Research

Recent DSRF Research

Below are updates on recent research projects with which the Down Syndrome Research Foundation has been involved.

BC Down Syndrome Survey

On June 5, 2015, DSRF and the Children's Sleep Network hosted a webinar in which we released the results of the BC Down Syndrome Survey conducted in the spring of 2015. Click here to view the recording. Click here to download the presentation slides.

Based on the results of the survey above, DSRF and a number of partner organizations are developing a Down Syndrome Medical Care mobile application, with three primary areas of focus: recording daytime and nighttime behaviours, tracking medications, supplements and nutrition, and integrating reminder and feedback notifications.

We need your help! Your input and suggestions can help shape the development of this app, ensuring the creation of a tool that meets your needs and those of other families of individuals with Down syndrome. Click here to join the Facebook discussion group and have your say.

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The Costs of Caring Survey

Title: Development and pilot testing of a tool to calculate parental and societal costs of raising a child with intellectual disability.

Authors:

Dallas Genereaux, BSc, Department of Medical Genetics, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada, 604-875-2000 ext. 5622, dgenereaux@cfri.ca

Nick Bansback, PhD, School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, Canada, 604-827-5453, nick.bansback@ubc.ca

Corresponding Author: Patricia Birch, MSc RN, Department of Medical Genetics, Faculty of Medicine, University of British Columbia, Vancouver, British Columbia, Canada, 604-875-2000 ext. 5622, patricia.birch@ubc.ca

Acknowledgements:

We would like to thank the Down Syndrome Research Foundation for their help in distributing the survey through their networks, the pilot study families who took the time to complete the survey and the individuals who reviewed the survey prior to its distribution.

Funding and grant-awarding bodies:

This work was supported by the Rare Disease Foundation Microgrant Program under Grant #2013-34

Extended Abstract:

There is lack of evidence in Canada surrounding the costs to parents and society to raise a child with intellectual disability. Knowledge of these costs is necessary to ensure appropriate governmental support to families and to assess the financial impact of new diagnostic tests and treatments. This is the first instrument developed to capture such costs in Canada.

We adapted two paper-based cost diaries into an online retrospective survey and evaluated it using a small pilot study of individuals with Down syndrome. Survey responses were analysed and costs appeared concordant with those reported in other countries. The survey documented care time required, impact on employment, and other expenses. Parents completed the survey with apparent ease, giving answers requiring little clarification; they used comment fields to add data that elaborated on both financial and emotional costs. Minor modifications were made as a result of this pilot, and the survey is now available for wider use.

In total, 8 participants from across the province of British Columbia completed the adult version of the survey and 29 completed the child version. These were 11 pre-school children and 18 school age children. The adult surveys were analyzed for usability and the child surveys were analyzed for costs.

There is large variance in overall costs among families. Median values for yearly total parental costs for pre-school and school age children costs are $35,409 and $43,349 respectively. The largest two contributors to these costs were income loss through parents quitting jobs, and from caregiving time required. The weekly caregiving time averaged 31 hours. As typically developing children enter the school system, many previously unemployed or under-employed parents are once again able to return to work. This does not appear to be the case in our small sample of parents with Down syndrome. From our limited discussion with these parents, this may reflect the continuing need for care in older children. Some participants stated that holding a job would be impossible given the irregularity of their child’s needs; finding a job with the needed amount of flexibility is difficult. The survey was able to capture these data and to provide some explanation for this finding:

Median societal costs for pre-school and school age children are $8,559 and $39,133 respectively. The higher cost for school aged children reflects the educational supplement paid to schools, which is the largest contributor to societal costs. Other examples of societal costs include government benefits paid directly to parents, respite care for older children, and transportation costs to medical appointments.

Costing surveys such as this cannot calculate the value of the psychosocial impacts of raising a child with a disability. Whereas the survey documented parents’ total hours spent caregiving, the emotional and energetic toll of caring for a child with extra care needs not only costs parents, but siblings and extended family as well.

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