Upcoming Events!
We provide services and support to persons with spina bifida and hydrocephalus and to their families, caregivers, medical and educational professionals. Our objective as a volunteer association is to act as a resource to individuals and families by determining needs for and providing physical and emotional support, information on legal, educational, financial and vocational opportunities.
Her Heart Matters: Uncovering the Cardiac Pain Experiences of Women with Disabilities through Patient Journal Mapping
Women with physical disabilities have 6.6 times higher chance of developing heart disease and 5.9 times higher chance of having cardiac pain compared to women without disabilities.
We are partnering with the Network of Women with Disabilities (NOW), the Canadian Council of Disabilities (CCD) and the DisAbled Women's Network (DAWN) of Canada to learn how to improve decision-making, access and quality of care for women who have disabilities and cardiac pain through patient journey mapping.
We would like to recruit 10-16 English-speaking women over 40 years of age living with a mobility disability (e.g., paraplegia, quadriplegia, osteoarthritis, etc.) and cardiac pain/cardiac symptoms (e.g., shortness of breath). Women will be eligible if they respond ‘yes, sometimes’ or ‘yes, often’ to any of the following three questions: ‘Does a long-term physical condition or health problem, reduce the amount or the kind of activity you can do’ (Q1), ‘at home?’ (Q2) ‘at work?, and (Q3) ‘in other activities (e.g., transportation, leisure)?’ We will ask potential participants to have a 10-20-minute telephone call with us where we will explain our study and project and then we will ask screening questions. The next step will involve an individual interview to discuss your experiences, either face-to-face or by telephone or using the internet. Patterns and connections discovered in the interviews will inform the creation of storyboards/patient journey maps. If you choose, you can participate in a discussion group with other women and health care providers. You will have a chance to review and comment on the storyboards/patient journey maps in the discussion group.
We will provide a lay summary about the study and its findings to all those who participated and indicated that they wished to receive a copy. Travel costs will be reimbursed if you live near Toronto and participants will receive a $25 honorarium for participating in an individual interview or a discussion group. If women participate in both they will receive $50.
If interested please contact Monica Parry at monica.parry@utoronto.ca or 416-946-3561
KITE is the research arm of Toronto Rehabilitation Institute, they are conducting a survey on accessibility in Canada. The purpose of the study is to learn about the main barriers to accessibility that persons with a disability, older adults (65 years old or older) who do not have a disability, and caregivers for persons with a disability encounter in Canada.
They want to find out:
- What are the main barriers to accessibility that individuals in Canada encounter?
- How do these barriers affect quality of life?
- Are the barriers identified in this survey currently being addressed by existing standards, legislation, and guidelines on accessibility in Canada?
Condolences to Bonnie Hildebaugh & Family
Spina Bifida & Hydrocephalus Association would like to send our condolences to Bonnie Hildebaugh and family on the passing of Ron. Ron was the organizer for the SB Hope Classic and a board member of the Spina Bifida & Hydrocephalus Association.
He will be sorely missed.
