Personal meaning of child disease as a factor of family adherence to treatment (studyof families raising children with cerebral palsy)

Abstract

The paper explains the usage of the terms «personal meaning of disease» and «adherence» to describe variants of mother’s attitude to her child’s disease. Based on the analysis of 25 mothers raising infants suffering from cerebral palsy, such personal meanings in relation to the child’s illness as conflict and barrier were identified; examples of possible secondary benefits from the child’s illness were depicted. Separately, a group of mothers after IVF with a mixed (barrier and conflict) personal meaning of the disease was described. Several assumptions were made about the factors that determine the harmonious person-notional context related to the infant’s illness. Within the framework of selected groups, mothers’ suppositions about the causes of their children’s illnesses were examined. Three degrees of adherence to the treatment of a disabled infant were outlined to illustrate the process of up-bringing infants with cerebral palsy. Also, their connection with the personal meaning of a child’s disease for parents and their suppositions about it was shown. The characteristic features of understanding adherence to treatment of similar diseases were marked out. The results demonstrate the necessity of psychological support programs for families with infants with cerebral palsy. Moreover, the obtained date will allow to individualize the strategy of psychological work, and it can become the basis of further research conducted in order to develop and improve the psychological support programs for families with children suffering chronic disabling diseases.

Keywords

• treatment adherence
• compliance
• personal meaning of disease
• cerebral palsy