Validation of Family Needs for Pediatric Rehabilitation (FNQ-PR)

Background

The lack of tools to assess the needs of families in pediatric rehabilitation hospitals has made it difficult for clinicians to fully understand what is important to clients and families. Clients and families may not know how to effectively articulate their diversity of needs and issues (i.e., “you don’t know what you don’t know”), and this can result in critical communication issues between the clinician and the client and family. The Family Needs Questionnaire for Pediatric Rehabilitation (FNQ-PR) was created at Holland Bloorview as a way for parents/caregivers to tell their health care providers about their needs and the extent to which these needs have been met within the health and community systems.

Objective

To evaluate the reliability and construct validity of the FNQ-PR.

Approach

Parents/caregivers across various in-patient and out-patient clinical programs within Holland Bloorview will complete the FNQ-PR twice within a two week span. Their questionnaire responses will be compared to determine the reliability of the measure. They will also complete two other validated measures: the Family Impact Scale (IFS) and the Measure of Processes of Care (MPOC-20). We will evaluate whether the FNQ-PR scores align with the scores of the additional measures, as hypothesized, to determine its validity.

Impact

The results of the study will be used to inform and improve the way clinicians assess and recognize parent/caregiver needs with the hope that they will be better able to personalize pathways for families of kids with disabilities.

Funding

This project was funded by the Centres for Leadership and the generous support of donors and Holland Bloorview Foundation, as well as Dr. Virginia Wright’s Holland Bloorview Kid's Hospital Foundation Chair in Paediatric Rehabilitation.

Principal Investigators

Caron Gan, Co-Principal Investigator

Virginia Wright, Co-Principal Investigator

Research Team

Barb Fishbein-Germon, Project Clinical Champion

Pam Green, Project Clinical Champion

Jean Hammond, Family Partnership Specialist

Dilshad Kassam-Lallani, Project Clinical Champion

Gloria Lee, Research Manager

Louise Rudden, Project Clinical Champion

Dagmara Urbanowickz, Project Clinical Champion