Research study: The Perspective and Experiences of Families Raising a Child with Williams Syndrome

Rebecca Bobin

Research Assistant
La Trobe University
Developmental Neuromotor Cognition Lab

Rebecca Bobin is a Master of Clinical Psychology candidate and provisional psychologist within the Australian Catholic University. Rebecca completed her BPsych (Hons) research project under the supervision of Dr. Hocking and her research interests include the nature and prevalence of anxiety in both typical and atypical development. Rebecca is a Research Assistant within the DNCLab and has research experience working with typically developing children and individuals with Williams Syndrome.

I had the privilege of meeting 15 families of persons with Williams Syndrome in 2015 while writing my Honours thesis. In spending time in their homes and chatting with them, I felt I was seeing something quite special about the quality of relationships I was observing. Reviewing the literature, I found that there is research documenting the challenges of raising a child with a neurodevelopmental disorder, but very little investigating the positive aspects. I believe this is a useful exercise for two reasons. Firstly, it may be helpful to families starting out on their journey, to recognize the positive dimensions of raising a child with a Williams Syndrome in addition to the hardships. Secondly, understanding the positive as well as the negative impacts of raising a child with a disability could lead to a more balanced view of families and disability in general.

This study aims to explore what opportunities and rewards (personal growth, resilience, appreciation, support) are experienced by having a family member with Williams Syndrome and what impact having a family member with Williams Syndrome had on the lives of family members (positive and negative). Importantly, the study hopes to capture the perspective of parents, grandparents and siblings of an individual with Williams Syndrome. Family members are encouraged to share stories, anecdotes and perspectives via an online questionnaire. It is anticipated responding to the questions will require about 30 minutes. These surveys are anonymous, and participants aged 12-18 will be assisted to provide parental consent.

Family members who are interested in participating can email me (Rebecca Bobin) at rebecca.bobin@myacu.edu.au, download the Participant Information Statement and begin the survey.