Parent stress and children with cerebral palsy

Abstract

Parenting a child with cerebral palsy is at least as challenging as parenting a child with typical development. Caregivers of children with cerebral palsy are strongly influenced by the needs of their children.1 Although the body of literature addressing parent stress in families with a child with cerebral palsy is not large, the growing evidence has been supplemented and illuminated by the work of Parkes et al.2 Working with data gathered through SPARCLE (Study of Participation of Children with Cerebral Palsy in Europe), the authors present the most convincing data to date regarding this subject. Among the strengths of the study are the size and the composition of the study group, arguably representative of the overall population of European children with cerebral palsy. While it is reassuring to learn that most parents of children with cerebral palsy have normal levels of stress, it is not surprising that very high levels are more prevalent in parents of children with cerebral palsy than in the general population. Similarly, an association between high stress and having a child with cerebral palsy who has intellectual disability, communication impairment, or pain is intuitive. Less intuitive is the absence of a relationship between the Gross Motor Function Classification System (GMFCS) level and parent stress. Other investigators have demonstrated relationships between motor disability and parent stress, but often have not had a sufficient sample size to pursue multivariate regression models. Parkes et al.2 demonstrate that GMFCS level is not a significant contributor when other associated factors are included. Even so, their model, like others reported to date3, accounts for only a fraction of the determinants. An array of issues undoubtedly impacts on the levels of stress for parents of children with cerebral palsy. While the severity of motor impairment may not be a direct contributor, complications and comorbidities of cerebral palsy including pain and intellectual disability do appear to increase parent stress. Other factors may not be as easily defined, but have similar effects. Beyond the immediate manifestations of cerebral palsy, innate qualities of the child including temperament and behavior are also important. Extrinsic to the child with cerebral palsy, parent function, parent coping, family resources, as well as community and societal influences are additional contributors to well-being and stress. It is good to recognize the known risk factors for increased parent stress. At the same time, we must remain alert to diverse and presently unquantified threats to optimal family functioning and well-being. Children with cerebral palsy deserve truly family-centered care. As we acknowledge several substantiated risk factors for parent stress, we must also respond to multifaceted needs of children with cerebral palsy and their families. The status of children with cerebral palsy – and, indeed, the status of their parents – is highly intertwined with parent stress. Directing efforts to maximize the function or wellness of children with cerebral palsy may help to reduce this. Conversely, employing mechanisms for stress reduction may result in improvements for their children. Research to date has not evaluated causation in these arenas, but there is no reason to delay in offering support to families of children with cerebral palsy. Integrated, family-centered services that focus on maximizing the child’s function and supporting parents should be expected to produce superior outcomes for the family as a whole.