coping","author":"Lazarus R. S.","year":"1984"},{"key":"e_1_2_7_16_1","first-page":"221","volume-title":"Handbook of Coping \u2013 Theory, Research, Applications","author":"Maes S.","year":"1996"},{"key":"e_1_2_7_17_1","doi-asserted-by":"publisher","DOI":"10.1136\/bmj.311.6998.182"},{"key":"e_1_2_7_18_1","volume-title":"Qualitative Research and Case Study Applications in Education","author":"Merrimen S. M.","year":"1998"},{"key":"e_1_2_7_19_1","unstructured":"Ministry of Gender Labour and Social Development (MGLSD) (2002)National Community Based Rehabilitation Strategic Plan 2002\u20132006.Ministry of Gender Labour and Social Development."},{"key":"e_1_2_7_20_1","first-page":"38","article-title":"Health care: who pays the bills?","author":"Morris M. M.","year":"1987","journal-title":"The Exceptional Parent"},{"key":"e_1_2_7_21_1","first-page":"50","volume-title":"CBR a Participatory Strategy in Africa. (","author":"Ojwang P.","year":"2002"},{"key":"e_1_2_7_22_1","doi-asserted-by":"publisher","DOI":"10.1016\/0740-5472(94)90044-2"},{"key":"e_1_2_7_23_1","first-page":"201","volume-title":"Qualitative Research \u2013 Theory, Method and Practice (","author":"Perakyla A.","year":"1998"},{"key":"e_1_2_7_24_1","first-page":"24","article-title":"A study of facilitators and inhibitors that affect coping in parents of children with mental retardation in India","volume":"9","author":"Peshawaria R.","year":"1998","journal-title":"Asia Pacific Disability Rehabilitation Journal"},{"key":"e_1_2_7_25_1","volume-title":"Professional Collaboration with Parents of Children with Disabilities.","author":"Porter L.","year":"2000"},{"key":"e_1_2_7_26_1","doi-asserted-by":"publisher","DOI":"10.4324\/9780203413081_chapter_9"},{"key":"e_1_2_7_27_1","doi-asserted-by":"publisher","DOI":"10.1046\/j.1365-2214.2002.00244.x"},{"key":"e_1_2_7_28_1","volume-title":"Health Psychology","author":"Taylor S. E.","year":"1991"},{"key":"e_1_2_7_29_1","first-page":"13","volume-title":"CBR a Participatory Strategy in Africa. (","author":"Thomas M.","year":"2002"},{"key":"e_1_2_7_30_1","unstructured":"Ugandan Bureau of Statistics(2002) Population and housing census. Provisional results http:\/\/http:\/\/www.ubos.org.Ugandan Bureau of Statistics Kampala."},{"key":"e_1_2_7_31_1","volume-title":"World Programme of Action Concerning Disabled Persons.","author":"Unated Nations (UN","year":"1993"},{"key":"e_1_2_7_32_1","volume-title":"The Standard Rules o the Equalisation of Opportunities for Persons with Disabilities","author":"United Nations (UN","year":"1994"},{"key":"e_1_2_7_33_1","volume-title":"Review of the Present Situation of Special Education.","author":"UNESCO","year":"1988"},{"key":"e_1_2_7_34_1","volume-title":"Salamanca Statement and Framework for Action on Special Needs Education.","author":"UNESCO","year":"1994"},{"key":"e_1_2_7_35_1","volume-title":"The State of the World's Children: Early Childhood.","author":"UNICEF","year":"2001"},{"key":"e_1_2_7_36_1","unstructured":"USDC(2002)Annual Review Translating Policy into Action.2001\u20132002 Uganda Society for Disabled Children."}],"container-title":["Child: Care, Health and Development"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/api.wiley.com\/onlinelibrary\/tdm\/v1\/articles\/10.1111%2Fj.1365-2214.2004.00464.x","content-type":"unspecified","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/pdf\/10.1111\/j.1365-2214.2004.00464.x","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2023,10,13]],"date-time":"2023-10-13T07:23:49Z","timestamp":1697181829000},"score":1,"resource":{"primary":{"URL":"https:\/\/onlinelibrary.wiley.com\/doi\/10.1111\/j.1365-2214.2004.00464.x"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2005,2,16]]},"references-count":35,"journal-issue":{"issue":"2","published-print":{"date-parts":[[2005,3]]}},"alternative-id":["10.1111\/j.1365-2214.2004.00464.x"],"URL":"https:\/\/doi.org\/10.1111\/j.1365-2214.2004.00464.x","archive":["Portico"],"relation":{},"ISSN":["0305-1862","1365-2214"],"issn-type":[{"value":"0305-1862","type":"print"},{"value":"1365-2214","type":"electronic"}],"subject":[],"published":{"date-parts":[[2005,2,16]]}}}