Executive behavior and functional abilities in children with perinatal stroke and the associated caregiver impact

ABSTRACT

Perinatal stroke is the most common form of stroke in childhood and is followed by a variety of outcomes, with many children experiencing specific functional and neuropsychological deficits. The association of these outcomes with the psychosocial impact caregivers face is not well documented. The goal of our pilot study was to examine caregivers’ perception of executive behavior and functional abilities among children with perinatal stroke, and how these outcomes impact the caregivers. We administered three questionnaires to primary caregivers of children with perinatal stroke to obtain caregiver-reported measures of (1) executive behavior of their child (Behavior Rating Inventory of Executive Function, Second Edition), (2) the functional abilities of their child (Pediatric Evaluation of Disability Inventory Computer Adaptive Test), and (3) the psychosocial impact experienced by the caregiver themselves (Parental Outcome Measure). Participants included 20 children (mean age = 9.3 years, range = 6–16 years) with perinatal stroke and their primary caregivers. Functional abilities in the children were rated as clinically impaired in the domains of daily activities and mobility. Half of the children exhibited clinically impaired ratings on at least one executive behavior domain, but the mean scores for these domains did not reach clinically impaired levels. Greater ratings of problems in daily activities for the child was associated with greater caregiver guilt (r = −0.55, p = 0.02). Caregivers of children with perinatal stroke who experience limitations in performing daily activities should be more closely monitored for adverse impact and be provided the necessary support and education to alleviate the associated guilt.

KEYWORDS:

• Perinatal stroke
• executive behavior
• executive function
• functional abilities
• caregiver impact
• caregiver guilt

Acknowledgments

We would like to thank the families for their participation in the Alberta Perinatal Stroke Project (APSP) and their contribution to this study. Funding for this project was provided by Women and Children’s Health Research Institute (WCHRI) and Northern Alberta Clinical Trials and Research Centre (NACTRC).

Disclosure statement

Brian Brooks and Adam Kirton are co-authors of the Parental Outcome Measure (POM) used in this study, which is a public domain measure. Brian Brooks receives royalties for the sales of the Pediatric Forensic Neuropsychology textbook (2012, Oxford University Press) and three pediatric neuropsychological tests (Child and Adolescent Memory Profile (ChAMP, Sherman and Brooks, 2015, PAR Inc.), Memory Validity Profile (MVP, Sherman and Brooks, 2015, PAR Inc.), and Multidimensional Everyday Memory Ratings for Youth (MEMRY, Sherman and Brooks, 2017, PAR Inc.)). Brian Brooks has previously received in-kind support (free test credits) from the publisher of the computerized cognitive test (CNS Vital Signs, Chapel Hill, North Carolina). Brian Brooks acknowledges salary funding from the Canadian Institutes for Health Research (CIHR) Embedded Clinician Researcher Salary Award. Carmen Rasmussen acknowledges salary support from the Canadian Institutes of Health Research (CIHR) New Investigator Salary Award.

Additional information

Funding

Funding for this project was provided by a Women and Children’s Health Research Institute (WCHRI) Innovation Grant; and a Northern Alberta Clinical Trials and Research Centre (NACTRC) Summer Student Award.