Parent and family impact of raising a child with perinatal stroke

Abstract

BackgroundPerinatal stroke is a leading cause of early brain injury, cerebral palsy, and lifelong neurological morbidity. No study to date has examined the impact of raising a child with perinatal stroke on parents and families. However, a large breadth of research suggests that parents, especially mothers, may be at increased risk for psychological concerns. The primary aim of this study was to examine the impact of raising a child with perinatal stroke on mothers’ wellbeing. A secondary aim was to examine how caring for a child with perinatal stroke differentially affects mothers and fathers.MethodsIn Study I, a matched case-control design was used to compare the wellbeing of mothers of children with perinatal stroke and mothers of children with typical development. In Study II, a matched case-control design was used to compare mother-father dyads. Participants completed validated measures of anxiety and depression, stress, quality of life and family functioning, marital satisfaction, and marital distress. Parents of children with perinatal stroke also completed a recently validated measure of the psychosocial impact of perinatal stroke including guilt and blame outcomes. Disease severity was categorized by parents, validated by the Pediatric Stroke Outcome Measure (PSOM), and compared across the above outcomes in Study I.ResultsA total of 112 mothers participated in Study I (n = 56 per group; mean child age = 7.42 years), and 56 parents participated in Study II (n = 28 per group; mean child age = 8.25 years). In Study I, parent assessment of disease severity was correlated with PSOM scores (γ = 0.75, p < .001) and associated with parent outcomes. Mothers of children with mild conditions were indistinguishable from controls on the outcome measures. However, mothers of children with moderate/severe conditions had poorer outcomes on measures of depression, marital satisfaction, quality of life, and family functioning. In Study II, mothers and fathers had similar outcomes except mothers demonstrated a greater burden of guilt and higher levels of anxiety.ConclusionsAlthough most mothers of children with perinatal stroke adapt well, mothers of children with moderate/severe conditions appear to be at higher risk for psychological concerns.

Comparison of depression and quality of life of mothers and fathers of children with cerebral palsy

“…It was suggested that these findings might be due to the primary role of mothers in child care. On the other hand, Bemister et al demonstrated that mothers had slightly higher depression levels than fathers in the study performed in USA (13). In contrast to these findings, Al-Gamal et al reported no difference on depression levels of mothers and fathers of children with CP (14).…”

Participatory design in the development of an early therapy intervention for perinatal stroke

“…Parents mentioned the strong sense of guilt and self-blame experienced after a diagnosis of perinatal stroke – a recognised problem [74, 75]:… you blame yourself and then you, you think that everyone else is blaming you as well. – Mother, Focus group 1…”

“…Furthermore, following a diagnosis of perinatal stroke, families experience a range of emotions including feelings of guilt and self-blame [74, 75]. There is also uncertainty about the future in terms of the nature and severity of difficulties their child may face.…”

Prevalence of Excess Sodium Intake in the United States — NHANES, 2009–2012

“…230 Severity of disability after perinatal stroke correlates with maternal psychosocial outcomes such as depression and quality of life. 231 …”