Could I, should I? Parenting aspirations and personal considerations of five young women with 22q11.2 deletion syndrome
Miss Lisa Phillips is a Clinical Psychologist who did her Masters of Clinical Psychology at the University of Newcastle in Australia with Dr Linda Campbell and Dr Martin Johnson from the School of Psychology. Recently her Masters research was published in collaboration with Miss Jane Goodwin. Read a brief summary here and if you want to read more, the article was recently made available online through Journal of Intellectual and Developmental Disability, go to http://bit.ly/2egsx0G
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.
The 22q11.2 deletion syndrome (22q11DS; also known as Velo-cardio-facial syndrome) is one of the most common genetic syndromes and occurs in at least 1 in 4,000 births although a recent study that the syndrome may be as common as 1 in 992 live births. The syndrome is associated with a range of physical problems including cardiac and palatal anomalies, low muscle tone and poor immune system. The syndrome is also associated with intellectual disabilities or learning problems and mental health problems. However, there is a large variability between different people with the syndrome which means that some people have very mild symptoms and others much more severe problems.
In this study we interviewed five women with both 22q11.2 deletion syndrome (22q11DS) and intellectual disability. All the interviews were transcribed verbatim and their subjective interpretations were then analysed using a qualitative methodology known as Interpretative Phenomenological Analysis (IPA). IPA offer insights into how a given person, in a given context, makes sense of a given phenomenon, so in this instance we were wondering how young women with 22q11DS made sense of their ideas of hope for the future, relationships and parenthood.
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.