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Using Family Expertise to Guide Inpatient Care for Children with Medical Complexity

Pediatrics

This study is about how to improve care for children when admitted to hospital. We are recruiting patients and caregivers for research interviews. The study focuses on children with medical complexity (CMC). Children with medical complexity have:
- complex conditions
- chronic conditions
- high healthcare use
- high caregiving needs and
- physical and/or cognitive disabilities.

Hospitalization for CMC and their families can be very stressful. These experiences might also contribute to depression, anxiety, and other mental health concerns. Research shows that parents of CMC rate the quality of their child’s hospital care lower than other patient/caregiver groups.

This national study aims to design meaningful, comprehensive, and effective health services for CMC in two phases: a Canada-wide survey and a series of focus groups at the Alberta Children's Hospital.

Previous research results on CMC caregiver and family experiences shows that some research gaps exist. This study focuses on obtaining feedback from groups who are not well represented. Researchers hope to gather feedback from all kinds of stakeholders.

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Participation Requirements

  • Sex:

    Male, Female, Intersex

  • Eligible Ages:

    14 and up

Participation Criteria

Inclusion Criteria:
For Phase 1, we welcome participants who are part of the CMC community - patients/children with medical complexity or caregivers of CMC.
For Phase 2, we welcome the following:
1. Patients/children with medical complexity or caregivers of CMC
2. 14+ years of age (and have the ability to participate independently)
3. Have experienced hospitalization
Exclusion Criteria:
Participants are not eligible if they are:
- Under 14 years old
- Not part of the CMC community - either a patient or a caregiver

Study Location

University of Calgary
University of Calgary
Calgary, Alberta
Canada

Contact Study Team

Study Sponsored By
University of Calgary
Participants Required
More Information
Study ID: REB23-1305