Caring for children with disabilities in Kilifi, Kenya: what is the carer's experience?

Child: Care, Health and Development
Joseph GonaS Hartley

Abstract

Carers of children with disabilities have repeatedly highlighted their feelings of discrimination, stigma and exclusion in many domains of their lives. There is little research from Africa addressing these issues. This study investigated the challenges encountered by these carers and the mechanisms of coping with these challenges while caring for children with disabilities in a poor rural setting in Kenya. Thirty-five in-depth interviews were conducted with 20 carers, 10 community members and 5 primary school teachers. Ten unstructured observations were also conducted in home environments to observe mechanisms used in meeting the needs of the children with disabilities. All interviews were tape-recorded, transcribed and translated from the local dialect. Note-taking was performed during all the observations. Data were stored in NVivo software for easy retrieval and management. The arrival of a disabled child severely impairs the expectations of carers. Hospital staff underestimate carers' emotional distress and need for information. Fear for the future, stress, rumour-mongering and poverty are encountered by carers. As they grapple with lost expectations, carers develop positive adaptations in the form of learning new skills, l...Continue Reading

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Citations

Dec 25, 2013·Pediatric Research·Anna C SealeUNKNOWN Neonatal Infections Estimation Team
Sep 3, 2013·Disability and Rehabilitation·Karen BunningSally Hartley
Mar 25, 2014·Seminars in Pediatric Neurology·Melissa GladstoneElizabeth Molyneux
Sep 6, 2013·Rehabilitation Nursing : the Official Journal of the Association of Rehabilitation Nurses·Sonay BilginDerya Tanriverdi
Jan 13, 2015·Seminars in Fetal & Neonatal Medicine·Bolajoko O Olusanya
Oct 21, 2016·Child: Care, Health and Development·C Masulani-MwaleM Gladstone
May 10, 2018·BMC International Health and Human Rights·Joseph K GonaKaren Bunning
Jan 23, 2013·African Journal of Disability·Anna McNally, Hasheem Mannan
Oct 4, 2012·African Journal of Disability·Heather M Aldersey
Sep 28, 2017·African Journal of Disability·Clever Taderera, Herna Hall
Mar 23, 2019·International Journal of Environmental Research and Public Health·Jemaiyo Chabeda-BartheGladys Chepkemoi Rotich
Jul 19, 2017·Disability and Rehabilitation·Mohammad S Nazzal, Omar M Al-Rawajfah
Oct 17, 2019·International Journal of Environmental Research and Public Health·Tracey SmytheHannah Kuper
Oct 27, 2020·Disability and Rehabilitation·Sankar Sahayaraj MuthukaruppanSankara Raman Srinivasan
Jan 21, 2021·Child: Care, Health and Development·Renee A HepperlenHayley Manley
May 1, 2021·International Journal of Environmental Research and Public Health·Giulia BarbareschiCatherine Holloway
Oct 15, 2020·Disability and Rehabilitation·Mary O HearstPaula Rabaey
Apr 20, 2019·International Journal of Developmental Disabilities·Aysel Karaca, Dilek Konuk Şener

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Software Mentioned

NVivo

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