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Burke, Meghan M.; Lee, Chung eun; Hall, Sarah A.; Rossetti, Zach – Intellectual and Developmental Disabilities, 2019
Many siblings anticipate fulfilling caregiving roles for their brothers and sisters with intellectual and developmental disabilities (IDD). Given these roles and the importance of supported decision making, it is crucial to understand how individuals with IDD and their siblings make decisions. Using dyadic interviews, we examined the perspectives…
Descriptors: Decision Making, Intellectual Disability, Developmental Disabilities, Siblings
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Krueger, Kristen; Cless, Jessica D.; Dyster, Meghan; Steele, Robert; Nelson Goff, Briana S. – Intellectual and Developmental Disabilities, 2019
In the current qualitative research study, we focused on understanding the ecological systems, contexts, behaviors, and strategies of parents (N = 435) advocating for their children with an intellectual and developmental disability diagnosis, specifically Down syndrome (DS). Based on the data analysis, parents of children with DS advocate for…
Descriptors: Parents, Child Advocacy, Down Syndrome, Parent Child Relationship
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Goldman, Samantha E.; Sanderson, Kelli A.; Lloyd, Blair P.; Barton, Erin E. – Intellectual and Developmental Disabilities, 2019
School-home communication is highly valued for parents of students with autism spectrum disorders (ASD) and other developmental disabilities. However, parents report poor communication as a common barrier to developing partnerships with schools. Using a multiple baseline design, we evaluated the effects of a school-home note intervention with…
Descriptors: Family School Relationship, Reinforcement, Parents, Behavior Modification
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Burke, Meghan M.; Chan, Neilson; Neece, Cameron L. – Intellectual and Developmental Disabilities, 2017
Parents of children with (versus without) intellectual and developmental disabilities report greater stress; such stress may be exacerbated by dissatisfaction with school services, poor parent-school partnerships, and the need for parent advocacy. Increasingly, mindfulness interventions have been used to reduce parent stress. However, it is…
Descriptors: Parent Attitudes, Special Education, Anxiety, Stress Management
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Henninger, Natalie A.; Taylor, Julie Lounds – Intellectual and Developmental Disabilities, 2014
When researchers evaluate adult outcomes for individuals with intellectual and/or developmental disabilities (IDD), the perspective of families is not always considered. Parents of individuals with IDD ("N" = 198) answered an online survey about their definition of a successful transition to adulthood. Content analysis was used to…
Descriptors: Mental Retardation, Developmental Disabilities, Online Surveys, Content Analysis
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Nelson Goff, Briana S.; Springer, Nicole; Foote, Laura Cline; Frantz, Courtney; Peak, Madison; Tracy, Courtney; Veh, Taylor; Bentley, Gail E.; Cross, Kayli A. – Intellectual and Developmental Disabilities, 2013
This study explored the preliminary experiences of parents upon learning of their child's diagnosis of Down syndrome. Qualitative data from a web-based, national survey were analyzed based on two groups: prenatal ("n" = 46) or postnatal ("n" = 115) diagnosis. Three primary categories emerged from the data analysis:…
Descriptors: Clinical Diagnosis, Down Syndrome, Children, Disability Identification
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May, Michael E.; Brandt, Rachel C.; Bohannan, Joseph K. – Intellectual and Developmental Disabilities, 2012
Advances in gene-environment interaction research have revealed genes that are associated with aggression. However, little is known about parent perceptions of genetic screening for behavioral symptoms like aggression as opposed to diagnosing disabilities. These perceptions may influence future research endeavors involving genetic linkage studies…
Descriptors: Genetics, Autism, Early Intervention, Parent Attitudes
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Jones, Jennifer L. – Intellectual and Developmental Disabilities, 2012
How one perceives the self is critical to long-term development. The purpose of this study was to explore the self-perceptions of adolescents with intellectual and developmental disabilities. Participants included 51 adolescents with intellectual and developmental disabilities, their parents (n = 50), and teachers (n = 12). A mixed-methods design…
Descriptors: Family Income, Mental Retardation, Developmental Disabilities, Adolescents
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Scotti, Joseph R.; Stevens, Sarah B.; Jacoby, Vanessa M.; Bracken, Magdalene R.; Freed, Rachel; Schmidt, Elizabeth – Intellectual and Developmental Disabilities, 2012
Generally, studies have revealed that only a minority of people are bothered by participation in research on traumatic stress. Severity of traumatic events and subsequent responses are typically unrelated to negative reactions. We included 386 family members and caregivers (respondents) of people with intellectual and developmental disabilities…
Descriptors: Developmental Disabilities, Psychometrics, Caregivers, Mental Retardation
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Golnik, Allison; Maccabee-Ryaboy, Nadia; Scal, Peter; Wey, Andrew; Gaillard, Philippe – Intellectual and Developmental Disabilities, 2012
We assessed the extent to which parents of children with autism spectrum disorder report that they are engaged in shared decision making. We measured the association between shared decision making and (a) satisfaction with care, (b) perceived guidance regarding controversial issues in autism spectrum disorder, and (c) perceived assistance…
Descriptors: Primary Health Care, Parents, Autism, Decision Making
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Glidden, Laraine Masters; Bamberger, Katharine T.; Draheim, Angela R.; Kersh, Joanne – Intellectual and Developmental Disabilities, 2011
Participation in athletics has benefits for persons with intellectual disabilities and their parents. Our purposes here were to confirm these benefits and to determine whether reports from athletes and parents were comparable (i.e., to test the validity of proxy responding). We conducted interviews with 34 Special Olympics sailing/kayaking…
Descriptors: Athletics, Mental Retardation, Athletes, Disabilities
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Neely-Barnes, Susan L.; Graff, J. Carolyn; Roberts, Ruth J.; Hall, Heather R.; Hankins, Jane S. – Intellectual and Developmental Disabilities, 2010
Forty-five parents of children with autism, cerebral palsy, Down syndrome, and sickle cell disease participated in 8 focus groups. Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child's disability. Themes evolving from the interviews included (a) support and lack of support,…
Descriptors: Siblings, Autism, Focus Groups, Attitudes toward Disabilities
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Reilly, Deirdre; Huws, Jaci; Hastings, Richard; Vaughan, Frances – Intellectual and Developmental Disabilities, 2010
Individuals with Down syndrome are at increased risk of congenital heart conditions (CHCs), and mortality is higher in people with Down syndrome and a CHC than those without (J. C. Vis et al., 2009). As a consequence, parents of children with Down syndrome and a CHC are more likely to outlive their child. In this research, semistructured…
Descriptors: Down Syndrome, Parents, Child Rearing, At Risk Persons
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Neece, Cameron L.; Kraemer, Bonnie R.; Blacher, Jan – Intellectual and Developmental Disabilities, 2009
The transition from high school to adulthood is a critical life stage that entails many changes, especially for youth with severe intellectual disability. The transition period may be especially stressful for the families of these young adults, who often experience a sudden change, or decrease, in services. However, little research has examined…
Descriptors: Severe Mental Retardation, Well Being, Young Adults, Parents
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van der Veek, Shelley M. C.; Kraaij, Vivian; Garnefski, Nadia – Intellectual and Developmental Disabilities, 2009
The purpose of this study was to explore the cross-sectional and prospective relationships between cognitive coping strategies and parental stress in parents of children with Down syndrome. A total of 621 participants filled out questionnaires, including the Cognitive Emotion Regulation Questionnaire to measure cognitive coping and the Nijmeegse…
Descriptors: Down Syndrome, Coping, Parents, Questionnaires
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