Quality of life of caregivers of children with cerebral palsy in Armenia : a cross-sectional study

Abstract

Introduction: Family caregivers (FCGs) of children with cerebral palsy (CP) are under higher risks of developing physical and mental health problems, and they encounter greater challenges that may negatively impact their overall quality of life. The enhanced demands of caregiving may affect FCGs dignity and well-being as well. The variety of manifestations of CP may differently impact the health of FCGs: the situation of FCGs of more dependent children may differ from those of more independent ones. The problems of children with CP and their caregivers have not been investigated in Armenia. Thus, the aim of this study was to investigate the associations between the levels of CP severity (i.e., dependence) in children and the pain syndromes, as well as mental health outcomes of their FCGs in Armenia. Methods: Two hundred CP children and their FCGs were included in this crosssectional study. Child characteristics were retrieved from medical records at the tertiary care center delivering rehabilitation treatment to children with chronic diseases. Gross Motor Function Classification System (GMFCS) served to classify children as more independent (Levels I and II) and more dependent (Levels III-V). Two hundred FCGs completed phone call interviews (100 FCGs of more independent children and 100 FCGs of more dependent ones). Armenian versions of SF-36, Center for Epidemiologic Studies Depression scale, Anxiety Symptom Checklist 90, and 18-item dignity questionnaires were utilized to measure the pain, quality of life, depression, anxiety, and dignity levels of FCGs. An additional questionnaire was also used to measure the socio-demographic characteristics of FCGs. Multivariable linear regression analysis was conducted with adjusting for identified confounders to explore the association between the health and well-being outcomes of FCGs and the severity of limitations of CP children. Results: To reach the pre-defined sample size, 999 medical records were investigated and 221 eligible FCGs were contacted (9.5% refusal rate). The groups were similar in most of socio-demographic characteristics. FCGs of more dependent children reported to perceive higher negative influence of caregiving, feeding difficulties and caregiving demands.

There was no association between bodily pain, depression and anxiety of FCGs and the severity of limitations of CP children. FCGs of more dependent children reported significantly lower dignity levels if compared with those of more independent children. Conclusions: The dignity levels of FCGs was first time analyzed in quantitative study. The health and well-being of FCGs of CP children was first time investigated in Armenia. Strengths and weaknesses related to study design and methodology are highlighted. The needs for interventions and policy setting, as well as the directions for further investigations are described.