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

[摘要] ENGLISH ABSTRACT : Caregivers are central role players throughout the life span of a child with special needs andthey 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 whichdepicts the interactive nature of this process which starts before receiving a conclusivediagnosis. This study explores the lived experiences of caregivers of three children with adual diagnosis of autism spectrum disorder and hearing loss as they navigate the maze ofintervention and support after diagnosis within the South African context.The study is qualitative in nature and utilised a case study research design to explore theexperiences of caregivers. The participants were selected by means of purposive samplingand data were collected through semi-structured interviews as well as a document study oflearner files. Data was analysed through the process of thematic analysis and presentedthrough a discussion of the findings.Research findings confirmed the complexity of the experiences and needs, not only ofchildren with this dual diagnosis, but also of their caregivers who were considered as theproject managers of their childrens' intervention programmes. Caregiver experiences werelargely influenced by their own level of participation or withdrawal, their knowledge base aswell as access to services and information throughout the process of intervention. Proximalprocesses between caregivers and the school community served as support for theestablishment of an effective multi-disciplinary team approach to offer support which willcontinue throughout the life span of the child with a dual diagnosis of autism spectrumdisorder and hearing loss. The researcher derived from the research findingsrecommendations for professionals who provide services to caregivers of children with thisdual diagnosis.

[发布机构] Stellenbosch University