Abstract
Cerebral palsy, with a prevalence in Europe of 2-2.5 per 1000 live births, is the most common severe physical disability affecting children. While many parents have positive perceptions of their disabled children, caring for a child with disability can be exhausting and stressful, and social support is an important coping resource. There is little evidence about how having a child with cerebral palsy affects Jordanian parents.
The purpose of this study was to provide insight into the psychological distress and perceived support among Jordanian parents living with a child with cerebral palsy.
In 2010, a cross-sectional, descriptive, correlational design was used with a nonprobability sample of 204 Jordanian parents. Both mothers and fathers, interviewed individually rather than in pairs, were recruited from health care centres that provided comprehensive care for children with cerebral palsy in Jordan and from designated schools for special education. The Gross Motor Function Classification System, the Perceived Stress Scale (PSS), the Beck Depression Inventory, the Strengths and Difficulties Questionnaire and the Multidimensional Scale of Perceived Social Support (MSPSS) were administered to parents. Descriptive statistical analysis was applied. Bivariate correlation analysis was undertaken to examine the relationship between variables.
More than 60% of parents often felt nervous and stressed. The mean score on the PSS was 27.0 (SD=9.33), and the mean score on the MSPSS was 58.9 (SD=15.1). Severe disability in the child was associated with high mental distress in the parent and linked to low support from friends. There was a significant negative correlation between parental stress, depression and social support. Parents with the most psychological distress were the least well supported.
This study has implications for health professionals in terms of developing strategies for reducing parental stress. There are implications for policy to provide support for parents and to develop family-centred services. The findings will inform an intervention study to investigate multi-professional support.