Learning to read in regular and special schools: a follow up study of students with Down Syndrome

In 2006, a questionnaire was sent to 160 parents of children with Down syndrome in Dutch primary education (special and regular) with a response rate of 76%. Questions were related to the child's gender, age and school history, academic and non-academic skills, IQ, parental educational level, and the extent to which parents worked on academics with their child. In a 2010-follow-up, out of these 121 parents, 115 (95%) filled in a questionnaire on reading and school placement of 16 of these children, IQ was unknown. These children were excluded from the analysis. Controlling for reading scores at time 1 (2006) and the other 2006-variables, ANCOVA's showed that reading scores at time 2 (2010) were higher for children the more years they had been in a regular school between time 1 (t1) and time 2 (t2). This was true for the total group and particularly for the younger children(< 9 years), whether all children or only children still in regular education in 2006 were included. Predicting change scores confirmed this advantage of regular placement, but only in the younger children. Particularly during the first years of primary school, reading development of children with Down syndrome appears to be stimulated by regular school placement

HIV counselling and testing in secondary schools: what students want

Background: HIV counselling and testing (HCT) is an essential element in the response to the HIV epidemic. There are still major research gaps about the best ways to provide HCT, especially to the youth, and school-based HCT is a model that has been suggested. To make HCT youth friendly and to enhance access to the service, the particular needs of the youth need to be addressed. Aim: To explore the expressed needs of students about school-based HCT service provision. Method: The study was conducted in 6 secondary schools in Cape Town where a mobile HCT service is provided by a non-governmental organisation. In each school, two mixed gender focus groups were held, one with grades 8 and 9 students and one with grades 10 and 11. A total of 91 students aged 13-21 were involved. The focus groups were conducted in the students' home language. All groups were audio-recorded, transcribed verbatim and translated into English. Results: Content data analysis was done and the following themes emerged: (1) Where the students want HCT to be done, (2) How they want HCT to be done and (3) Who should do the counselling. Most students want HCT to be provided in schools on condition that their fears and expressed needs are taken into account. They raised concerns regarding privacy and confidentiality, and expressed the need to be given information regarding HCT before testing is done. They wanted staff providing the service to be experienced and trained to work with youth, and they wanted students who tested positive to be followed up and supported. Conclusion: To increase youth utilisation of the HCT service, their expressed needs should be taken into account when developing a model for school-based HCT

Parental strees and support of parents of children with spina bifida in Uganda

Background: Children with disabilities in Sub-Saharan Africa depend for a large part of their functioning on their parent or caregiver. This study explores parental stress and support of parents of children with spina bifida in Uganda. Objectives: The study aimed to explore perceived stress and support of parents of children with spina bifida living in Uganda and the factors that influence them. Methods: A total of 134 parents were interviewed. Focus group discussions were held with four parent support groups in four different regions within the country. The Vineland Adaptive Behaviour Scales, Daily Functioning Subscales and Parental Stress Index Short Form (PSI/SF) were administered to measure the child’s daily functioning level and parental stress levels. Results: Parental stress was high in our study population with over half of the parents having a > 90% percentile score on the PSI/SF. Stress outcomes were related to the ability to walk (Spearman’s correlation coefficient [ρ] = −0.245), continence (ρ = −0.182), use of clean intermittent catheterisation (ρ = −0.181) and bowel management (ρ = −0.213), receiving rehabilitative care (ρ = −0.211), household income (ρ = −0.178), geographical region (ρ = −0.203) and having support from another parent in taking care of the child (ρ = −0.234). Linear regression showed parental stress was mostly explained by the child’s inability to walk (β = −0.248), practicing bowel management (β = −0.468) and having another adult to provide support in caring for the child (β = −0.228). Parents in northern Uganda had significantly higher scores compared to parents in other regions (Parental Distress, F = 5.467*; Parent–Child Dysfunctional Interaction, F = 8.815**; Difficult Child score, F = 10.489**). Conclusion: Parents of children with spina bifida experience high levels of stress. To reduce this stress, rehabilitation services should focus on improving mobility. Advocacy to reduce stigmatisation and peer support networks also need to be strengthened and developed. Keywords: Parents; Stress; Spina Bifida; Disability; Afric

'I want support, not comments': children's perspectives on supports in their lives

Supports are a major part of the daily lives of children with special educational needs who participate in general education schools. Little attention has been paid to how they experience supports. Six children and their peers who were interviewed appreciated supports because they remove restrictions in activities due to the impairment. However, the analysis also shows how these positive supports can have negative psycho-emotional repercussions, and that they are less focused on addressing disabling barriers. The children’s accounts demonstrate the ambiguous and situated nature of supports, and need for the children to be able to direct supports as ‘chief partners’ in the inclusion process

Assessing individual support needs to enhance personal outcomes

Education and human service organizations providing services to people with intellectual and closely related developmental disabilities are increasingly being impacted by the supports paradigm, the quality of life concept, and the evaluation of personal outcomes. In this article the authors discuss the relationship among these three areas, including examples that illustrate how assessed support needs data can be aligned with quality-of-life-related core domains so as to establish individualized support systems that enhance personal outcomes. The article concludes with a discussion of the implications for educators and habilitation professionals of integrating the supports paradigm, the quality of life concept, and the evaluation of personal outcomes