Long-term neurological illness in parents has a substantial impact on the lives of children

Abstract

A chronic illness, such as Parkinson's disease, affects the daily life of the patient and that of the family. While the effects of Parkinson's on the psychosocial functioning and quality of life of the patients and the spouse/carer have been investigated, there is limited information about the impact of parental Parkinson's on children. No instruments were available for quantitative assessment of the impact of chronic parental illness on children. As a first step towards investigating the psychosocial effects of parental Parkinson's on children, the Parental Illness Impact (PII) Scale was developed by our group at the Institute of Neurology. Studies of its psychometric properties have established that the PII Scale is a reliable and valid measure. Using this scale, we found that the greatest effect of parental Parkinson's was in terms of family functioning, burden of daily help, communication and understanding, and impact on personal future. In contrast, for the sample as a whole, the domains of social development, independence and responsibility, and friends' reactions were less severely affected. Compared to other chronic disorders, parental Parkinson's had the least negative impact (and parental multiple sclerosis and stroke the greatest impact) on children. Medical professionals need to be aware of the implications of chronic neurological illness for the family. Medical management of long-term neurological disorders should extend to the impact of these disorders on families.