Development of the family needs questionnaire – pediatric version [FNQ-P] – phase I

ABSTRACT

Objective: To adapt the well-validated 37-item adult Family Needs Questionnaire to make it suitable for families of children and youth with acquired brain injury (ABI).

Methods: Measurement construction employed a modified Delphi technique to identify the most relevant content items for the pediatric Family Needs Questionnaire (FNQ-P). The Delphi process involved a panel of 11 ABI-team clinicians and seven family caregivers of children/youth with an ABI and four rounds of anonymous voting on each item’s importance. Qualitative responses related to each item’s review were incorporated into item content and wording decisions. Cognitive interviews were conducted with three parents after the Delphi to evaluate face and content validity.

Results: The outcome of the final Delphi round was a set of 40 items within the original FNQ’s original six categories: Health Information (n = 10), Emotional Support (n = 6), Instrumental Support (n = 4), Professional Support (n = 6), Community Support (n = 6), and Involvement with Care (n = 8). Cognitive interviews resulted in changes to formatting, rating scale, and item wording, and culminated in overall consensus about the FNQ-P’s face/content validity.

Conclusions: Use of the Delphi process with family and clinical partners resulted in content-endorsed pediatric FNQ that is ready for validation work prior to transfer to clinical practice.

KEYWORDS:

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

Acknowledgments

The authors wish to acknowledge the financial support of the Centre for Leadership in Acquired Brain Injury at [Holland Bloorview Kids Rehabilitation Hospital]. In addition, we would like to acknowledge the contributions of the following. Without them, this research could not have been conducted: the invaluable contributions of [Sarah Sheffe] (Research Coordinator), [Kathy Gravel] (Clinician Collaborator), [Sharon St. Jean] (Family Leader), the participant families, and members of the expert panel. [Virginia Wright] holds the Chair in [Holland Bloorview Kids Rehabilitation Hospital Chair] in Paediatric Rehabilitation (2012-2022)

Declaration of interest statement

The authors report no conflicts of interest. The authors alone are responsible for the content and writing of the paper.

Additional information

Funding

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