Abstract
BackgroundJuvenile 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.MethodsCross-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.ResultsForty-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.ConclusionThis 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).
Highlights
Juvenile idiopathic arthritis (JIA) can lead to serious disability in children and adolescents, requiring intensive home care usually provided by parents .These parents must cope with physical, familial, social and financial constraints
Data collection and measurements The demographic, clinical, and biological data related to patients were collected. These included the type of JIA, the disease duration, and the disease activity score DAS28 ESR and its different components [DAS28 ESR = 0.56 √TJC + 0.28 √SJC + 0.70* (ESR) + 0.14*PtGA) with high activity (>5.1), moderate activity (3.2 – 5.1), low activity ( 2.6- 3.2) and remission (
Disrupted schedule of parents was correlated with disease severity assessed by physician Visual analogic scale (VAS) (p = 0.02), there was a statistically significant association between the duration of disease progression and financial problems of parents
Summary
Juvenile idiopathic arthritis (JIA) can lead to serious disability in children and adolescents, requiring intensive home care usually provided by parents .These parents must cope with physical, familial, social and financial constraints. Juvenile idiopathic arthritis (JIA) is the most common chronic inflammatory arthritis in children, and has dramatic consequences It encompasses a heterogeneous group of disease including inflammatory joint with no apparent etiology. The role of caregiver comprises the provision of the care itself, as well as provision of the expenses necessary for access to professional help, or for the acquisition of special equipment. This imposes a significant burden on caregivers. Caregivers can experience alterations in their psychological and physical health [3] They often indicate that their care tasks are demanding, especially when they have to perform unpleasant tasks, feel they have no time left for themselves, or when they become socially isolated. Caregivers of patients with chronic diseases including oncology, may feel strained, become depressed, or develop health problems [4]
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