Parenting stress and children with cerebral palsy: a European cross‐sectional survey

Abstract

AIM The aim of this study was to describe stress in the parents of children with cerebral palsy and investigate associations with very high stress.METHOD A cross-sectional survey was conducted of parents of 818 children aged 8 to 12 years from nine regions in Europe. Families were eligible to participate if they were living in one of the specified geographic areas. Parental stress was captured using the Parenting Stress Index Short Form, which has 36 items and takes 10 minutes to complete. Parents rate items on a 5-point Likert scale, with higher scores indicating higher stress. The Short Form yields scores on three subscales and a Total Stress score. A trained research associate administered the questionnaire in the child's home and visits lasted 90 to 120 minutes. All data collected were reported by parents unless otherwise stated. RESULTSThe Total Stress score on the Parenting Stress Index was dichotomized into scores of less than 99 or 99 or more, the latter indicating 'very high' stress. Most respondents were mothers (94%), and 26% reported very high stress levels. The parents of children with communication impairment had higher odds for very high stress (odds ratio [OR] 1.9; 95% confidence interval [CI] 1.2-3.0) than those whose child had no such impairment; the parents of children with moderate or severe pain had higher odds for very high stress (OR 1.7 [95% CI 1.1-2.4] and 2.5 [95% CI 1.5-4.3] respectively) than those whose child had no pain; and the parents of children with an intellectual impairment had higher odds for very high stress (OR 1.8; 95% CI 1.2-2.9) than those whose child had none. There was no association between very high stress and motor impairment. The subscales 'parent-child dysfunctional interaction' and 'difficult child' contributed most to the Total Stress score.

Listening to the screaming whisper: a voice of mother caregivers of children with autistic spectrum disorder (ASD)

“…Mothers who have children with ASD are likely to experience mental health problems beyond high stress levels (Parkes, Caravale, Marcelli, Franco, & Colver, 2011; Raina et al, 2005). Compared to mother caregivers of children with other disabilities, it has been reported that caregivers of children with ASD have higher levels of depression and anxiety but lower levels of psychological wellbeing (Benson & Karlof, 2009; Ekas, Whitman, & Shivers, 2009).…”

“…Compared to mother caregivers of children with other disabilities, it has been reported that caregivers of children with ASD have higher levels of depression and anxiety but lower levels of psychological wellbeing (Benson & Karlof, 2009; Ekas, Whitman, & Shivers, 2009). Depression is a particularly prevalent psychological issue among mothers of children with ASD (Parkes et al, 2011). It has been reported that mother caretakers with depression exhibit negative parenting behaviours and experience other psychological problems such as anxiety and isolation (Parkes et al, 2011; Raina et al, 2005).…”

“…Depression is a particularly prevalent psychological issue among mothers of children with ASD (Parkes et al, 2011). It has been reported that mother caretakers with depression exhibit negative parenting behaviours and experience other psychological problems such as anxiety and isolation (Parkes et al, 2011; Raina et al, 2005). However, other studies have shown that caregivers of children with ASD demonstrate effective coping strategies and adaptation to their life circumstances that result in family resilience (Jones & Passey, 2005; McCubbin, McCubbin, & Thompson, 2001).…”

Can robotic-based top-down rehabilitation therapies improve motor control in children with cerebral palsy? A perspective on the CPWalker project

“…Each motor module involves a basic activation pattern with variable weights of distribution to different muscles [7,8]. In this sense, the concept of muscle synergy has emerged in neuroscience and has been proposed as a mechanism for neural control of normal movement [9].…”

“…In this sense, the concept of muscle synergy has emerged in neuroscience and has been proposed as a mechanism for neural control of normal movement [9]. Muscle synergies in healthy subjects represent functional muscle coordination patterns used to reliably produce motor functions during natural motor behaviors (4-5 synergies for gait) [7,9,10]. Interestingly, a reduced number of synergies during gait have been reported for children with CP (2-3 synergies).…”