Health related quality of life and parental perceptions of child vulnerability among parents of a child with juvenile idiopathic arthritis: results from a web-based survey

Abstract

BackgroundA chronic illness, such as Juvenile Idiopathic Arthritis (JIA), has an impact on the whole family, especially on parents caring for the ill child. Therefore the aim of this study is to evaluate parental Health Related Quality of Life (HRQOL) and parental perceptions of child vulnerability (PPCV) and associated variables in parents of a child with JIA.MethodsParents of all JIA patients (0–18 years) in Amsterdam, the Netherlands, were eligible. HRQOL was measured using the TNO-AZL Questionnaire (TAAQOL) and PPCV using the Child Vulnerability Scale (CVS). The HRQOL of parents of a child with JIA was compared to a norm population, and differences between parents of a child with JIA and active arthritis versus parents of a child with JIA without active arthritis were analyzed (ANOVA). For PPCV, parents of a child with JIA were compared to a norm population, including healthy and chronically ill children (Chi2, Mann-Whitney U test). Variables associated with PPCV were identified by logistic regression analyses.Results155 parents (87.5% mothers) completed online questionnaires. JIA parents showed worse HRQOL than parents of healthy children on one out of twelve domains: fine motor HRQOL (p < .001). Parents of children with active arthritis showed worse HRQOL regarding daily activities (p < .05), cognitive functioning (p < .01) and depressive emotions (p < .05) compared to parents of children without active arthritis. Parents of children with JIA perceived their child as more vulnerable than parents of a healthy child (p < .001) and parents of a chronically ill child (p < .001). Parents of children with active arthritis reported higher levels of PPCV (p < .05) than parents of children without active arthritis. A higher degree of functional disability (p < .01) and shorter disease duration (p < .05) were associated with higher levels of PPCV.ConclusionThe HRQOL of JIA parents was comparable to the HRQOL of parents of a healthy child. JIA parents of a child with active arthritis showed worse HRQOL than parents of a child without active arthritis. Parents perceived their child with JIA as vulnerable.

Parental perception of child vulnerability in childhood cancer survivors

“…Similarly, parental perceptions of vulnerability were not associated with prior or current physical illness severity as reported in several studies of children after premature birth, 29,30 asthma exacerbations, 31 and arthritis flare-up. 32 Although the results of the present study did not show an association between child mental health or cognitive disabilities and perceived child vulnerability, several studies have linked parental perceived vulnerability with emotional dysregulation in children with chronic diseases. 1,5,12,33 These findings are presented in light of certain study limitations.…”

“…As such, we did not collect detailed information on parents, which limited our ability to examine parental knowledge about survivorship issues, parental mental health, or parental cognitive abilities. Previous studies looking at parental age, education, and mental health status as predictive risk factors for perceived vulnerability of chronically ill children have reported mixed results . In childhood cancer survivorship studies that addressed parental needs after receiving education on late complications, more than half of parents still felt unprepared to address their child's future health needs and more than half desired further information .…”

“…Previous studies looking at parental age, education, and mental health status as predictive risk factors for perceived vulnerability of chronically ill children have reported mixed results. 1,[4][5][6]14,29,30,32 In childhood cancer survivorship studies that addressed parental needs after receiving education on late complications, more than half of parents still felt unprepared to address their child's future health needs 40 and more than half desired further information. 41 In a systematic review of studies addressing late psychological issues for parents of survivors, general distress was comparable to controls.…”

<p>Depression And Anxiety In Patients With Juvenile Idiopathic Arthritis: Current Insights And Impact On Quality Of Life, A Systematic Review</p>

“…[24][25][26][27][28][30][31][32][33][34][35][36][37][38][39][40][41][42][43][44] JIA subtype was described in 14 studies: 13 included polyarticular, [24][25][26]30,31,[35][36][37][38][39][40]45,46 11 included oligoarticular, 24,26,30,31,[35][36][37][38][39][40]46 10 included systemic, 25,26,30,31,[35][36][37][38]…”

Use of smartphones to prospectively evaluate predictors and outcomes of caregiver responses to pain in youth with chronic disease

“…Comparatively less is known about predictors and outcomes of parent responses to pain in youth with a painful chronic disease. Pain expression in a child with chronic disease may be likely to elicit extra vigilance and protective responses from parents due to a heightened perception of the child's vulnerability to a medical issue [24]. Which responses lead to better or worse pain or functioning outcomes in youth with a painful chronic disease remains speculative.…”