First stage international validation of the pediatric family needs questionnaire (FNQ-P)

ABSTRACT

Objectives

1. Evaluate reliability and construct validity of the newly-developed Family Needs Questionnaire – Pediatric (FNQ-P), a 40-item measure assessing the extent to which family’s needs are met after a child has an acquired brain injury (ABI). 2. Explore the impact of selected child characteristics on FNQ-P scores.

Research Design: Measurement study

Methods: Parents/caregivers of children with ABI (2–18 years) were recruited across four sites (Canada, Sweden, Lithuania, Australia) for FNQ-P test–retest evaluation. These sites plus a fifth (United Kingdom) completed construct validity evaluation with the Family Burden of Injury Inventory and Strengths and Difficulties Questionnaire. Associations between FNQ-P score and age, injury severity, time post-injury and site were evaluated via stepwise regression.

Results

FNQ-P mean scores (n=61) were 64.1% (SD 22.3) and 58.8% (SD 22.6) on test and retest, respectively. Test–retest reliability was good overall (ICC=0.78, 95% CI 0.65–0.86). There was a weak association between FNQ-P and FBII (r=−0.23, P=0.049, n=71), but no association between FNQ-P and SDQ scores (maximum r=0.16, P>0.15). None of the variables studied predicted FNQ-P scores.

Conclusion

The FNQ-P demonstrated good test–retest reliability. Further validity assessment is recommended. Lack of relationship between FNQ-P and variables studied suggests independence of family needs.

KEYWORDS:

• Family needs
• pediatrics
• children
• acquired brain injury
• reliability

Acknowledgments

The authors wish to acknowledge the financial support of the Centre for Leadership in Acquired Brain Injury at Holland Bloorview Kids Rehabilitation Hospital (Toronto, Canada). In addition, we would like to acknowledge the contributions of our international collaborators: Ingrid van’t Hooft (Astrid Lindgren Children’s Hospital, Karolinska University Hospital, Sweden), Naomi Brookes (Rehab2Kids, Sydney Children’s Hospital, Australia), Audrone Prasauskiene and Laura Ziukiene (Lithuanian University of Health Sciences and affiliated Children's Rehabilitation Hospital, Kaunas, Lithuania), and Carolyn Dunford and Lorna Wales (The Children’s Trust, United Kingdom). Without their generous support, this research could not have been conducted. We also want to acknowledge the invaluable contributions of Sarah Sheffe (Research Coordinator), Kathy Gravel (Clinician Collaborator), Sharon St. Jean (Family Leader), and the participant families across the five countries. Virginia Wright holds the Chair in Holland Bloorview Kids Rehabilitation Hospital Chair in Pediatric Rehabilitation (2012–2022)

Declaration of interest statement

The authors report no conflicts of interest. The FNQ-P that the first and senior authors developed and now have validated is available at no cost to clinicians and researchers internationally via a free registration process on the website at their treatment center. The authors alone are responsible for the content and writing of the paper.

Additional information

Funding

This project was funded with contributions from the Holland Bloorview Kids Rehabilitation Hospital Foundation through the Centre for Leadership in Acquired Brain Injury.