Needs of Families with Children with Cerebral Palsy and Factors Affecting These Needs. Summary of the Doctoral Thesis

Abstract

Cerebral palsy is the most common cause of physical disability among children with a potentially negative impact on the quality of life and involvement in the community not only for the child but also for the whole family. In order to provide comprehensive support to families who are raising children with developmental disorders, it is important to study the family needs and understand circumstances that may affect them. The aim of the present study is to identify the needs of the families with preschool children with cerebral palsy, and study how these needs relate with the factors associated with families, children and rehabilitation services. The theoretical part of the present paper lists the types of needs and identifies the factors affecting the family needs. During the process of obtaining data, information about overall family needs, as well as needs for information, services, support and financial needs was collected. Results of the study reveal that families living in Latvia most often need different information, support and coordination of services, they also need financial support to cover costs of child care and treatment. Results of the data analysis support the hypothesis that factors characterising families, children with cerebral palsy and rehabilitation services affect the needs of the families with preschool children with cerebral palsy living in Latvia, and the unique impact of these factors depend on the type of the needs. Overall family needs are best explained by the support received from other family members. The next most important factors are family’s income level, employment of the child’s primary caretaker, the perceived stress level and support from professionals, as well as provision of services based on cooperation principles, and the number of comorbidities to the child, while the level of limitation of mobility for the child had a somewhat lower impact. Family needs for services are best explained by the child’s socialization, level of communication limitations and perceived stress level of the child’s primary caretaker, while they were slightly less explained by the family’s income level, employment of the child’s caretaker and support from other family members, as well as provision of services based on cooperation principles. Financial needs of families were fully explained by family income and limitations of the child’s mobility, while they were slightly less explained by employment of the child’s primary caretaker, provision of services based on cooperation principles and support from other family members, as well as the number of comorbidities the child had. Needs for support were best explained by the support from other family members, and to a lesser extent by support from professionals and provision of services based on cooperation principles, education and perceived stress level of the child’s primary caretaker, as well as the number of comorbidities of the child with cerebral palsy. Family needs for information were equally explained by such factors as the support from professionals and other family members, provision of services based on overall information provision principles, family’s income level and communication limitations of the child with cerebral palsy. The results of the study reveal that the most important factors affecting needs of families living in Latvia are related with the socio-economic situation, as well as support of peers and professionals. Availability and regularity of rehabilitation services, limitations to the child’s functions and health impairments are factors that affect family needs to a lesser extent.