International Perspectives on Family Needs After Pediatric ABI

Chairs

Caron Gan

Presenters:

Ingrid van't Hooft
Audrone Prasauskiene 
Naomi Brookes
 

Description:

When a child sustains an acquired brain injury (ABI), families must focus on both present and future needs as ABI has both an immediate and long term developmental impact on the child. High levels of family stress and caregiver burden have been reported, with up to 40% of parents reporting significant levels of anxiety and depression, which often persist or worsen over time. Studies on family needs after pediatric ABI have documented needs for information, ABI education, practical support, stress management, respite, and sibling/family support. Parents also identify unmet information and emotional support needs across the care trajectory from the time of the injury to their child’s return home and well into the future. In spite of this recognized need for family support, there has been no systematic way to assess the extent to which family needs are met after a child sustains an ABI. This is a significant clinical and research gap given evidence of the strong relationship between unmet family needs and increased family burden, which ultimately affects outcomes for the child.

Using a modified Delphi process, we adapted the well-validated adult Family Needs Questionnaire (FNQ-R) to create a pediatric version (Family Needs Questionnaire [FNQ-P]). The FNQ-P, which consists of 40 items, provides the clinician with a tool for assessing the degree to which the family’s needs have been met across six categories: Health Information, Emotional Support, Instrumental Support, Community Support, Professional Support, and Involvement with Care. Validation of this new measure is underway with pediatric rehabilitation partners in Canada, Sweden, Australia, UK, and Lithuania. Preliminary single centre FNQ-P results with the Canadian site demonstrated excellent test-retest reliability. There was lack of relationship between FNQ-P scores and injury severity and no more than a weak inverse association between time since injury and needs met. More definitive association conclusions will be possible once data collection across all sites is finalized (anticipated completion March 31, 2017, final total sample size goal = 75).

In this symposium, we will: 1) describe the development of the FNQ-P, 2) present results from our 5-site validation study, 3) share experiences around cross cultural perspectives of family needs, and 4) share ideas for FNQ-P implementation in different health care contexts and cultures. A video of clinician/family voices will highlight the importance of systematically assessing family needs after pediatric ABI.

The anticipated benefit of the FNQ-P is a measure that will enable: 1) systematic assessment of family needs for service planning and outcome measurement, 2) long-term monitoring of family needs over the care continuum, and 3) multi-centre use in clinical pediatric ABI research. We hope the FNQ-P will lead to stronger supports for families of children and youth after ABI.

 

Learning Objectives:

  1. Describe the Pediatric Family Needs Questionnaire (FNQ-P), its psychometric properties, and its use in assessing family needs after pediatric ABI.
  2. Compare international perspectives of family needs after pediatric ABI.
  3. Discuss application of the FNQ-P in different health care settings, at different points of time post-injury, and in different cultural contexts.