Abstract
The overall purpose of the study was to investigate the parental risk and protective factors in supporting their children with Severe Intellectual Disabilities (SIDs). A SID diagnosis means that the pre-planned future and expectations of parents have to be adjusted.
Parents of children diagnosed with SIDs are presented with a unique set of unprecedented challenges and stressors that often have a negative impact on their wellbeing. They face challenges such as chronic sorrow, disparaging stigmas, lack of access to schooling, dwindling support from friends and family and financial difficulties due to medical bills and specialised services. Despite these challenges, parents of children with SIDs demonstrate markers of resilience. The theoretical framework that guided and gave meaning to the study was the Social Ecological Model of Resilience. This framework enabled the researcher to explain and analyse how the reciprocity of interactions between parents of children with SIDs and their environment enabled them to become resilient even though they were exposed to a multitude of risks.
This study used a phenomenological research design within a qualitative approach and interpretivist paradigm. Parents of children diagnosed with SIDs at Learners with Special Educational Needs schools were purposefully selected to participate in this study. Data was collected through semi-structured interviews and a focus group. Data collected was categorised into identified patterns and thereafter analysed thematically.
The findings of this study revealed that parents of children with SIDs faced risk factors that exacerbated negative outcomes. Psychological stresses such as depression, financial burdens and social exclusion were adversities that hindered their ability to support their children. However, these factors were mitigated by factors in their social ecology that enabled them to adapt and support their children with SIDs. The participants highlighted that coping, family support and spirituality were factors that not only mitigated risk factors but also enabled them to support their children with SID. Based on the findings, the study concluded that multidisciplinary teams of healthcare professionals such as occupational therapists, speech therapists, dieticians, physiotherapists and educational psychologists be availed for parents. They could be resources used to empower parents with nutrition management, daily living programmes and problem-solving skills to manage their children with SIDs. The study also recommends the use of special schools as resource centres for parents and as a place to facilitate community mentors that provide skills and strategies for parents based on their own experiences.
Keywords: Severe Intellectual Disability, Risk Factors, Protective Factors, Socio- Ecological Resilience, Parents, Challenges and Resilience