Moroccan parents caring for children with juvenile idiopathic arthritis: positive and negative aspects of their experiences

BACKGROUND: Juvenile idiopathic arthritis (JIA) can lead to serious disability in children and adolescents, requiring intensive home care usually provided by parents .These parents must also cope with physical, familial, social and financial constraints. The aim of this study is to evaluate the positive and negative impacts of caregiving on parents to children with JIA, and identify diseases-related variables that affect these outcomes. METHODS: Cross-sectional study including 47 patients diagnosed with JIA defined by the International League of association for Rheumatology (ILAR) 2001 classification. Socio-demographic, clinical and biological data related to patient and disease were collected. Positive and negative effects of caregiving on parents of children with JIA were assessed via a validated instrument; the Caregiver Reaction Assessment (CRA).The CRA assesses parent’s self-esteem, financial problems, health problems, disrupted schedule and lack of family support. All parents completed the CRA questionnaire. A statistical analysis was conducted to determine the influence of disease-related variables on caregivers. RESULTS: Forty-seven patients were included with 40.4% female. The average patient age was 11 years, and a mean patient body mass index (BMI) was 18. Forty patients were in school. Median disease duration of JIA was 4 years. The most frequent arthritis subtype was persistent oligoarthritis in 12-patients. Nearly 15% had extra-articular manifestations most frequently ocular involvement (6.4%). Median of global Visual analogic scale (VAS) was 20 and median Child health assessment questionnaire (CHAQ) was 0. The primary caregiver was the mother for all patients. Mean maternal age was 38 years, 42% of mothers were illiterate, and nearly all (95%) were without employment. The mean values of different dimensions of the CRA were respectively: self-esteem 3.5, financial problems 3.7, health problem 2.4, disrupted schedule 3.6 and familial support 2.9. Disrupted schedule of parents was correlated with disease severity assessed by physician VAS (p = 0.02). Financial problems of parents were significantly associated with disease duration (p = 0.04). There was no significant association between the type of JIA, activity or severity of the disease and other dimensions of the CRA. CONCLUSION: This study suggests that the management of children with JIA has a high negative impact among caregiving parents, represented mainly by the disruption of their activities, the lack of family support, financial problems and health problems. However, caregiving often also improves caregiver’s self-esteem (feeling of gratification to be helping).