Short-term changes in parents' resolution regarding their young child's diagnosis of cerebral palsy.

OBJECTIVE: This study aimed to describe changes in parents' resolution regarding their young child's diagnosis of cerebral palsy over a period of 1 year, and to describe the changes in strategies of resolution. METHODS: In this longitudinal study, 38 parents of children with cerebral palsy (mean age 18.4 months, SD = 1.1 at baseline) were followed with the Reaction to Diagnosis Interview, assessing their personal reactions to their child's diagnosis (i.e. resolution status). Changes at main and subclassification level of the Reaction to Diagnosis Interview were investigated using a binominal test. RESULTS: Twenty-nine parents (76%) were found to be stable with respect to their main resolution status (i.e. 'resolved' or 'unresolved'), while 24% of the parents either had changed from 'unresolved' to 'resolved' or in the opposite way. Furthermore, of the 28 parents who were classified as 'resolved' at both times, 15 (54%) had changed at subclassification level with respect to the specific strategies used. CONCLUSION: Resolution at a main level of parental reactions to their child's diagnosis was predominantly stable. Most parents were classified as 'resolved' at both baseline and follow-up assessment. However, more detailed analyses at subclassification level showed that most parents with a 'resolved' main status showed changing patterns of resolution strategies to their child's diagnosis, suggesting that resolution is an ongoing process.

Perceptions of family participation among parents of children with cerebral palsy followed from infancy to toddler hood.

BACKGROUND: Little is known about the way parents of children with cerebral palsy (CP) perceive their involvement in family and personal life situations, also called 'family participation'. PURPOSE: To investigate the perception of family participation among parents of preschool children with CP. METHOD: Semi-structured interviews were used to describe how parents (n=53) of children with CP (aged 18 months) perceive participation with respect to family activities and their personal activities. In addition, using a combined score of family and personal activities, we investigated the changes of parental (n=36) perceived family participation over time (followed from 18 months onwards until 42 months of age). RESULTS: At the child's age of 18 months, a substantial percentage of parents expressed a feeling of being restricted in their family activities (45%) or personal activities (53%). The longitudinal data show that over the 24-month follow-up significant more parents perceived to be restricted in family participation (p = 0.008; Cochran's Q test). CONCLUSIONS: A child with CP in a family may lead to parents perceiving restrictions in family participation. These restrictions arise early in the life of a child with CP and may become more prominent as the child grows older.

Parents' reactions to the diagnosis of cerebral palsy: associations between resolution, age and severity of disability.

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.

Parents of children with cerebral palsy: a review of factors related to the process of adaptation.

BACKGROUND: Little is known about the way parents adapt to the situation when their child is diagnosed with cerebral palsy. METHODS: A literature search was performed to gain a deeper insight in the process of adaptation of parents with a child with cerebral palsy and on factors related to this process. The selected articles were examined with respect to (i) the type and purpose of the study, (ii) study sample, (iii) variables and instruments and (iv) results on adaptation and stress of the parents. RESULTS: Twenty-two studies were found, which showed a large variety in research designs, instruments and populations. Despite methodological differences, it was possible to extract a number of factors related to resources of individual family members, the family unit as a whole and in the community, family appraisal and adaptive coping. CONCLUSION: It is important to realize that parents' adaptation may change as a function of their child's development and changing stages of family life over time. Until now cross-sectional studies have dominated this area of research, but in order to understand the process of adaptation over time, longitudinal studies are needed.