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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.
The effect of diagnostic label on care staff's perceptions of cause of challenging behaviour in individuals with learning disabilities
- Authors:
- GIFFORD Clive, KNOTT Fiona
- Journal article citation:
- British Journal of Learning Disabilities, 44 (4), 2016, pp.322-328.
- Publisher:
- Wiley
Background: This study investigated whether care staff's causal attributions and emotional reactions to the challenging behaviour displayed by service users were influenced by the service user's diagnostic label. Materials and Method: One hundred and twenty care staff were randomly allocated to one of three conditions. Participants viewed a video of a senior staff member describing a service user, varying only in diagnostic label (autism, learning disability or Down syndrome). Participants then rated their endorsement of possible causes and emotional reactions to challenging behaviour. Results: Participants in the autism and Down syndrome groups made more use of biomedical causes and less use of learned behaviour as an explanation for challenging behaviour than those in the learning disabilities group. Those in the former groups reported more positive and fewer negative emotions than those in the learning disabilities group. Conclusions: The way staff viewed people with learning disabilities was affected by their diagnostic label. Implications for further research and training have been discussed. (Edited publisher abstract)
Dementia in older adults with intellectual disabilities: epidemiology, presentation and diagnosis
- Authors:
- STRYDOM Andre, et al
- Journal article citation:
- Journal of Policy and Practice in Intellectual Disabilities, 7(2), June 2010, pp.96-110.
- Publisher:
- Wiley
The authors conducted a literature review on the epidemiology, presentation and diagnosis of dementia in older adults with intellectual or learning disabilities (ID) and specific genetic syndromes, such as Downs syndrome (DS) using Medline, EMBASE and PsycINFO for original papers in English, German or Dutch, between 1997 and 2008. Articles from the United Kingdom, Canada, Australia, United States, Netherlands, Ireland; Japan, South Africa, Scandinavia and Italy had varied methodologies and differences in diagnoses resulting in a wide range of prevalence rates of dementia. Rates of dementia in those with ID, not because of DS, were comparable or higher than those in the general population. The onset of Alzheimers disease in DS appears earlier and the prevalence increases from less than 10% in the 40’s, to more than 30% in the 50’s with varying prevalence reported in those over 60 years. Incidence rates increased with age. Presentation differs in the ID population compared with the general population, with those with DS presenting with behavioural changes believed to be due to frontal lobe deficits. Few studies of dementia in other genetic syndromes such as Rett syndrome, an autistic spectrum disorder, and Sanfilippo syndrome were located in the literature, but these are discussed and tabulated along with others found.
Eating behaviour and food choices in children with Down’s syndrome, autistic spectrum disorder or cri du chat syndrome and comparison groups of siblings: diet and preventive dentistry
- Authors:
- COLLINS Margaret S. R., et al
- Journal article citation:
- Journal of Learning Disabilities, 8(4), December 2004, pp.331-350.
- Publisher:
- Sage
High sugar foods and beverages consumed frequently are associated with increased dental caries and periodontal disease. Based on parental survey responses, the diets of children with Down’s syndrome, autistic spectrum disorder (ASD) and cri du chat syndrome and comparison groups of siblings were considered from an oral health perspective. In each group children who were frequent consumers of one high sugar food or beverage were likely to be high consumers of others, whilst other children were low consumers of high sugar foods and beverages. Children in middle and late childhood tended to consume more cariogenic foods and beverages than preschool children. For most children frequency of meal and snack consumption would allow little opportunity for remineralization of teeth.
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)
The experiences of mothers of young adults with an intellectual disability transitioning from secondary school to adult life
- Authors:
- DYKE Paula, et al
- Journal article citation:
- Journal of Intellectual and Developmental Disability, 38(2), 2013, pp.149-162.
- Publisher:
- Taylor and Francis
The transition from school to adulthood for young adults with an intellectual disability involves movement from a generally secure and supported school environment to an emerging adult life that may be characterised by a wide variation in adoption of adult roles related to employment, independent living, friendships, and day activities. The perspectives of 18 mothers of young adults with either Down syndrome or Rett syndrome were analysed through qualitative semistructured interviews. The International Classification of Functioning, Disability and Health (ICF) framework was used as a conceptual basis. Themes that emerged included adult roles assumed during the day, accommodation, quality of life, living a “good” life, and family impact. In contrast with Rett syndrome, mothers of young adults with Down syndrome described more difficult pathways to attaining stability in adult roles. Environmental facilitators and barriers emerged in the area of support, relationships, services, systems, and policies. (Edited publisher abstract)
The child with special needs: encouraging intellectual and emotional growth
- Authors:
- GREENSPAN Stanley, WIEDER Serena, SIMONS Robin
- Publisher:
- Perseus
- Publication year:
- 1998
- Pagination:
- 496p.bibliog.
- Place of publication:
- Cambridge, MA
Presents a guide to raising a child with special needs. In this essential work they lay out a complete, step-by-step approach for parents, educators, and others who work with developmental problems. Covering all kinds of disabilities, including autism, PDD, language and speech problems, Down syndrome, cerebral palsy, and ADD - the authors offer a new understanding of the nature of these challenges and also specific ways of helping children extend their intellectual and emotional potential.
Gap analysis of service needs for adults with neurodevelopmental disorders
- Author:
- BURKE Shanna L.
- Journal article citation:
- Journal of Intellectual Disabilities, 23(1), 2019, pp.97-116.
- Publisher:
- Sage
- Place of publication:
- London
In Florida, the Agency for Persons with Disabilities provides waivers for adults with the following types of disabilities: intellectual disability, autism spectrum disorder, cerebral palsy, spina bifida, Down syndrome, and Prader–Willi syndrome. This review examined the peer-reviewed literature to indicate and assess the common needs for individuals with intellectual and developmental disabilities. Current models of service delivery, the efficacy of these services, and remaining gaps in the need fulfilment of individuals within the six diagnostic categorizations of interest were examined. Severity level within each diagnostic category was plotted on a matrix according to whether the needs of individuals were minimal, moderate, severe, or universal. The study found that sexual health education, socialization, and adult-focused medical care are universal needs among the six conditions. The study indicates that health-care professionals must work toward addressing the many unmet needs in comprehensive life span care services for adult individuals with neurodevelopmental disorders. (Edited publisher abstract)
Comparing differences in support needs as perceived by parents of adult offspring with down syndrome, autism spectrum disorder and cerebral palsy
- Authors:
- LEE Chung eun, et al
- Journal article citation:
- Journal of Applied Research in Intellectual Disabilities, 32(1), 2019, pp.194-205.
- Publisher:
- Wiley
Background: Parents often face many barriers when taking care of their offspring with disabilities. In childhood, support needs vary with families of children with Down syndrome often reporting less caregiving challenges. However, it is unclear whether support needs vary in adulthood. This study compared parents of adults with Down syndrome (DS), autism spectrum disorder (ASD) and cerebral palsy (CP) regarding support needs of their offspring with intellectual and developmental disabilities (IDD) and their families. Method: Data were collected via a national survey in the United States with 189 parents of adults with IDD. Results: Across the quantitative and qualitative analyses, parents of adults with DS (versus CP and ASD) reported significantly greater recreational, natural supports, more formal services and less future planning barriers. Conclusion: The results indicate that the DS advantage may persist in adulthood regarding support needs. More research is needed to understand different types of support needs. (Edited publisher abstract)
Coping with the usual family diet : eating behaviour and food choices of children with Down's syndrome, autistic spectrum disorders or cri du chat syndrome and comparison groups of siblings
- Authors:
- COLLINS Margaret S. R., et al
- Journal article citation:
- Journal of Learning Disabilities, 7(2), June 2003, pp.137-155.
- Publisher:
- Sage
Children with learning disabilities have increased risk of delayed development of oral-motor, feeding and social skills. Questionnaires on the eating behaviour of children 2 to 18 years of age with Down's syndrome, autistic spectrum disorders (ASD) and cri du chat syndrome and their siblings were completed by their parents. Most children including the preschool children were reported to have some level of self-feeding skills. Chewing problems were reported for some children in all age groups, including not only children with a syndrome but also siblings of children with Down's syndrome and ASD. The lack of chewing skills resulted in parents feeding pureed or mashed food to their children. As no child in the study was under 2 years, the reported feeding skills were at best delayed and at worst deviant. Behavioural problems at meals and with diet were common, particularly in children with syndromes and especially in early childhood.