What is the Family Needs Questionnaire – Pediatric Rehabilitation Version (FNQ-PR)?

The Family Needs Questionnaire – Pediatric Rehabilitation Version (FNQ-PR), which consists of 39 items, provides clinicians with a tool for assessing the degree to which the unique needs of families have been met across six categories: Health Information, Emotional Support, Family/Practical Support, Involvement with Care, Professional Support, and Community Support. The FNQ-PR was developed for families of children and youth ages 2 to 18 years who have a neuromotor (e.g., cerebral palsy, developmental delay, spina bifida), neurodevelopmental (autism, developmental delay) or orthopaedic condition (e.g., limb lengthening, fracture, spinal surgery). It may be suitable for families of children with a new injury/condition such as spinal cord injury, amputation or Guillain-Barre syndrome where needs could be specific to the phases of recovery and adaptation to a new normal. As well it may be helpful with families whose child has a deteriorating condition such as muscular dystrophy.

How was the Family Needs Questionnaire – Pediatric Rehabilitation Version (FNQ-PR) developed?

In response to the identified clinical and research gap around the needs of families of children and adolescents with disabilities, the development and validation of the Family Needs Questionnaire – Pediatric Rehabilitation Version [FNQ-PR] was conducted across a two-phase Research Ethics Board approved study which was carried out from 2017 to 2022.

In phase I, we adapted our Family Needs Questionnaire – Pediatric (FNQ-P) (Gan et al., 2019) to allow it to be used more broadly in pediatric rehabilitation. The original FNQ-P had been designed for use with caregivers of children with a brain injury to provide information on family needs at varying post-injury time intervals. The FNQ-P is increasingly used both clinically and in research internationally. It has been officially translated in four languages (Swedish, Spanish, Norwegian and Chinese).

Using a modified Delphi process involving nine clinicians and 12 caregivers, the FNQ-P was adapted to become the Family Needs Questionnaire – Pediatric Rehabilitation Version (FNQ-PR) so that it can be used with families of children and adolescents with a disability who are receiving rehabilitation services The item content for the FNQ-PR was developed over three rounds of anonymous voting and revisions.

In phase II of our research, we established the test-retest reliability within a single centre study at Holland Bloorview Kids Rehabilitation Hospital in Toronto where the FNQ-PR was developed.

For further details regarding the development of the FNQ-PR and results from our validation study (Gan et al., 2023), you can view the open access publication at http://doi.org/10.1111/cch.13163

References:

Gan C, Wright FV. (2019). Development of the Family Needs Questionnaire – Pediatric version (FNQ-P) – Phase I. Brain Injury. 33: 623-632.

Gan C, van’t Hooft I, Brookes N, Prasauskiene A, Wales L, Wright FV. (2020) First Stage International Validation of the Pediatric Family Needs Questionnaire (FNQ-P). Brain Injury. 34(8):1074-1083

Gan C, Chernodon K, Wright FV (2023). Development and evaluation of the Family Needs Questionnaire for pediatric rehabilitation (FNQ-PR). Child Care Health & Development  Early on line Sept 19, 2023.pp 1-12. DOI: 10.1111/cch.13163

How is the Family Needs Questionnaire – Pediatric Rehabilitation Version (FNQ-PR) administered?

Detailed instructions for completing the questionnaire are provided at the start of the FNQ-PR. For each item, the family member respondent is asked to indicate whether each need has been ‘not at all met’, ‘met very little’, ‘somewhat met’, ‘met a lot’, or ‘completely met’ by circling the corresponding number below. For needs that are not applicable at the time of administration, the respondent checks the ‘not needed’ box.

After completion of the FNQ-PR, the clinician should review the form with the respondent(s) and request completion of any omitted items.

Detailed administration guidelines are in the FNQ-PR manual, available for free download through Flintbox, a third-party site.

To access the FNQ-PR, visit Flintbox.

You will be required to set up a Flintbox account (free of charge) and provide your email address. Flintbox will only use your email to confirm your download.

How are the Family Needs Questionnaire – Pediatric Rehabilitation Version (FNQ-PR) scores used and reported?

Detailed FNQ-PR scoring, and interpretation guidelines are in the FNQ-PR manual, available for free download through Flintbox, a third-party site. A scoring template is also available for free download through Flintbox.

To access the FNQ-PR, visit Flintbox.

You will be required to set up a Flintbox account (free of charge) and provide your email address. Flintbox will only use your email to confirm your download.

What do the Family Needs Questionnaire – Pediatric Rehabilitation Version (FNQ-PR) items look like?

See document with item examples

Translated versions of the Family Needs Questionnaire – Pediatric Version (FNQ-PR)

Translated versions of FNQ-PR are in the process of being developed as interest comes forward. Please let us know if you would like more information on the translation process for use in your country. 

Contact Us: For enquires about FNQ-PR licensing, contracts, and translation, please contact

Sharon Wong, Director of Commercialization

416-425-6220 Ext. 6107

Email: sharon.wong@hollandbloorview.ca