Establishing relationships and considering parenthood can present both challenges and joys for any young adult. However, young people with an intellectual disability (ID) can encounter extra obstacles on the road to achieving their aspirations. This phenomenological study explores the perceptions, hopes, and dreams of relationships and parenting of women with a genetic intellectual disability, 22q11.2 deletion syndrome.
After significant analysis four main themes emerged from the interviews, that is patterns in the data that was shared between the participants: (a) challenges and acceptance of having 22q11DS, (b) desire for social acceptance and normality, (c) welcoming of emotional and practical support, and (d) individuation. The themes describe the discordance between the challenges and acceptance of having a genetic disorder, the need to be “normal,” the importance and appreciation of social support, and the women’s aspirations for independence.
Overall, the conclusions from the study highlight that these young women with 22q11DS approaches their adulthood with a sense of optimism and personal competence yet recognise their unique challenges. Parental support is valued despite the need for independence. The findings provide insight into the lived experience of women with 22q11DS.
Citation: Phillips, L., Goodwin, J., Johnson, M. P., & Campbell, L. E. (2016). Could I, should I? Parenting aspirations and personal considerations of five young women with 22q11. 2 deletion syndrome. Journal of Intellectual & Developmental Disability, 1-11.