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Research Project Funded in 2014

How is quality of life impacted by vocational experiences and opportunities among males (≥16) with moderate and severe hemophilia throughout the lifecycle?


Claude Bartholomew, RSW
St-Paul’s Hospital (Vancouver)
One year funding. Start: April 30, 2014;  to end March 31, 2015. 

Co-investigators:
Linda Waterhouse, RSW, Hamilton Health Sciences (Ontario)
Shannon Lane, McMaster University (Ontario)
Neale Smith, Vancouver Coastal Health Authority (BC)
Michelle Sims, RSW, Saskatchewan Bleeding Disorder Program (SK)
 

Employment is an important contributor to people's overall health and well-being. But we know that employment is affected by people with hemophilia (PWH). There can be additional factors, beyond the physical effects of the illness itself, which can/has reduced quality of life among PWH. We believe that additional research needs to be completed, in a Canadian context, to understand the experiences and effects of employment throughout the lifecycle among PWH.

Our proposed research will seek to answer this question: How is quality of life among males (16 years) with moderate or severe hemophilia affected by work and vocational experiences over the course of their lives?

The research will be conducted in British Columbia, Manitoba, Ontario, and Saskatchewan. We will use qualitative and quantitative methods. An initial focus group with PWH will help to develop a survey questionnaire that asks about vocational issues of prime interest to PWH at all ages: young adulthood, mid-adulthood/career, and late career/retirement. The questionnaire will be given to patients of hemophilia clinics in each province (estimated total response=180). Finally, focus groups at each site will be held with some survey respondents to further reflect on and better understand the survey findings.