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Perspectives: Cross Sectional Comparison of the Perceptions of Caregivers of Children with Disabilities Regarding Their Own Wellbeing and Availability of Support

Principal Investigator:
Mary
O'Connor Leppert

Our plan is to investigate emotional and physical wellbeing and preparedness for the future among three different cohorts of caregivers:

  1. Those with children with intellectual disability
  2. Those with children with cerebral palsy
  3. Those with children with ADHD (control group)
  1. We will examine how these factors differ between parents/caregivers of the different cohorts of children.
  2. We will examine how these factors change over time within the same cohort groups, looking both at caregivers of an early-school aged cohort compared to caregivers of a mid-late adolescent cohort.

We would like to survey parents/caregivers with the Family Quality of Life Survey which evaluates the following domains:

  • The health of the family
  • Financial well-being
  • Family relationships
  • Support from others
  • Support from disability related services
  • Influence and values
  • Careers and preparing for careers
  • Leisure and recreation
  • Community Interaction
  • Long term legal planning
  • Physical well-being

Additionally, we will have an addendum to the survey to explore:

  • Preparedness for the future
  • Adequacy of home/transport equipment
  • Type and amount of community support
  • Physical and mental health of the parent/caregiver

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