How to Talk About Bladder Exstrophy – Free Webinar Recording
While advances have been made in surgical approaches to the management of exstrophy, less is known about the psychosocial development and adjustment particularly as children and their family’s progress to childhood and adolescence. One of key issues that many parents struggle with is how to talk to others about this condition.
- What happens when my child is invited to a birthday party or sleep over?
- What does my child’s coach need to know about exstrophy?
- How do I help my child handle awkward situations liking changing for gym class or dealing with accidents in school?
Emily Haddad and Barbara Neilson share ideas and best practices on how to have these conversations with family, friends, and your medical team in this recording of a live webinar with the A-BE-C community recorded on February 26, 2015.
A tip sheet with five key points from the webinar is available to view and download.Tip Sheet
Barbara Neilson, MSW, Res. Dip. S.W., RSW is now in her 27th year of providing clinical social work services to the Division of Urology at Sick Kids in Toronto Ontario. Her practice includes patients and families with DSDs (disorders of sex development) including Bladder Exstrophy, Cloacal Exstrophy and Epispadias. She is involved with Accord Alliance and participated in the development of clinical guidelines for practionners and families for the care of DSD patients. She participates in interprofessional practice, education and research relating to her areas of expertise. She has led on line support groups for Exstrophy patients, and families including adults, for the last 21 years. She promotes camp and peer group activities for patients and attends the Canadian Ostomy camp with many bladder exstrophy patients on a yearly basis . She is a passionate believer in family centered care, and is a strong advocate for her patients and families, especially those with conditions that are “below the waist and under the radar.”
Emily Haddad is a licensed clinical social worker in the Department of Urology at University of Oklahoma Health Sciences Center. Emily trained with Barbara Neilson, clinical social worker at Sick Kids Hospital in Toronto, Ontario. She joined the OU team in September 2014 as a patient advocate, behavioral health consultant, and resource specialist. She can be seen to her patients as a “health coach” who promotes the individual’s self confidence in their own medical management. Emily went to social work school to specifically work on behalf of urology patients and to partner with their doctors to provide holistic and comprehensive care. She enjoys playing soccer, piano, and with her dog Bunji Jump.