53 Being a caregiver of a child with ASD has been shown to involve encountering problems and demands daily that can cause substantial amounts of stress and impact mental health and well- being negatively, more than that of parents of typically developing children or non-ASD disabilities.
Experiences of parents of children with ASD are filled with a plethora of challenges and stressors that are both intrinsically related to the child’s characteristics (i.e. behavioural difficulties) and extrinsically related, however brought about or amplified by their child’s diagnosis.
Parents face the burdensome task of caring for a child with ASD alongside systemic stressors regarding diagnosis, barriers to accessing services, daily life obstacles and the impact ASD has on the family unit and parents themselves.
Prior to diagnosis parents face growing concerns about their child’s development and the arduous task of attempting to access appropriate and supportive guidance from healthcare providers. Parents encounter a tumultuous journey of diagnostic delays, dismissals from practitioners regarding their concerns and a number of misdiagnoses during the lengthy and frustrating diagnosis process while they attempt to understand and managing their child’s concerning and disruptive behaviour. This is compounded by socioeconomic divides and stressors that the majority of South Africans face.
The task of caring for a child with ASD is non-stop, 24/7 task and requires a substantial amount of effort and time from care-givers. Parents face daily obstacles ranging from ensuring basic daily care for their child to stepping into the role of educator, advocate and essentially their child’s voice. Parents report feeling overwhelmed, exhausted and continuously drained as they take on these tasks alone. This suggests that daily experiences are demanding and taxing on parents and their well-being.
Despite these numerous challenges and stressors parents face, many report positive experiences and positive benefits of having a child with ASD. The ability to adapt and engage with the
‘new normal’ they are presented with is essential on the path towards acceptance. Parents who were able to employ coping strategies that effectively changed their perception of the situation reported greater adaptation and family harmony.
This emphasises that it is possible to adapt and embrace the multitude of obstacles and stressors of having a child with ASD. In order to assist parents and provide adequate and appropriate
54 supportive interventions, practitioners need to understand the dynamics and under-workings of this unique parenting experience.
Karst and Van Hecke (2012) argue that despite the evidence suggesting the importance of parental experiences and in turn the impact of parents on the child, there is an insufficient collection of research on interventions designed to help individuals with ASD and their families. Greater external support is needed for families who have ASD children. Furthermore, increased public awareness of ASDs is also needed. Interventions directed at parents also need to recognise autistic traits which may be present in some family members and be designed accordingly.
An understanding and awareness of the difficulties of raising an ASD child may provide a greater supportive and facilitative environment for parents (Mitchell & Holdt, 2014) and in turn impact child prognosis.
Despite a recent ‘growth spurt’ in available research on ASD in South Africa, the dearth of literature available on the incidence, prevalence and impact of ASD within a South African context remains problematic as the majority of the literature emerges from upper-middle class countries, lacks appropriate sample characteristics and therefore is limited in its applicability to a South African context.
The current South African research that is available is limited but suggests that ASD continues to be under-identified, access to services is incredibly difficult without abundant financial resources (problematic even with these resources), and there is an overall lack of support from healthcare practitioners. These contextual factors serve as factors further compounding what has been shown to be an extremely strenuous and demanding task.
With this is mind, this study aimed to generate an understanding of contextually relevant circumstances that contribute towards parents’ experiences and difficulties in relation to managing a child with ASD. By investigating the psychosocial experiences and challenges that impact parental functioning, this study aimed to highlight these stressors and obstacles so as to inform future intervention in the area of psychosocial adjustment for parents of children with ASD.
55 CHAPTER THREE
METHODOLOGY
56 Chapter 3 will include six subsections. The first subsection will include conceptual understanding and discussion of the Resilience Model. The next subsection will discuss the research design including the importance of qualitative designs, the use of semi-structured interviews and thematic analysis as well as describing the procedural steps involved. This section will also discuss objectivity and the role of the researcher, followed by a subsection on dependability and credibility. The research methodology section will begin with the methodological approaches of previous South African studies, followed by participant selection, sample description, data collection and analysis of the current study, concluding with reflexivity. The final subsections will include possible limitations and ethical considerations.
3.1 CONCEPTUAL UNDERSTANDING