If you would like to learn more about any of our projects and how you can participate, please contact Revi Bonder at firstname.lastname@example.org
1. Nobody is talking with me about sex! An exploration of how healthcare providers can have positive sex-related conversations with youth with disabilities
This project brings together young adults with disabilities, parents of children with disabilities, and healthcare providers to explore how to have conversations about sex and sexuality in healthcare. Through a series of design workshops, we are creating new resources for healthcare providers to use when having conversations with youth with disabilities about sexuality. This has been funded through the Accessibility Directorate of Ontario.
2. Connect to create: Mobilizing knowledge of sexuality in children and young people with disabilities to create capacity across Canada
The overall goal of this research project is to build capacity within Canada around sexuality in children and young people with disabilities. Funded by the Social Sciences and Humanities Research Council, this project has two phases:
Phase one involves a virtual Connection Day, Let's Talk Disability and Sex: A virtual connection day to discuss sexuality and young people with disabilities, which will gather Canadian researchers, health care professionals, young adults with lived experience, and parents of children with disabilities to share the current state of knowledge on sexuality and childhood disability. The goals of the day include identifying research gaps, distilling key messages, and identifying areas where current knowledge is available to create educational aids.
Phase two of this project will involve a Creation Day, creating accessible educational aids to facilitate discussion of sexuality and disability in and with children and young people based upon the priorities set at the Connection Day.
3. Families’ experiences of weight management and wellness in children with disabilities
Children with disabilities often experience challenges accessing healthy living programs and/or weight management services. We are interviewing children with spina bifida, children with autism, and their parents to explore what they need from services that would help support their healthy lifestyles. This study is supported by a Team Grant in Bariatric Care (Team to Address Bariatric Care in Canadian Children – Team ABC3) from the Canadian Institutes of Health Research, Institute of Nutrition, Metabolism and Diabetes.
4. What are the mental health and wellness needs of young adults with spina bifida? A stakeholder engagement workshop
After conducting a scoping literature review of how healthcare professionals can best discuss mental health and wellness in children and people with physical disabilities, we are now conducting a survey to gather parental input on the findings of the scoping review and identify where new knowledge needs to be generated. These first steps will inform guiding principles for clinical practice and guide additional research activities. Support was provided by Centres for Leadership for Child Development, with support from Holland Bloorview Kids Rehabilitation Hospital Foundation.
5. Exploring the extent and nature of disordered eating in adolescents and young adults with spina bifida and hydrocephalus across Canada
Our research team is conducting a study to explore the extent and nature of disordered eating in children and young people with spina bifida and hydrocephalus across Canada.
In the first phase of this study, we are asking healthcare professionals who provide care to adolescents and young adults with spina bifida and hydrocephalus across Canada to complete an online survey reporting their experiences of identifying and providing care to those with disordered eating behaviours. Later phases include a survey of adolescents and young adults with spina bifida, and qualitative interviews. Support for this study comes from the Spina Bifida and Hydrocephalus Association of Canada.
6. Integrating wellness goals into personalized care pathways for children and youth with disabilities
This study previously explored what wellness means to children and youth with disabilities, what goals are important to them, and how their needs are addressed in rehabilitative settings. World café- style meetings identified wellness priorities from the perspectives of parents, healthcare professionals, and young people with disabilities.
Our current work integrates these findings into the Toolkit for Wellness Promotion, which will include information and resources for young people with disabilities, their families, and health care and community service providers. Special Olympics Canada and Special Olympics Ontario have been key stakeholders in this work.
7. Putting positive weight-related conversations into practice: The pilot implementation of a knowledge translation casebook
This project aims to understand what supports and resources health care professionals need in order to use the Weight-Related Conversation Casebook as part of their clinical practice. In this pilot implementation project, healthcare professionals from nursing, medicine, occupational therapy and physiotherapy are providing insights into how the Casebook can be integrated into clinical care with children with disabilities and families. This project will also help guide a broader implementation of the Casebook across other clinical settings. Funding was provided by Centres for Leadership, with support from Holland Bloorview Kids Rehabilitation Hospital Foundation.
8. Having body-positive conversations with children: A parent guide for confident conversations
Parents often do not have the knowledge and confidence to discuss weight and health topics with their children. In addition, disability is rarely represented in existing resources.
We have adopted an integrated knowledge translation approach to create a prototype Knowledge Translation (KT) interactive 'guide' for parents to have positive and supportive conversations about their child's weight, health, body image and body diversity.