Neurodevelopmental diagnostic status: impact on family wellbeing and parent attributions of child behaviour

Abstract

BACKGROUND: Past research has demonstrated the range of difficulties families with neurodivergent children face, particularly with regards to seeking diagnosis and support, including extensive waits and inconsistent service provision. There is rich qualitative evidence on the positive impact of a diagnosis in terms of building understanding and opening doors to support, however there are also experiences of continued difficulty after diagnosis. There is a lack of quantitative research that explores the impact of diagnosis. There is growing evidence that a child neurodevelopmental diagnosis may also shape parent meaning making, or attributions, of their child’s behaviour. However, no comprehensive review of this topic has synthesised in what ways attributions may differ.

OBJECTIVES: The primary aims of these studies were to: (1) synthesise comparisons of attributions of child behaviour made by parents of neurodivergent children with parents of neurotypical children to understand the use of diagnostic label in meaning-making of child behaviour, and (2) understand the family impact of a neurodevelopmental diagnosis by comparing those seeking assessment on measures of wellbeing. Additional aims were to understand predictors of parent distress and the relationship between time seeking assessment and parent and child outcomes.

METHODS: A systematic search was conducted across databases and grey literature sources, in addition to searches in citing and cited literature. Included studies compared attributions of child behaviour between parents of neurodivergent children and parents of neurotypical children. Following double screening, studies were assessed using an adapted Newcastle-Ottawa Scale-xs critical appraisal tool. Multi-level random-effects meta-analyses were conducted by behaviour type and attribution dimension.

A between-subjects cross-sectional study recruited two groups of parents to complete an online questionnaire. 306 parents of children with a confirmed neurodevelopmental diagnosis and 146 parents of children seeking assessment for a neurodevelopmental diagnosis completed measures of parent wellbeing, child quality of life and behaviour difficulties, parent attributions of child behaviour, and support for the family. MANCOVAs with follow-up univariate F-tests compared groups on these measures. A hierarchical multiple regression assessed predictors of parent distress, and Spearman correlations were conducted between parent and child outcomes and time seeking assessment or since diagnosis.

RESULTS: 15 studies were included in the systematic review. Moderate to high risk of bias was noted. 19 meta-analyses were conducted across behaviour types and attribution dimensions, in which high heterogeneity was observed. Analyses showed that parents of neurodivergent children made attributions of lower child controllability across behaviour types than parents of neurotypical children. They also made attributions of higher stability for negative and inattentive-overactive behaviours and lower stability for positive behaviours. Parents of neurodivergent children made more child-internal attributions for negative and inattentive-overactive behaviour.

From the empirical paper, children with confirmed diagnoses showed higher parent-reported quality of life in school and family domains than children seeking assessment. Parents of children seeking assessment showed greater endorsement of attributions of intent for disruptive behaviour. A main effect was observed for child behaviour, but follow-up tests were non-significant. No significant differences were observed for parent wellbeing measures or support. Parent distress was found to be predicted by financial hardship, child quality of life, attributions of lower ability regarding dysregulated behaviour, helpfulness of support, and more sources of support. There was a positive correlation between time seeking assessment and parent distress, but not child measures.

CONCLUSIONS: Together, these studies suggest that a neurodevelopmental diagnosis may influence parent attributions about their child’s behaviour. Implications are discussed for parenting practices and interventions. Further, empirical findings suggested a positive impact of diagnosis for children, but not parent wellbeing. The relationship between parent distress and support, financial aid, and shorter waits to assessment offers insight into how services might better support parents. Future research should seek to confirm findings longitudinally