Abstract
We investigated whether childhood factors that are amenable to intervention (parenting stress, child psychological problems and pain) predicted participation in daily activities and social roles of adolescents with cerebral palsy (CP). We randomly selected 1174 children aged 8-12 years from eight population-based registers of children with CP in six European countries; 743 (63%) agreed to participate. One further region recruited 75 children from multiple sources. These 818 children were visited at home at age 8-12 years, 594 (73%) agreed to follow-up at age 13-17 years.We used the following measures: parent reported stress (Parenting Stress Index Short Form), their child's psychological difficulties (Strength and Difficulties Questionnaire) and frequency and severity of pain; either child or parent reported the child's participation (LIFE Habits questionnaire). We fitted a structural equation model to each of the participation domains, regressing participation in childhood and adolescence on parenting stress, child psychological problems and pain, and regressing adolescent factors on the corresponding childhood factors; models were adjusted for impairment, region, age and gender.Pain in childhood predicted restricted adolescent participation in all domains except Mealtimes and Communication (standardized total indirect effects β -0.05 to -0.18, 0.01. <. p<. 0.05 to p<. 0.001, depending on domain). Psychological problems in childhood predicted restricted adolescent participation in all domains of social roles, and in Personal Care and Communication 9β -0.07 to -0.17, 0.001. <. p<. 0.01 to p<. 0.001). Parenting stress in childhood predicted restricted adolescent participation in Health Hygiene, Mobility and Relationships 9β -0.07 to -0.18, 0.001. <. p<. 0.01 to p<. 0.001). These childhood factors predicted adolescent participation largely via their effects on childhood participation; though in some domains early psychological problems and parenting stress in childhood predicted adolescent participation largely through their persistence into adolescence.We conclude that participation of adolescents with CP was predicted by early modifiable factors related to the child and family. Interventions for reduction of pain, psychological difficulties and parenting stress in childhood are justified not only for their intrinsic value, but also for probable benefits to childhood and adolescent participation.
| Original language | English |
|---|---|
| Journal | Research in Developmental Disabilities |
| Volume | 36 |
| Pages (from-to) | 551-564 |
| Number of pages | 14 |
| ISSN | 0891-4222 |
| DOIs | |
| Publication status | Published - 01.01.2015 |
Funding
SPARCLE 2 (visits in adolescence) was funded by: Wellcome Trust WT 086315 A1A (UK & Ireland); Medical Faculty of the University of Lübeck E40-2009 and E26-2010 (Germany); CNSA, INSERM, MiRe – DREES, IRESP (France); Ludvig and Sara Elsass Foundation, The Spastics Society and Vanforefonden (Denmark); Cooperativa Sociale “Gli Anni in Tasca” and Fondazione Carivit, Viterbo (Italy); Goteborg University – Riksforbundet for Rorelsehindrade Barn och Ungdomar and the Folke Bernadotte Foundation (Sweden). SPARCLE 1 (visits in childhood) was funded by the European Union Research Framework 5 Program – Grant number QLG5-CT-2002-00636 , the German Ministry of Health GRR-58640-2/14 and the German Foundation for the Disabled Child .
Research Areas and Centers
- Academic Focus: Center for Brain, Behavior and Metabolism (CBBM)
