Transactional Model of Parental Adjustment and Caregiving Burden Following a Children's Acquired Disability

OBJECTIVES: Pediatric-acquired disability is often a crossroads in the lives of children and their parents, as they set out to adjust to a new physical impairment. This longitudinal study examined associations between the severity of children's-acquired disability, their parents' caregiver burden and adjustment, and parents' perception of the children's adjustment over time.

METHODS: Participants were parents and medical staff of 140 children with acquired disability, aged 1-18, hospitalized in pediatric or rehabilitation departments. Data were collected about 1 month after diagnosis (T1) and about 4 months later (T2). Parents completed background information, caregiver burden, child, and parental adjustment questionnaires. Medical staff contributed the disability severity indices.

RESULTS: The severity of the child's disability was negatively associated with parents' adjustment and perception of the child's adjustment. Caregiver burden was positively associated with the severity of the disability, and negatively with parents' adjustment and perception of their child's adjustment, at both time points. Over time, the severity of the disability and caregiver burden decreased, and parents' adjustment and perception of the child's adjustment improved. At T2, parents' and children's adjustment were strongly associated.

CONCLUSIONS : The findings revealed the relationship between objective severity indices and caregiver burden. They suggest that parents' adjustment may affect their perception of the child's adjustment to disability, and emphasize the role of parental perceptions over time. Therefore, parents who are less likely to adjust effectively should be identified early on to facilitate professional intervention.