Support needs of primary caregivers caring for children with Autism Spectrum Disorder in Kimberley
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Date
2022
Authors
Mathane, Poppy Elizabeth
Journal Title
Journal ISSN
Volume Title
Publisher
University of the Free State
Abstract
Autism Spectrum Disorder (ASD) is a chronic neurodevelopmental disorder with various degrees, characterised by impairments in communication, socialisation and motor behaviour. The study aimed to explore and describe the support needs of primary caregivers caring for children with an autism spectrum disorder in Kimberley. Although studies on primary caregivers’ needs were done in other countries and provinces, as well as on other childhood conditions requiring caregiving, there was no proof of this type of study done in Kimberley.
The research methodology used was a qualitative, explorative and descriptive design. Focus group discussions were used to collect data from participants recruited at the Robert Mangaliso Sobukwe Hospital in Kimberley. Twenty-seven (27) participants participated in four focus groups. Primary caregivers of children with ASD who were invited to participate had to fit the criteria of being a primary caregiver (including mom, dad, foster parent, friend, granny or anyone caring for the child). They had to understand and speak English, Setswana or Afrikaans (These are the languages predominantly spoken in Northern Cape), reside in Kimberley, taking care of a child and/or children below 18 years diagnosed with ASD. Primary caregivers had to give consent to participate in the study. As stated in Tesch's coding steps, an audio recorder was used during the focus group discussions and transcribed.
The themes identified during data analysis were healthcare, financial needs, basic education and social support needs. Sub-themes under healthcare focused on access to healthcare, health information, community awareness, and lack of knowledge on care aspects and training. Under financial needs, sub-themes identified were transport and nutrition. For basic education, ECD centre and special education were the sub-themes. Lastly, stigma, psychological well-being and family support formed part of the social support needs.
The trustworthiness of the information collected was supported by ensuring the criteria of credibility, transferability, confirmability and dependability. The researcher recommended that the support needs of primary caregivers caring for children with ASD should be attended to by family members, healthcare professionals and community members. Such recommendations focus on information, education and training of all stakeholders.
Description
Dissertation (MNurs.(Nursing))--University of the Free State, 2022