Becoming a Parent of a Child with Intellectual Disability

Sammanfattning: When a child is diagnosed with intellectual disability (ID) parents’ reactions differ; some parents experience increased levels of stress and depression, while others find meaning in the duty of caring for a child with special needs. Parents’ reactions to diagnosis have also been found to be versatile within the person, with many parents expressing emotions that may be contradictory. How does a diagnosis of ID affect parents’ emotions towards, and descriptions of their child? The aim of Study I was to explore the variation of parents’ descriptions and experiences of their child that was recently diagnosed with ID. In Study I, 8 mothers and 9 fathers of 9 children that had been diagnosed with ID were interviewed with a semi-structured interview focusing on the parent’s daily life with the child. The narrative material was analysed in terms of content and narrative format. Three common factors were found in all interviews, indicating the parents’ level of processing; 1) emotional expressions regarding the child, 2) experience of the disability, 3) time orientation. The aims of Study II were: 1) to examine temperamental differences and similarities in young children with and without ID, 2) to investigate differences, and 3) agreement between mothers’ and fathers’ ratings of temperament in children with and without ID. In Study II 55 mothers and 44 fathers of 55 children with ID (aged 0-6 yrs), and 178 mothers and 149 fathers of 183 typically developing (TD) children completed the EASI temperament inventory. The main findings of Study II were that children with ID were described to have higher levels of Shyness and Impulsivity, and lower levels of Activity and Sociability when compared to TD children. Mothers and fathers did not differ in their ratings of children with or without ID, and mother-father agreement was equally high in the two groups. Results from Study I indicate that parental perceptions of the child with ID are negatively affected by receiving a diagnosis. For most parents, positive emotions co-exist and appear to counter-balance the negative emotions. Professionals need to be aware of the contradictory emotions commonly experienced by parents in this situation, and may be guided by paying attention to the combination and structure of emotions towards the child and the disability, as well as the time-orientation of parents’ narratives. Parents and children may benefit from early interventions, supporting parents to adjust to the circumstances of having a child with ID, as parental representations have been found to affect parental sensitivity and in turn child attachment. The findings from Study II indicating that there are temperamental differences between children with and without ID. In addition to typical individual variation, many of the children with ID will be less active, less sociable, and more impulsive than TD children due to the ID. However, there are children with ID who diverge from this pattern as individual variance within the group of children with ID was found to exceed that of TD children. Agreement between mothers and fathers of children with and without ID was equally high, and parents turn out to be reliable sources of information about child characteristics, but clinicians and researchers need to take into consideration that parents’ view of the child is relationship-specific and may differ from the perspective of objective raters.