From general developmental disability to 22Q11.2 deletion syndrome: understanding parental experiences: a mixed methods analysis

Research Doctorate - Doctor of Philosophy (PhD)The negative psychological impact of having a child with a developmental disability has been well-recorded. Although positive psychological constructs (e.g., psychological growth) are beginning to receive more attention, they are relatively unexplored in parents who have a child with a developmental disability. The aim of this thesis is to describe the experience of parenting a child with a developmental disability, particularly the more positive aspects. One developmental disability that offers unique challenges and is poorly researched is 22q11.2 deletion syndrome (22q11DS). Therefore, this thesis specifically focuses on 22q11DS and uses a concurrent mixed methods design. Although children with 22q11DS have a characteristic neurocognitive and behavioural phenotype, the disabilities experienced by these children and the challenges faced by their parents can be extrapolated to the wide range of developmental disabilities. Considering the wider experience of parents of children with a variety of developmental disorders, predictors of psychological growth were examined through a cross-sectional survey. Many participants experienced at least some psychological growth as measured by the Psychological Wellbeing - Post-Traumatic Changes Questionnaire (Joseph, Maltby, Wood, Stockton, & Hunt, 2011). A regression model demonstrated that increased: a) use of positive reappraisal as a coping mechanism; b) parental perceptions of coordinated and comprehensive health care; and c) child’s age were associated with greater psychological growth. Given these findings, the thesis then sought to understand whether psychological growth despite potential distress was possible from parenting a child with a poorly understood and often tardily diagnosed developmental disability, 22q11.2 deletion syndrome (22q11DS). Semi-structured interviews informed by the methodology Interpretative Phenomenological Analysis (IPA) explored the experience of parenting a child with 22q11DS at two different stages of parenting: a) a young child with 22q11DS; and b) an adult child with 22q11DS. As 22q11DS is a condition that has wide variability in presentation, with little knowledge about the impact it has on parents’ psychological wellbeing, IPA informed a detailed and open exploration of this phenomenon. Parents who had a young child with 22q11DS provided rich data that was interpreted as anticipatory traumatic distress, systemic stigma, confusion at professional smoke screens, and ‘not knowing’. However, they were able to redefine their unanswered fear, guilt, loss and grief in these early years through hope for the future and a perceived opportunity to become better people. Similarly, for the interpreted experience of parents whose children were now adults with 22q11DS, stigma remained a constant distress, and feelings of guilt, loss and grief persisted throughout the years. Progressively, stigma undermined independence, friendships, and instinctual judgement. Ill-informed hierarchical structures experienced as layers of obstruction and ignorance pragmatically replaced hope and triggered angry advocacy for their child, which was used proficiently in educational, health and societal contexts. In time, looking backwards, they came to value their unique accomplishments collected on their journey with 22q11DS, and in turn, consciously valued authentic ‘self’. Psychological growth was viewed as part of the journey that juxtaposed ongoing distress. It was identified through a metamorphosis of empathy, humility, gratitude, and pride. This thesis provides a unique contribution to the literature by delineating factors that contribute to psychological growth in parents who have a child with a developmental disability. Further, the under-explored journey of these participant parents who have a child with 22q11DS is uncovered, highlighting both negative and positive psychological outcomes. In conclusion, this thesis highlights a number of areas for further investigation and intervention. It demonstrates: a) the need for clarity in positive psychological research; b) that positive psychological outcomes are realistic for parents whose children have a developmental disability and should not be neglected; c) that hierarchical and medical frameworks often poorly support the long-term biopsychosocial needs of families living with lesser known developmental disabilities; and d) healthcare professionals are well-placed to promote positive psychological outcomes