12 Journal of Intellectual Disability - Diagnosis and Treatment, 2024, 12, 12-21 E-ISSN: 2292-2598/24 There is always Sorrow: Risk Factors Faced by Parents of Children Presenting with Severe Intellectual Disabilities Sandisiwe Buthelezi * and Daphney Mawila * Department of Educational Psychology, University of Johannesburg, South Africa Abstract: Background: This study investigates the risk factors faced by parents of children with Severe Intellectual Disabilities. Methods: This study used a phenomenological research design within a qualitative research approach. Six parents of children diagnosed with Severe Intellectual Disability at Learners with Special Educational Needs schools were purposively selected to participate in this study. Data were collected through semi-structured interviews and a focus group. Thematic data analysis was used to analyze data. Results: The findings of this study revealed that parents of children with Severe Intellectual Disabilities faced risks that exacerbated negative outcomes. Psychological distress, social exclusion and isolation, financial burdens, and lack of access to formal education were risk factors that hindered their ability to care for and support their children. Conclusions: Based on these findings, the study concluded that parents need access to multidisciplinary teams of healthcare professionals to support them in combatting the risk factors they face. Keywords: Children, parents, severe intellectual disability, risk factors. 1. INTRODUCTION The birth of a child typically marks the onset of a thrilling new chapter that is often accompanied by a myriad of emotions. Peer and Hillman contend that there are significant changes in the lifestyle and identity of a household brought on by a newborn. However, when a child is born with a disability, such as a Severe Intellectual Disability (SID), the experience of parenthood is altered as preconceived plans for the future need to be revised and expectations recalibrated [1]. The altered parental expectations and the need to adapt to caring for a child with SID impact the ability to parent. While the inherent value and rights of children with SIDs remain equal to those of other children, including the right to grow up in inclusive, protective family environments, [2] roviding nurturing homes for children with SIDs is not always attainable. Families are burdened with unprecedented challenges, which may include access to quality education, financial constraints, and a lack of access to health facilities [1]. These unique challenges lead to an overall poor relationship between parents and their children with SIDs as a result of the negative impact on their ability to care for their children. The risk factors of having a child with a disability have been widely studied [3, 4]. For example, Olsson,Larsman, and Hwang [5] conducted a comparative study on the well-being and quality of life of parents who had children with and without *Address correspondence to these authors at the Department of Educational Psychology, University of Johannesburg, South Africa; E-mail: sandib985@gmail.com, dmawila@uj.ac.za intellectual disabilities. Datta, Russell, and Gopalakrishna [6] investigated characteristics that could predict a burden upon the parents of a child with an intellectual disability. In South Africa, studies have highlighted parents’ experiences when navigating the health system and accessing disability services [7, 8]. However, there is a shortage of knowledgeon SIDs, both internationally and locally. Thus, this study focused on understanding the risk factors faced by parents who have children diagnosed with SIDs. Having witnessed the challenges faced by parents and the insufficient support system, the researchers aimed to delve more deeply into the risk factors of South African parents with children who have SIDs. The study's objective was to investigate these risk factors to provide interventions for parents of children who have SIDs. This study also sought to contribute to the knowledge base for parents in similar situations, raising awareness and humanizing the experiences of those affected by SIDs. 2. LITERATURE REVIEW 2.1. Severe Intellectual Disability Intellectual Disability (ID) is defined by the Diagnostic and Statistical Manual (DSM-5-TR)[9] as a mental impairment that leads to an individual’s inability to meet expected milestones in personal independence, social responsibility, and other aspects of daily living tasks. Given that there are varying levels of ID (Mild, Moderate, Severe, and Profound), this study focused on SIDs. Zoning in SID allows us to study an often overlooked and glossed-over disability,