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      A qualitative study: Barriers and support for participation for children with disabilities

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      , ,
      African Journal of Disability
      AOSIS OpenJournals

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          Abstract

          Background

          This qualitative–exploratory study examined the barriers to participation amongst children with disabilities in Lusaka, Zambia, from the mothers’ perspective.

          Objectives

          The objectives of this study were to understand how mothers of children with physical and cognitive disabilities who engaged their children in community-based rehabilitation (CBR) services in Lusaka, Zambia, perceived and described (1) the level of support they received and the barriers they encountered in terms of their child’s meaningful social participation; (2) the use and awareness of these barriers to identify and pursue advocacy strategies; and (3) hopes for their child’s future.

          Methods

          Data were collected through semi-structured interviews with each mother in her home. Results: Findings revealed both support and barriers to the child’s social participation in relationship to their family, friends and community. Support also came from the CBR programme and mothers’ personal resourcefulness. Mothers identified their child’s school, their immediate environment and financial burdens as barriers to participation as well as their own personal insecurities and fears. Strategies to overcome barriers included internal and external actions. The mothers involved in the study hope their child’s abilities will improve with continued CBR services. Some mothers described a bleak future for their child due to a lack of acceptance and access to education.

          Conclusion

          The findings of this study suggest the significant role the mother of a child with a disability plays in her child’s social participation. Recommendations include enhancing CBR programming for families, especially for mothers, and advocating on behalf of children with disabilities and their families to attract the attention of policy makers.

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          Most cited references25

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          Qualitative research and evaluation methods.

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            Patterns of participation in recreational and leisure activities among children with complex physical disabilities.

            Children with physical disabilities are at increased risk of limitations to participation in everyday activities. This study describes research examining the participation of children in day-to-day formal and informal activities (excluding mandated academic schooling). Using the Children's Assessment of Participation and Enjoyment (CAPE) measure, data on participation patterns were collected from 427 children (229 males, 198 females; mean age 10 y [SD 2 y 4 mo]; range 6-14 y) with physical limitations and from their families. The primary types of physical disability in the sample included cerebral palsy, spina bifida, acquired brain injury, and musculoskeletal limitations. Findings indicate a broad range of diversity and intensity of participation, with proportionately greater involvement in informal rather than formal activities. Significant differences in participation and enjoyment were found between males and females, and for children more than 12 years of age. Children's participation was less diverse in families reporting lower income, single-parent status, and lower respondent parent education. These findings provide a foundation for an improved understanding of the participation of children with physical disabilities, which can assist families and service providers in planning activities that fit with their child's preferences and ensure active participation.
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              Community participation, supports, and barriers of school-age children with and without disabilities.

              To examine patterns of community participation and environmental factors that affect community participation for school-age children with and without disabilities.
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                Author and article information

                Journal
                Afr J Disabil
                Afr J Disabil
                AJOD
                African Journal of Disability
                AOSIS OpenJournals
                2223-9170
                2226-7220
                25 November 2014
                2014
                : 3
                : 1
                : 112
                Affiliations
                [1 ]Department of Occupational Therapy, Duquesne University, United States of America
                [2 ]Cheshire Homes Society of Zambia, CBR Programme, Zambia
                [3 ]Inclusive Development, CBM International, South Africa
                Author notes
                Correspondence to: Anne Marie Hansen Email: hansen@ 123456duq.edu Postal address: 600 Forbes Avenue, Pittsburgh, Pennsylvania 15219, United States of America
                Article
                AJOD-3-112
                10.4102/ajod.v3i1.112
                5433439
                28730000
                8c651562-bde3-4c71-9432-c7c55574413b
                © 2014. The Authors

                Licensee: AOSIS OpenJournals. This work is licensed under the Creative Commons Attribution License.

                History
                : 30 December 2013
                : 01 August 2014
                Categories
                Original Research

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