The FNQ-P was developed by Caron Gan (RN, MScN, RP, Advanced Practice Nurse/Family Therapist, Clinical Team Investigator) and Virginia Wright (PT, PhD, Senior Scientist - Professor) and at Holland Bloorview Kids Rehabilitation Hospital with funding from the Centre for Leadership in Acquired Brain Injury and Holland Bloorview Chair in Pediatric Rehabilitation (held by Wright).
In response to the identified clinical and research gap around the needs of families of children and adolescents with acquired brain injury (ABI), development and validation of the Family Needs Questionnaire – Pediatric Version (FNQ-P) was conducted across a three-phase Research Ethics Board approved study which was carried out from 2014 to 2017.
In phase I, we adapted the well-validated adult Family Needs Questionnaire (FNQ-R) (Kreutzer, Serio, & Bergquist, 1994) with permission from the lead author. The original FNQ-R was designed for use with caregivers of adults with a brain injury to provide information on family needs at varying post-injury time intervals. Based on a factor analysis, six factors were identified and labeled as FNQ subscales: Health Information, Emotional Support, Instrumental Support, Professional Support, Community Support Network, and Involvement with Care (Serio, Kreutzer, & Witol, 1997). The FNQ-R in adult rehabilitation programs has been used extensively in research of families after brain injury.
Using a modified Delphi process involving 11 clinicians and seven caregivers, the adult FNQ-R was adapted so that it can be used with families of children and adolescents with ABI. The item content for the pediatric version, Family Needs Questionnaire – Pediatric Version (FNQ-P) was developed over 3 rounds of anonymous voting and revisions.
In phase II of our research, we established the face and content validity of our FNQ-P. In phase III, we established its test-retest reliability within a four centre international validation study involving partners from Astrid Lindgren Children’s Hospital in Sweden, Sydney Children’s Hospital in Australia, and the Children’s Rehabilitation Hospital in Lithuania. FNQ-P test-retest reliability was evaluated via intraclass correlation coefficients (ICCs) (target ICC > 0.80, with lower limit 95%CI > 0.70). The FNQ-P demonstrated good test-retest reliability across the four international sites .
Construct validity testing was conducted across these same four sites and a fifth site, the Children’s Trust for Children with Brain Injury in the United Kingdom. Construct validity was evaluated using Pearson correlation with a target r > 0.70 to indicate moderate to strong association between the FNQ-P and the parent completed Family of Burden of Injury Inventory [FBII; short form] and Strengths and Difficulties Questionnaire [SDQ]. The lack of relationship between FNQ-P score and age, injury severity, or time post-injury suggests family needs that are independent of these factors. The weak association with family burden suggests that family needs require assessment regardless of level of burden. The lack of association with SDQ scores suggests that family needs are independent of problems experienced by the child. The important message from this is that it is essential to assess family needs directly since needs cannot be assumed based upon the characteristics of the child, the injury, or burden reported by family.
Burgess, E.W., Drotar, D., Taylor, H.G., et al. (1999). The Family Burden of Injury Interview: reliability and validity studies. J Head Trauma Rehabil. 14(4), 394-405.
Goodman, R. (1997). The Strengths and Difficulties Questionnaire: a research note. J Child Psychol Psychiatry. 43:1159-1167.
Kreutzer, J., Serio, C., & Bergquist, S. (1994). Family needs after brain injury: A quantitative analysis. Journal of Head Trauma Rehabilitation. 9(3):104-115.
Serio, C, Kreutzer, J & Witol, A. (1997). Family needs after traumatic brain injury: a factor analytic study of the Family Needs Questionnaire. Brain Injury, 11(1):1-9.