Perception, knowledge and experience of caregivers supporting Autistic individuals or persons that may be Autistic in Grenada: An exploratory study

Edwards, Leo and Cranmer, Sue (2020) Perception, knowledge and experience of caregivers supporting Autistic individuals or persons that may be Autistic in Grenada: An exploratory study. PhD thesis, Lancaster University.

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Abstract

The literature suggests that the complexity of Autism Spectrum (AS) and the multidimensional care needs of Autistic individuals, often require the involvement of family and caregivers to help with providing support and advocating for an improved quality of life for the person on the spectrum and their family. This involvement in the life of the autistic person can be an enriching and at times challenging and stressful experiences for families and caregivers. To this end, this thesis explores the perception, knowledge and experience of caregivers supporting Autistic individuals or persons that may be Autistic in Grenada. To date, most of the research on autism has been conducted in developed and English speaking countries where there is extensive professional support and services. There is a dearth of research on the prevalence, identification and experiences of people living with autism and their caregivers in non-Western, less affluent and developing countries like Grenada. A sample of 15 caregivers supporting Autistic individuals or persons that may be Autistic participated in this study. A narrative ethnography approach was used, including a semi-structured narrative interview supported by interview observation. This qualitative methodology seemed most appropriate to capture and reflect the indigenous account on the perception, knowledge and experience about autism from Grenadian caregivers. This study makes an original contribution to the field as the primary research exploring the lived realities of caregivers in Grenada supporting Autistic individuals or persons that may be Autistic and also contributes culturally contextual and empirical knowledge to the literature. Four themes that emerged from the synthesis of the research finding include 1 perception of autism; 2 thoughts on the caregiving role/task; 3 supporting the supporter, 4 barriers to assistance and 5 support; and, aspiration, expectations and ideas. Each theme has associated subcategories that are discussed in turn to elucidate the caregiver's understandings and lived realities supporting an autistic person or someone that maybe autistic. This research has implications for practice and policy development directed towards reducing stigma and exclusion of autistic people and their caregiver. This research can also provide education to caregivers and the Grenadian public on the cause of autism spectrum disorder and addressing meaningful supports for the person on the spectrum and their caregiver.