Enhancing the Human Dimensions of Clinical Care for Young People with Muscular Dystrophy

Enhancing Compassionate Care


Summary

The proposed project aims to improve the care processes for young people with muscular dystrophy (MD) and their families. Through pilot work, we have developed an innovative methodology that engages multidisciplinary clinical team members to collectively examine and improve how the ‘human’ dimensions of living with MD are addressed within clinical care. ‘Human’ refers to the emotional, social, and moral dimensions of illness co-existing with the medical and functional dimensions.  To date we have developed a set of actionable recommendations for change in the local clinic. The proposed study aims to extend this work to advance the development of transferable skills and recommendations for MD clinical care for application across Ontario and Canada.  This is a multi-site, multi-method study. The work will be informed by the perspectives of children and families, and will partner with clinicians to produce, test, and refine recommendations. 


Researcher(s)

Barbara Gibson, PhD, MSc, BMR(PT)Laura McAdam, MSc, MD, FRCP(C),Jenny Setchell, Thomas Abrams, Patricia Thille. Hugh McMillan


Who can participate

Families and young people with a diagnosis of BMD, DMD, or IMD.

Clinicians working in the neuromuscular clinic.


What's Involved

A research coordinator will observe one of your regularly scheduled clinic appointments. She will take notes of what she observes. She will not interrupt the appointment and you can ask her to leave at any time. She will only come back when it is okay. Once the appointment is done, she will leave the room.

There are other options for the study. You can choose some, all or none of the options:

  • Participate in a one-on-one face-to-face interview to talk about your clinic experiences
  • We will request to review your one-page brief plan that you receive at the end of your appointment
  • We will request to review the letter that is sent to you after your appointment
  • We will request to review your electronic chart about your observed appointment
  • We will invite you to fill in a diary about your own experiences in clinic

Deadline

Recruitment will continue to December 2018


Interested in participating

If you are interested in participating in this study or have additional questions, please contact Bhavnita Mistry, research coordinator, at bmistry@hollandbloorview.ca or 416-425-6220 x3403 with your interest, and she will get back to you shortly. Contacting us does not obligate you or your child to participate in the study.


Funding Agency

Academic Health Science Centre (AHSC) Alternate Funding Plan (AFP) Innovation Fund

Learn more about this study