Search

Background: The UN Convention on the Rights of Persons with Disabilities requires accessibility to the physical and social environments. However, individuals with cerebral palsy (CP) have many difficulties in accessing the environment they need for functional independence and social inclusion.Aims: To examine the availability of environmental features which children with CP need for optimal participation, and whether availability changed for them between ages 8-12 and 13-17 years.Methods: The sample is the 594 children with CP, born 31/07/1991-01/04/1997, who took part in the SPARCLE study at age 8-12 (SPARCLE 1) and again at 13-17 years (SPARCLE 2). Participants were randomly sampled from population registers of children with CP in eight European regions; one further region recruited from multiple sources. Data about environment were captured with the European Child Environment Questionnaire (60 items). Differences in availability of environmental features between childhood and adolescence were assessed using McNemar's test; differences between regions were assessed by ranking regions. Differences in availability between regions were assessed by ranking regions.Results: For seven environmental features significantly (p<0.01) fewer individuals needed the feature in SPARCLE 2 than in SPARCLE 1, whilst for two features more individuals needed the feature. Nine features in SPARCLE 1 and six features in SPARCLE 2 were available to less than half the participants who needed them. Eight features showed significantly (p<0.01) higher availability in SPARCLE 2 than in SPARCLE 1 (enlarged rooms, adapted toilet, modified kitchen and hoists at home, adapted toilets and lifts at school, an adequate vehicle, grants for home modifications) while none showed significantly lower availability. The relative rankings of the better and less good regions persisted from the age 8-12year age group to the 13-17year age group.Conclusions: Needed environmental features are unavailable to many children at ages 8-12 and 13-17 years. This lack of availability is more pronounced in some regions than others, which probably results from their policy, legislative and statutory frameworks. [ABSTRACT FROM AUTHOR]

Objective: To assess whether being contacted about or participating in previous research and method of approaching potential participants affected recruitment to a transition study from child to adult healthcare services of young people with cerebral palsy (CP)., Design and Methods: Young people with CP aged 14-18 years without severe intellectual impairment were identified from regional registers of CP in Northern Ireland and the North of England. χ 2 and Mann-Whitney U tests were used to assess differences in CP and sociodemographic characteristics between those recruited and those who refused. Logistic regression was used to assess contact about and recruitment to previous research and method of approach as predictors of recruitment, controlling for demographic and CP characteristics., Results: Of the 410 young people who were approached; 162 did not respond and of the 248 who responded, 96 (23%) were recruited. There were significant differences between those recruited and those who refused in age and number of previous studies they had participated in. Those who were older or who had previously been approached about research were more likely to be recruited to our study. However, those who had been recruited to previous studies were more likely to refuse to join our study., Conclusions: The method of approach to potential participants did not affect recruitment. Older adolescents and those who had been approached about previous research were more likely to take part in our study, although there was evidence of research fatigue because if they had actually been recruited to the previous studies they were less likely to join our study. Recruitment of adolescents to studies remains challenging., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY. Published by BMJ.)