Family adjustment to disability and chronic illness in children

The aims of this thesis were threefold. First a measure of perceived positive gain was developed. Second it tested a model of adjustment to disability on cross-sectional questionnaire data from samples of mothers of children with spina bifida and hydrocephalus (N=290) and mothers of children with asthma (N=73). The third aim was to investigate the effect of perceived positive gain on the disability-outcome relationship. The first set of studies focused on the development of a measure of perceived positive gain. The reliability and validity of the 7-item measure were acceptable. Interspersing these items with items of the Parenting Stress Index-Short Form (PSI-SF36) did not jeopardize the psychometric properties of this measure but rather added to its predictive and construct validity. The second set of studies focused on testing the transactional stress and coping model of adjustment to disability. Structural equation modelling procedures permitted the identification of indirect and direct effects. Results provided general support for the proposed model. As expected, the effect of illness parameters on parent adjustment, i.e. parenting stress, was mediated by parental adaptation processes, i.e. coping, caregiving efficacy and family satisfaction, and child adjustment, i.e. child behavioural problems. The model applied to both conditions, providing support for the non-categorical approach. The third set of studies focused on the effect of positive gain on the illness-outcome relationship. Multigroup analyses in structural equation modelling were used to detect differences between high and low gain groups. Results showed that perceived positive gain moderates the illness-outcome relationship such that the effect of illness on parental adjustment is less in mothers with higher positive gain scores. Limitations of the studies and implications for future research were discussed.