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Dual diagnosis of autism and hearing loss: Caregivers’s experience of diagnosis and intervention

De Villiers, Ayesha (2017-12)

Thesis (MEdPsych)--Stellenbosch University, 2017

Thesis

ENGLISH ABSTRACT : Caregivers are central role players throughout the life span of a child with special needs and they form part of a family within the broader network of their community and social spheres. Bronfenbrenner’s bio-ecological system theory provides a theoretical framework which depicts the interactive nature of this process which starts before receiving a conclusive diagnosis. This study explores the lived experiences of caregivers of three children with a dual diagnosis of autism spectrum disorder and hearing loss as they navigate the maze of intervention and support after diagnosis within the South African context. The study is qualitative in nature and utilised a case study research design to explore the experiences of caregivers. The participants were selected by means of purposive sampling and data were collected through semi-structured interviews as well as a document study of learner files. Data was analysed through the process of thematic analysis and presented through a discussion of the findings. Research findings confirmed the complexity of the experiences and needs, not only of children with this dual diagnosis, but also of their caregivers who were considered as the project managers of their childrens’ intervention programmes. Caregiver experiences were largely influenced by their own level of participation or withdrawal, their knowledge base as well as access to services and information throughout the process of intervention. Proximal processes between caregivers and the school community served as support for the establishment of an effective multi-disciplinary team approach to offer support which will continue throughout the life span of the child with a dual diagnosis of autism spectrum disorder and hearing loss. The researcher derived from the research findings recommendations for professionals who provide services to caregivers of children with this dual diagnosis.

AFRIKAANSE OPSOMMING : Versorgers word beskou as kernrolspelers dwarsdeur die lewensduur van ’n kind met spesiale behoeftes en boonop vorm hulle deel van ’n familie binne die breë netwerk van hul gemeenskap en sosiale sfere. Bronfenbrenner se bio-ekologiese perspektief verskaf ’n teoretiese raamwerk wat die interaktiewe aard van hierdie proses uitbeeld wat reeds voor die verkryging van ’n finale diagnose begin. Hierdie studie verken die geleefde ervarings van versorgers van drie kinders met ’n dubbele diagnose van outismespektrum-versteuring en gehoorverlies, soos hulle die doolhof van ingrypings- en ondersteuningsdienste binne die Suid-Afrikaanse konteks navigeer. Die studie is kwalitatief van aard en die navorser het van ’n gevallestudie-navorsingsontwerp gebruik gemaak om die ervarings van versorgers te ondersoek. Die deelnemers is deur middel van doelgerigte steekproefneming gekies en data is deur middel van deels gestruktureerde onderhoude sowel as ’n dokumentstudie ingesamel. Die data is geanaliseer deur middel van tematiese ontleding waarna dit deur middel van ’n bespreking aangebied is. Die navorsingsbevindinge bevestig nie net die kompleksiteit van die ervaringe en behoeftes van kinders met ’n dubbele diagnose nie, maar ook dié van hul versorgers, wie beskou word as die projekbestuurders van hul kind se ingrypingsprogram. Versorgers se ervaringe is grotendeels beïnvloed deur hul persoonlike vlak van betrokkenheid óf onttrekking, hulle kennisbasis sowel as hul toegang tot dienste en inligting regdeur die ingrypingsproses. Proksimale prosesse wat tussen die versorgers en die skoolgemeenskap geskied dien as ondersteuning vir die vestiging van ’n effektiewe, multi-dissiplinêre spanbenadering wat ondersteuning bied dwarsdeur die lewe van ’n kind met ’n dubbele diagnose van outismespektrum-versteuring en gehoorverlies. Die bevindinge verkry uit die navorsing, word vervat in aanbevelings aan professionele persone wat dienste aan ouers van kinders met ’n dubbele diagnose verskaf.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/102891
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