THE IMPACT OF CARING FOR A CHILD WITH CEREBRAL PALSY

BACKGROUND:

The challenge of caring for any child requires considerable resources, including time and money. In caring for a child with a disability, however, the demands for these resources are often significantly increased. Quality of life (QOL) is an individual’s perception of their position in life in the context of the culture and value systems in which they live, and in relation to their aims, expectations, standards and interests, conditioned by the environment. Cerebral palsy (CP) is a non-progressive disorder of movement and posture, with a prevalence of 2.83 per 1000 children among the age group of 0 to 19 years. It is one of the most common causes of disability globally. A child with CP suffers from several problems such as spastic paralysis, cognitive impairment, chronic pain, speech and visual impairment, and gastrointestinal and feeding problems.  Little is known about the QoL of children with disabilities, especially at the more severe end of the spectrum. It is now generally accepted that QoL is a subjective concept and therefore should be self-reported by the individual whenever possible. However it may not be possible to obtain reliable information from children with severe intellectual impairments or significant communication problems, and the use of proxies (usually mothers) for the assessment of QoL in such children is necessary. To focused on finding, stress, but failed to look at those families that did not experience heightened levels of stress. Investigations were needed of how parents adapt to their child with disability and factors associated with satisfaction and pleasure with parenting. Later studies reported that while parents of children with disabilities were at risk of above average stress levels, stress was not inevitable. There is wide variation in how families adapt, affected by personal characteristics, family dynamics and the support from the wider environment. There is relatively little research on stress in parents of children with cerebral palsy (CP), but most available studies report overall higher than average parenting stress levels. The main factor that resulted from the regression analysis was family needs, again reinforcing the point that if psychological, family or wider supports are not available to meet needs, then high maternal stress may result.

CONCLUSION:

Although many families cope well despite the added challenges of caring for a child with a disability, our findings suggest that the demands of their children’s disabilities can explain differences in the health status of parents and that parents of children with CP are more likely to have a variety of physical and psychologic health problems. Many of these findings are consistent with a stress process model, in which stress from care giving can directly or indirectly affect a variety of measures of health.

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