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Participatory data analysis alongside co-researchers who have Down Syndrome
- Author:
- STEVENSON Miriam
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 27(1), 2013, pp.23-33.
- Publisher:
- Wiley
There are not many research projects which include people with an intellectual disability in data analysis. This paper tells the story of how a small group of people with Down syndrome called co-researchers, joined in analysing data from their peers in a research project. The ‘Voices for Change’ study took place between 2007 and 2011 and the project sought to assist the young people in achieving their life goals and greater social connection using a ‘circles of support’ model. A university based researcher analysed a portion of the data set using thematic networks with the participation of co-researchers in iterative cycles of reflexivity. The participation of the co-researchers is demonstrated and a global theme, deduced from the collaborative analysis, is described. Authentic participation of co-researchers in the data analysis stage of the research process is an example of ‘inclusive research’ and assures adherence to the principles of EDR in informing the theory and practice of social inclusion for young adults with an intellectual disability. (Edited publisher abstract)
The impact of having a sibling with an intellectual disability: parental perspectives in two disorders
- Authors:
- MULROY S., et al
- Journal article citation:
- Journal of Intellectual Disability Research, 52(3), March 2008, pp.216-229.
- Publisher:
- Wiley
The potential effects on other children when there is a child with intellectual disability (ID) in the family are being increasingly recognized. This study describes the impact of having a sibling with Down syndrome or Rett syndrome using a questionnaire completed by parents. The parents of 186 Western Australian children with Down syndrome and 141 Australian girls and women with Rett syndrome participated in the study. Patterns of reporting disadvantages and/or benefits were compared across a number of child and family variables (age, functional ability and birth order of the affected child, number of siblings and number of parents in the family home) and by socio-economic status as measured by the index of relative socio-economic disadvantage and by area of residence. Parents' responses to open-ended questions about the benefits and/or disadvantages for siblings of their child were analysed for themes. The majority of parents in the Rett syndrome and Down syndrome groups reported both disadvantages and benefits for siblings. In the Rett syndrome group, families from outer regional areas were the least likely to mention disadvantages and those with a smaller family more likely to note disadvantages. In both groups, more socio-economically advantaged families were more likely to report disadvantages. In the Down syndrome group, benefits were also more commonly reported by parents who were socio-economically advantaged, and by larger and two-parent families. Major disadvantages for siblings centred around parental and personal time constraints, relationships and socializing, restrictions, parental emotion and burden of helping. Major benefits were related to personality characteristics.
Understanding maternal support for autonomy in young children with Down syndrome
- Authors:
- GILMORE Linda, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, pp.92-101.
- Publisher:
- Wiley
Prior research has highlighted the importance of supporting the autonomy of children with Down syndrome from early childhood. There is some evidence to suggest that mothers of children with Down syndrome are more directive than those whose children are developing typically. However, the factors that contribute to maternal autonomy supportive vs. directive behaviours are not well understood. The current study aimed to explore the value and importance that mothers place upon their child's autonomy, as well as the specific factors that influence the support they provide. Interviews were conducted with 14 mothers of young children with Down syndrome. It was revealed that mothers held aspirations for their children's future that included autonomy and independence; however, their capacity to promote autonomy was sometimes constrained by a range of child and family factors, as well as by their focus on developing skills for independent functioning. Understanding the factors that may constrain support for autonomy represents an essential step in the process of designing interventions for promoting maternal support for autonomy in families of children with Down syndrome and other developmental disabilities. (Edited publisher abstract)
A new protocol to assess the subjective wellbeing of adolescents with intellectual disability
- Author:
- BLAKE Grant A.
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 14(4), 2017, p.298–308.
- Publisher:
- Wiley
Subjective well-being refers to an individual's satisfaction or happiness with their life. The construct is often measured with the Personal Wellbeing Index (PWI), which has been adapted for children of different ages, and adults with an intellectual disability (ID). However, there is no subjective well-being measure for adolescents with an ID. This study reports on the PWI-School Children with Intellectual Disability (PWI-SCwID), which trialled a pretesting Likert training protocol to enable valid completion of the questionnaire. From this, it was aimed that the subjective well-being of adolescents with ID would be compared to adults and adolescents without ID, and adults with ID. The PWI-SCwID was administered to 42 adolescents with ID. They had a mean age of 15.86 years (SD = 1.70) and 52% were female. Participants were recruited from special education schools and dance classes for adolescents with Down syndrome. Thirty-seven participants (88%) validly completed the PWI-SCwID. Of the 17 participants with Down syndrome, who are most likely to have moderate to severe intellectual disability, 76% returned valid questionnaires. Comparison of the current sample with other samples of adolescents and adults without ID found no significant differences in subjective well-being. Adults with ID from another study reported lower happiness with their standard of living than the current sample. The higher completion rate reported in this study is likely due to the implementation of training protocols that taught and assessed the participants’ ability to use a Likert-type scale. The high completion rate of participants with Down syndrome suggest that the revised protocols enable the collection of well-being data previously believed to be unattainable. The implication is that evaluating policy and interventions may consider the subjective well-being of a vulnerable group who typically have limited capacity to advocate for themselves. (Edited publisher abstract)
A randomized controlled trial of group Stepping Stones Triple P: a mixed-disability trial
- Authors:
- ROUX Gemma, SOFRONOFF Kate, SANDERS Matthew
- Journal article citation:
- Family Process, 52(3), 2013, pp.411-424.
- Publisher:
- Wiley
Stepping Stones Triple P (SSTP) is a parenting programme designed for families of a child with a disability. The current study involved a randomised controlled trial of Group Stepping Stones Triple P (GSSTP) for a mixed-disability group. Participants were 52 families of children diagnosed with an Autism Spectrum Disorder, Down syndrome, Cerebral Palsy, or an intellectual disability. The results demonstrated significant improvements in parent-reported child behaviour, parenting styles, parental satisfaction, and conflict about parenting. Results among participants were similar despite children's differing impairments. The intervention effect was maintained at 6-month follow-up. The results indicate that GSSTP is a promising intervention for a mixed-disability group. Limitations of the study, along with areas for future research, are also discussed. (Publisher abstract)
Changing student teachers' attitudes towards disability and inclusion
- Author:
- CUSKELLY Monica
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 28(4), December 2003, pp.369-379.
- Publisher:
- Taylor and Francis
A total of 274 preservice teacher education students were surveyed at the beginning and end of a one-semester unit on Human Development and Education which combined formal instruction with structured fieldwork experiences. The latter included interviewing community members regarding their knowledge of Down syndrome and opinions on inclusive education, and writing an associated report. At the end of semester, not only had student teachers acquired more accurate knowledge of Down syndrome, together with more positive attitudes towards the inclusive education of children with Down syndrome, but their attitudes towards disability in general had also changed, and they reported greater ease when interacting with people with disabilities. The study illustrated the value of combining information-based instruction with structured fieldwork experiences in changing attitudes towards disability and inclusion. It also demonstrated that raising awareness of one disability may lead to changes in attitudes towards disability in general.
Longitudinal course of behavioural and emotional problems of young persons with Prader-Willi, Fragile X, Williams and Down syndromes
- Authors:
- EINFELD Stewart, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 24(4), December 1999, pp.349-354.
- Publisher:
- Taylor and Francis
The authors present a comparison of levels of emotional and behavioural disturbance in children and adolescents with four genetically determined causes of intellectual disability (ID) and a control group epidemiologically derived young people with ID as a consequences of a range of known and unknown causes. The behavioural and emotional disturbances were reassessed 4 years later providing one of the few follow-up studies of these genetic disorders. The study shows that genetic cause of ID has a strong influence on the severity of behaviour problems.