Research findings: The Perspective and Experience of Families Raising a Child with Williams Syndrome

Feb 8, 2018 | ,

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.

In 2017, Rebecca approached our group for volunteers to participate in qualitative studies for her thesis on The Perspective and Experience of Families Raising a Child with Williams Syndrome.  Rebecca has completed her thesis and has kindly shared her findings with us.

The thesis is a lengthy and highly worthwhile read and includes many anonymous quotes from family members in the group.

Thank you Rebecca for generously sharing your findings with us. We trust this will help to give greater understanding to families and the wider community about the relational and experiential aspects of Williams Syndrome.

Read the thesis

“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 were encouraged to share stories, anecdotes and perspectives via an online questionnaire.”

Bunnings fundraiser day SUCCESS!

Oct 10, 2017 | ,

The skies were blue. The carpark was full. The sausages were sizzling and flying into the hands of happy patrons.  We could not have asked for a better Saturday in October! It was a massive team effort from everyone involved and every aspect of the day exceeded all our expectations! After all our expenses were paid, we have raised $1662.75, selling over 700 sausages, cakes and drinks. Thank you Bunnings!

We really want to thank Justine & Erin for all their preparations and for running the whole day. Ruby was our faithful money collector all afternoon, assisted by Jem & Evie – go kids!  Thanks Robyn, our faithful Treasurer, for counting every single coin at the end of the day (that’s a lot of coins!) The cakes and slices were delish (from what I sampled!) so thank you to everyone who baked and contributed – special shout out to Emily for the tonne of brownies and other goodies! Thank you to all our sausages and onion chefs, assemblers, helpers and to all the parents and grandparents helping at the cake stall and in the marquee.

We are thrilled about the funds we could raise, but even more impressive to me was the support of our community, everyone coming together and pitching in and creating such a warm and friendly atmosphere once again. What a wonderful group we belong to!

Evan & Robyn, on behalf of the WSFSG Vic committee

  
   

Brodie – The Music Student

Oct 4, 2017 | ,

Brodie is a young man in our community who spent some time attending two different day programs but found them unfulfilling and mundane. A discussion with his mum was the catalyst for change and Brodie enrolled in the Certificate Three Music Course at Box Hill TAFE. Brodie studies electronic music composition and performance and discovered a whole new world at college. He has gained the respect and admiration of his peers, both staff and students, and could not be happier as he embarks on his new pathway.

Source: 19 Stories of Social Inclusion by Belonging Matters and Melbourne University

Bandmates Victoria

Jun 5, 2017 |

Bandmates Victoria matches young people over 18 with disability and /or mental health issues with a Volunteer to see live music of their choice in local venues. This program has attracted keen interest across Melbourne and further afield.

Volunteers will receive information and training to support their involvement in Bandmates Victoria. Specialist industry development training for venue management, staff and security will also be provided to ensure that everyone has an inclusive and enjoyable experience.

The Bandmates Victoria program partners include Arts Access Victoria, Music Victoria and the Cities of Darebin, Melbourne, Moreland, Port Phillip and Yarra and has received a VicHealth Bright Futures Challenge grant.

Seeing live music is a rite of passage for all young people and Bandmates Victoria will make this happen for young people with disability and /or mental health issues.

Visit the Maribyrnong Council website for more information and online registration for becoming a Volunteer or Bandmate or contact on 0437 161 061 or bandmatesvic@maribyrnong.vic.gov.au.

 

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

Apr 28, 2017 |

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.

Start survey