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“I love my sister, but sometimes I don't”: a qualitative study into the experiences of siblings of a child with profound intellectual and multiple disabilities
- Authors:
- LUIJKX Jorien, PUTTEN Annette A.J. van der, VLASKAMP Carla
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(4), 2016, pp.279-288.
- Publisher:
- Taylor and Francis
Background: Many previous family quality of life studies have relied on parental information for understanding if and how having a sibling with profound intellectual and multiple disabilities (PIMD) influences the sibling’s quality of life. In the current study, children had the opportunity to describe both positive and negative aspects of having a sibling with PIMD. Method: Photo elicitation interviews were conducted with 18 children (6–13 years old) and thematically analysed using the following domains: joint activities, mutual understanding, private time, acceptance, forbearance, trust in wellbeing, exchanging experiences, social support, and dealing with the outside world. Results: Overall, the children described both positive and negative experiences, indicating that having a sibling with PIMD influenced their quality of life in multiple ways. Most mentioned were experiences classified in the joint activities domain. Conclusion: Having a sibling with PIMD influences the life of the interviewed children both positively and negatively. Both the opportunity for shared activities with the sibling with PIMD and moments of private time are important for sibling quality of life. (Publisher abstract)
Staff ability to carry out behavioural strategies for individuals with intellectual disabilities and challenging behaviours
- Authors:
- KLAVER Marian, et al
- Journal article citation:
- Advances in Mental Health and Intellectual Disabilities, 10(4), 2016, pp.248-257.
- Publisher:
- Emerald
Purpose: The purpose of this paper is to give an overview of studies that focused on variables likely to affect staff ability to carry out behavioural strategies for challenging behaviours in individuals with intellectual disabilities. Design/methodology/approach: Literature review: studies that were published in a peer reviewed journal, between 1999 and 2016, were selected for this review. Findings: In total, 29 articles were selected. Several factors likely affect staff ability to appropriately carry out behavioural interventions were identified: staff assumptions, distressing emotions elicited by challenging behaviours, reciprocal reinforcement systems, service characteristics and cultural systems. Originality/value: These findings raise the question what staff need in order to be able to change their naturally occurring behaviours in response to challenging behaviours and to carry out behavioural interventions. Future research may identify barriers and facilitators underlying the provision of effective interventions, taking into account the possible role of staff beliefs, their emotions, service characteristics and cultural systems. (Publisher abstract)
Direct support professionals and reversed integration of people with intellectual disabilities: impact of attitudes, perceived social norms, and meta-evaluations
- Authors:
- VENEMA Eleonora, OTTEN Sabine, VALSKAMP Carla
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(1), 2016, pp.41-49.
- Publisher:
- Wiley
Direct support professionals (DSPs) play an important role in the process of integration of people with intellectual disabilities. Nevertheless, little is currently known about what determines the level of effort exerted by DSPs to enable the social integration of their clients. The aim of this study was to investigate three different psychological determinants (attitudes, social norms, and meta-evaluations) of the behavioural intentions of DSPs to facilitate the social integration of their clients. Semi-structured interviews were conducted with 28 DSPs working in a setting of 'reversed integration,' as well as 25 family members and 25 neighbours. The DSPs’ perceived social norms and meta-evaluations of neighbours and family members were compared with their actual social norms and evaluations. The authors found that half of the DSPs interviewed were positive about integration, whereas the other half were negative or neutral. Concerning social norms, the DSPs expect neighbours to have neutral attitudes toward the integration of people with intellectual disabilities, while in reality the neighbours are very positive. More than half of the DSPs were uncertain about the family members’ opinions about integration. Asking the family members themselves, there was some variation in their attitudes toward integration. Regarding the meta-evaluation, DSPs had a realistic idea about how their work would be evaluated by family members and neighbours; both groups were positive. It is evident that this group of DSPs had an overly negative idea of neighbours' opinions about integration and contact with people with intellectual disabilities. Creating awareness of a supportive social norm in the neighbourhood could help and encourage DSPs to strive for social contact between their clients and neighbours. (Edited publisher abstract)
The prevalence of child sexual abuse in out-of-home care: increased risk for children with a mild intellectual disability
- Authors:
- EUSER Saskia, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(1), 2016, pp.83-92.
- Publisher:
- Wiley
Background: This study examined the year prevalence of child sexual abuse (CSA) in Dutch residential and foster care with a mild intellectual disability, and compared it with the prevalence in out-of-home care for non-disabled children and children in the general population. Materials and Methods: Professionals (N = 104) from out-of-home care facilities reported cases of CSA that occurred in 2010 for the children they worked with (N = 1650). Results: In out-of-home care for children with a mild intellectual disability, 9.8 per 1000 children were victims of CSA. This prevalence was significantly higher than in regular out-of-home care and in the general population. Conclusion: Children with a mild intellectual disability in out-of-home care have an increased risk of CSA. Adequate education and support for both children and caregivers is necessary to recognize and prevent further sexual abuse. (Edited publisher abstract)
Quality of diagnosis and treatment plans after using the ‘diagnostic guideline for anxiety and challenging behaviours’ in people with intellectual disabilities: a comparative multiple case study design
- Authors:
- PRUIJSSERS Addy, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 29(4), 2016, pp.305-316.
- Publisher:
- Wiley
Background: People with intellectual disabilities often have a multitude of concurrent problems due to the combination of cognitive impairments, psychiatric disorders (particularly anxiety) and related challenging behaviours. Diagnoses in people with intellectual disabilities are complicated. This study evaluates the quality of the diagnoses and treatment plans after using a guideline that was developed to support professionals in their diagnostic tasks. Materials and Methods: A comparative multiple case study with an experimental and control condition, applying deductive analyses of diagnoses and treatment plans. Results: The analyses revealed that the number of diagnostic statements and planned treatment actions in the experimental group was significantly larger and more differentiated than in the control condition. In the control group, consequential harm and protective factors were hardly mentioned in diagnoses and treatment plans. Conclusions: Working with the ‘Diagnostic Guideline for Anxiety and CB’ leads to improved diagnoses and treatment plans compared with care as usual. (Publisher abstract)
Development of self-help, language, and academic skills in persons with Down syndrome
- Authors:
- DE GRAAF Gert, DE GRAAF Erik
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 13(2), 2016, p.120–131.
- Publisher:
- Wiley
Using visual analysis by means of scatterplots, correlational analysis, and linear regressions, the authors explored the skills of individuals with Down syndrome in the areas of self-help, language, academics, and computer skills. By combining data of several Dutch studies, they obtained 1,252 different observations made by parents on 862 individuals, aged <1–35 years. Research shows advancement in language skills up to the age of 12, with plateauing afterward. In contrast, self-help skills still increase in adolescence and young adulthood. Academics and computer skills improve up to the age of 14. However, less developed academic skills (and computer skills) of adolescents and young adults appear to be a generational difference, rather than a loss of acquired skills. In their analysis, the authors differentiated between students with a primarily regular school career vs. those with a primarily special school career. In addition, in both groups, the studies were differentiated between students with an IQ >50 vs. an IQ between 35 and 50. The comparison between the various subgroups revealed that children with special education backgrounds in the higher IQ range demonstrated less advanced academic skills than children with regular education backgrounds in the lower IQ range. This suggests that regular education is more stimulating for academic skill development. Using age, “school career,” and IQ (<35; 35–50; 50–60; 60–70; >70) as predictors, regressions confirmed this conclusion. The authors conclude that their analyses show that the shift in the early 1990s in the Netherlands toward more inclusion in education for students with Down syndrome has led to better outcomes in academic skill development for these students. (Publisher abstract)
Comprehension of pictograms for pain quality and pain affect in adults with Down syndrome
- Authors:
- DE KNEGT Nanda C., et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 41(3), 2016, pp.222-232.
- Publisher:
- Taylor and Francis
Background: Adults with Down syndrome (DS) are at risk for age-related painful physical conditions, but also for under-reporting pain. Pictograms may facilitate self-report of pain, because they seem suitable for the global visual processing in DS and for iconic representation of abstract concepts. Method: Participants (N = 39, M age = 41.2) assigned pain qualities to pictograms, rated pain affect levels in facial scales (pictograms vs. drawn faces), and performed cognitive tests. Results: Recognition of all intended pain qualities was above chance level. Pain affect levels of both facial scales were ordered equally well. Both facial scales were preferred equally well. Comprehension of the 3 scales was positively associated with mental age, receptive language ability, and verbal memory. Most participants (74%) had pictograms in their direct environment, mainly to communicate activities or objects. Conclusion: Using pictograms may optimise communication about pain for a subgroup of cognitively higher functioning adults with DS. (Edited publisher abstract)
Personalization, self-advocacy and inclusion: an evaluation of parent-initiated supported living schemes for people with intellectual and developmental disabilities in the Netherlands
- Authors:
- REINDL Marie-Sol, WALTZ Mitzi, SCHIPPERS Alice
- Journal article citation:
- Journal of Intellectual Disabilities, 20(2), 2016, pp.121-136.
- Publisher:
- Sage
- Place of publication:
- London
This study focused on parent-initiated supported living schemes in the South of the Netherlands and the ability of these living schemes to enhance participation, choice, autonomy and self-advocacy for people with intellectual or developmental disabilities through personalized planning, support and care. Based on in-depth interviews with tenants, parents and caregivers, findings included that parent-initiated supported housing schemes made steps towards stimulating self-advocacy and autonomy for tenants. However, overprotective and paternalistic attitudes expressed by a significant number of parents, as well as structural constraints affecting the living schemes, created obstacles to tenants’ personal development. The study calls for consideration of interdependence as a model for the relationship of parents and adult offspring with disabilities. The benefits and tensions inherent within this relationship must be taken into consideration during inclusive community building. (Edited publisher abstract)
Does the severity of disability matter? the opinion of parents about professional support in residential facilities
- Authors:
- LUIJKX Jorien, BRUG A.Ten, VLASKAMP C.
- Journal article citation:
- Child: Care, Health and Development, 42(1), 2016, pp.8-15.
- Publisher:
- Wiley
Researchers have shown that the characteristics of a person with an intellectual disability (ID), in particular the severity of the disability, are related to the outcomes of professional support. Hardly any studies have asked parents and/or legal guardians for their own opinion about the quality of support given to their child/family member with ID. Therefore, this study examined the relationship between the severity of a person's disability and the opinions voiced by the parents and/or other legal guardians of that person concerning several aspects of the quality of support received in residential care. (Publisher abstract)
A comparison of support for two groups of young adults with mild intellectual disability
- Authors:
- SOENEN Sarah, BERCKELAER-ONNES Ina van, SCHOLTE Evert
- Journal article citation:
- British Journal of Learning Disabilities, 44(2), 2016, pp.146-158.
- Publisher:
- Wiley
Young adults with mild to borderline intellectual disability (MBID) have varying profiles of cognitive, adaptive and behavioural functioning. There is also variability in their educational and therapeutic needs. This study compares recommended and actual provision of support for two groups of young adults with MBID and looks at young adults’ satisfaction with their support. Participants’ clinical files were analysed and a satisfaction interview was administered. Descriptive statistics were used to characterise the groups, and t-tests or chi-square tests were used to explore similarities and differences between the groups. A combined, supported independent living setting, a structuring and regulating support style and psychotherapy were recommended for the young adults in group 1 (MBID with externalising behavioural problems), whilst independent living with access to community support services and a meeting house, and skills training was recommended for group 2 (MBID with internalising behavioural problems). Both groups were considered capable of standard employment with support from a job coach. The authors found mismatches between recommended and actual provision of support. The findings suggest that service providers do not focus enough on the educational support needs, but therapeutic needs are generally more often met. (Edited publisher abstract)