ABSTRACT
BACKGROUND: For parents, receiving a diagnosis, typically in early childhood, that their child has cerebral palsy may conjure up high distress and anxiety. Resolution of these initial reactions may help parents to focus on the challenges and needs of their children. AIMS: of the study were to test whether parents of older children displayed resolution more often than parents of younger children, and whether parents of children with less severe cerebral palsy also showed more resolution. METHOD: Resolution of reactions to diagnosis was assessed with the Reaction to Diagnosis Interview, in a clinic-based sample of 255 parents of children with cerebral palsy aged between 1.4 and 17.3 years. Physicians rated motor ability using the Gross Motor Function Classification System. RESULTS: Overall, the responses of 81.6% of the parents were predominantly indicative of resolution. Unresolved reactions were significantly more often found among parents of younger children and parents of children with more severe motor disabilities. Among parents of teenage children, resolution was more often apparent from a focus on action to better the lives of their children, whereas in parents of younger children, it was more apparent from their focus on constructive thoughts and information seeking. CONCLUSIONS: Given time, the large majority of parents may resolve their reactions to the diagnosis that their child has cerebral palsy. Parents of the most severely affected children may need specific support which, given the age trends, might be aimed at different resolution processes for parents of younger and older children.
Subject(s)
Cerebral Palsy/psychology , Parents/psychology , Truth Disclosure , Adaptation, Psychological , Adolescent , Age Factors , Cerebral Palsy/diagnosis , Child , Child, Preschool , Disability Evaluation , Female , Humans , Infant , Male , Motor Skills Disorders/diagnosis , Severity of Illness Index , Social Support , Stress, Psychological , Surveys and QuestionnairesABSTRACT
PURPOSE: This study aimed to investigate the experiences of Dutch siblings of children with physical disabilities (n=43). METHOD: Interviews were conducted to investigate experiences of siblings in 3 areas: the sibling relationship, the relationship with parents, and the relationship with others. The siblings also completed a coping response inventory. RESULTS: The siblings reported difficulties in undertaking activities and in communicating with their brother/sister with a disability. Most siblings worried about the future and the health of their brother/sister with a disability. The siblings reported open communication and trust as the main characteristics of the relationship with their parents. They acknowledged their parents' attempts to treat all children equally, although parents were not always successful in doing so. Having a sibling with a disability did not cause problems in the relationship with friends. The awkward reactions of strangers caused the siblings much annoyance and distress. Siblings in this sample used more approach coping strategies than avoidance strategies, t(34) = 2.37, p < 0.05. CONCLUSION: The brothers and sisters generally did not experience many significant problems, however, a minority of the children did experience problems for which they would like help. In addition, they reported joys as well as problems.