The experiences of families raising an autistic child: rapid review
Autism is becoming more prominent in South Africa and in the rest of the world. The family that raises an autistic child plays a key role in the treatment and lifelong management of the child. This responsibility goes with demanding challenges that are unique to every child and situation. A deeper understanding of the psychosocial experiences and impact of autism and its symptoms on the involved families is ultimately essential in the development of relevant and scientific interventions and support programmes. Objectives: The aim of this study was to conduct a rapid review to explore, analyse, synthesise, and integrate existing scientific literature on the pre- and post-diagnostic psychosocial experiences of families that raise an autistic child. A good and integrative understanding of the experiences of these families is critical, as it provides insight into their unique challenges, daily realities, and the impact of autism on family dynamics. This study was guided by the following two research questions: (1) What are the psychological experiences of families that raise an autistic child pre- and post-diagnosis? (2) What are the social experiences of families that raise an autistic child pre- and post-diagnosis? A rapid review was conducted to attempt to answer these two research questions. The rapid review focused on synthesising and integrating recent and relevant international and South African literature to gain a better understanding of the psychosocial experiences of families that raise an autistic child. The first step of the process was to conduct a systematic and explicit scope search. Various electronic databases, as well as the help of the North-West University librarian, were used to conduct a thorough and systematic literature search. The initial search produced 142 results. After the initial scope search, the identified studies were screened by title and abstract for relevance. After the screening process, 34 articles remained to be appraised. In the appraisal process, scientifically sound appraisal tools were used to identify those studies that should be included in the research study. Studies were excluded based on not being applicable to the review, not meeting the inclusion criteria, or being rated as poor-quality research. A final number of nine studies were identified for inclusion in the review. These studies were found to be relevant to the inclusion criteria and research questions, as well as of acceptable quality, as agreed upon by both reviewers. A thematic synthesis was conducted in order to inductively analyse the findings from the nine retrieved studies. The data-extraction process was carefully planned in order to ensure that data were extracted accurately. The following themes were identified: • Psychological experiences (pre- and post-diagnosis), which included emotions experienced, grieving process, parenting, and family dynamics. • Social experiences (pre- and post-diagnosis), which included lack of support services and social awareness. • Psychosocial coping strategies (pre- and post-diagnosis), which included isolation, information seeking, meaning-making, and support system. The identified themes indicated that the psychosocial experiences of families that raise an autistic child were multidimensional and fit well within a contextual and systemic perspective. To address the needs and opportunities identified in this study, a contextual and systemic perspective is indicated. Internationally and in South Africa, family-focused research and the psychosocial wellbeing and quality of life of families are increasingly becoming the focus of research attention. The family quality of life (FQOL) framework provides a positive approach that seeks to improve and optimise the quality of life of families that raise a child with a disability. The psychosocial themes identified in the analysis and synthesis of the identified articles in this study fit perfectly into the conceptual fields of the FQOL framework, namely individual concepts, family unit concepts, procedural concepts, and systemic concepts. A deeper and better understanding of the psychosocial experiences of families that raise an autistic child within these various concepts is essential for informing scientifically sound interventions and support programmes. The aim of these programmes and interventions should be to activate and sensitise the whole system involved so that families that raise a child with autism can experience satisfaction, joy, and quality family life. Recommendations in this regard include that families need to be informed of services available for autism and psychosocially supported so that they feel empowered to deal with the challenges at hand. In addition, they need to be ensured of reliable, competent, and supportive professional and personal support networks that work together to raise societal awareness and sensitivity towards children with autism and especially their families.
- Health Sciences