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Enhancing Care for Young People with Muscular Dystrophy: Addressing the Human Dimensions of Progressive Illness Experience

Enhancing Compassionate Care

Summary

This project aims to explore and enhance compassionate care for young people with muscular dystrophy (MD) and their families.  It does so through a collaborative research study that engages professionals in a process of reflexivity towards understanding clinical care as a process that opens and closes opportunities to attend to the human dimensions of living with MD.  This will be achieved through observations of clinical care integrated with 3 structured dialogues with interdisciplinary staff to explore practices and effect meaningful change. The outcome will take the form of collaboratively developed recommendations for the care of young people with MD.

Researcher(s)

Barbara Gibson, PhD, MSc, BMR(PT), Laura McAdam, MSc, MD, FRCP(C),Jenny Setchell, Thomas Abrams

Who can participate

Children and their families with a diagnosis of Duchenne’s (DMD), Becker’s (BMD) or Intermediate (IMD) muscular dystrophy who are between the ages of 5 to 20 years of age and have a scheduled clinic visit prior to July 31,2016.  

What's Involved

An observer will stay in the room with families throughout their clinic visit and take notes on their interactions with clinicians. The observer may ask families a few questions about their experience. 

Deadline

Recruitment for the study will continue until July 31, 2016.

 

Interested in participating

If you are interested in participating in this study or have additional questions, please contact the study coordinator, Bhavnita Mistry, at 416-425-6220 ext.3403 or bhavnita.mistry@utoronto.ca with your interest, and she will get back to you shortly. Contacting us does not obligate you to participate in the study. 

Funding Agency

AMS Phoenix Project



Learn more about this study




Please do not share any confidential information. The research team will contact you by phone or email to provide more details about this study.