Caregiver Quality of Life Survey

In an effort to understand the needs and challenges that parents and caregivers face in raising a child/family member with 1p36 Deletion Syndrome, we are conducting our first ever Caregiver Quality of Life Survey.  The information you provide in this survey will help 1p36 Deletion Support & Awareness better serve our community by identifying needs, determining resources, and providing support. Your responses to these questions will be anonymous and will be combined with other members of our community.  The topics we will cover include:  Basic demographics, Childcare, Self-care, Support, Planning for the Future, Family Relations, Social Life, Work life, Psychological Well Being, and Sharing Resources. It should take between 10-15 minutes to complete this survey.  The survey will only remain open until December 8th, so please take the time now to complete it.  We really value your opinion and experiences.

We are asking all parents and primary caregivers of a person with 1p36 Deletion Syndrome to fill out this survey. We encourage both moms and dads to participate as each person can share a different perspective on how raising a child with 1p36 Deletion Syndrome affects them. To complete the survey, please go to www.surveygizmo.com/s3/1338577/1P36-Family-Quality-of-Life-Survey Please feel free to forward this link to any other 1p36 caregivers who may not know about the survey. 

If you have any question or concerns about the survey please contact board member Tod Oliver at t.oliver@1p36dsa.org.