Using Family Expertise to Guide Inpatient Care for Children with Medical Complexity
Summary
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.
Eligibility
Eligible gender: Male, Female, Transgender, Other
Eligible ages: 14 to 99
Accepts healthy participants: Yes
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
Participate
Fill out the following form if you want to participate in this research
Collection of personal information
Your personal information is collected under
the authority of section 33(c) of the Freedom of Information and Protection of Privacy Act. If
you have any questions about the collection or use of this information, please visit our
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Additional information
Contact information
Dr. Tammie Dewan
Principal investigator:
Tammie Dewan
Clinical trial:
No
REB-ID:
REB23-1305