Understanding Early Childhood Resilience Following Neonatal Brain Injury From Parents’ Perspectives Using a Mixed-Method Design

Abstract

Objectives: The current study used a mixed-method design to qualitatively examine parents’ definitions of resilience and factors they believed optimized their child’s early outcome following neonatal brain injury. This was followed by quantitative analyses of early developmental and mental health outcomes and their relation to salient biopsychosocial factors. Methods: Participants were parents of children diagnosed with neonatal brain injury due to stroke or hypoxic-ischemic encephalopathy (N=51; age range of children 18 months to 8 years). The Parent Experiences Questionnaire (PEQ) was used to qualitatively analyze parents’ open-ended responses about their child’s early experiences and outcome. The Child Behavior Checklist (CBCL) and Scales of Independent Behaviour Early Developmental Form (SIB-ED) parent ratings were used to measure child resilience from a quantitative perspective, identifying “at-risk” and “resilient” children using standard cutoffs. “Resilient” and “at-risk” children were compared on biopsychosocial variables using univariate t tests and chi-square analyses. Results: Parents provided five unique definitions of their child’s positive outcomes, and many children demonstrated resilience based on parent perspectives and quantitative definitions. Supporting factors included close medical follow-up, early intervention, and intrinsic factors within the child and parent. Group comparisons of “resilient” and “at-risk” children highlighted the importance of parent mental health across these early developmental and mental health outcomes. Conclusions: Many children were described as resilient during the early years by parents using qualitative and quantitative approaches. Findings highlighted the importance of parent well-being in promoting optimal early outcomes. (JINS, 2019, 25, 390–402.)

Pediatric rehabilitation.

“…Although re/habilitative services are typically available at the time of diagnosis, many neurocognitive challenges persist or worsen, particularly as demands for independent functioning increase with age. Considerable evidence suggests that the behavioral health care needs of children and adolescents with ABI go unmet, with parents and schools struggling to adequately support these children (Nicklin et al, 2019;Williams et al, 2019). Before delving further into considerations around intervention and the surrounding context, it is important to distinguish between rehabilitation and habilitation.…”

Factors Influencing Recovery From Pediatric Stroke Based on Discussions From a UK-Based Online Stroke Community: Qualitative Thematic Study

“…Good family functioning [ 4 ] also facilitates recovery from childhood stroke. Parents reported that treating the child as “normal” aided recovery [ 14 ]. A supportive social network, from close family and friends [ 14 ] to the wider society [ 13 ], is important for both parents and children to facilitate recovery.…”

“…Clear communication with parents by medical professionals about the causes of the stroke and events occurring around the stroke has been identified as an important issue [ 4 ]. Patients have appreciated positivity from clinicians [ 14 ], close and ongoing medical support [ 14 , 15 ], involvement with goal-setting approaches [ 16 , 17 ], and continuity of care. There is limited medical awareness or literature to support parents during their child’s recovery from stroke [ 2 , 9 , 12 ].…”

Feasibility and acceptability of an online parenting intervention to address behaviour problems in moderately to extremely preterm pre‐school and school‐age children

“…That same meta-analysis demonstrated a positive association of structure and responsivity with cognitive outcomes. Qualitatively, caregivers have identified addressing their children's mental health and behavioural challenges as central to optimizing their child's and family's overall well-being (Williams et al, 2019). Thus, parenting behaviours may be a modifiable pathway to improve both child and caregiver mental health outcomes.…”