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Relationship between Affiliate Stigma, Stress and Perceived Quality of Life among Parents of Children with Down Syndrome
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Shin Ying Chu; Jaehoon Lee; Dini Sofea Binti Zamsyari; Chun Hong Gan; Pui Juan Woi; Agnes Shu Sze Chong; Maria Garraffa; Ling-Yi Lin – Journal of Applied Research in Intellectual Disabilities, 2025
Background: To examine the relationship between affiliate stigma, stress and perceived quality of life amongst parents of children with Down syndrome (DS). Method: Seventy-eight parents of children with DS completed the Affiliate Stigma Scale (ASS), Caregiver Burden Inventory (CBI) and Care-related Quality of Life (CarerQol) scales. Results:…
Descriptors: Attitudes toward Disabilities, Social Bias, Stress Variables, Quality of Life
Indicators of Health in Down Syndrome: A Virtual Focus Group Study with Patients and Their Parents
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Santoro, Stephanie L.; Cabrera, Maria J.; Haugen, Kelsey; Krell, Kavita; Merker, Vanessa L. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Down syndrome has a unique medical and psychological profile. To date, few studies have asked individuals with Down syndrome about their views of health. Methods: Eight focus groups of 20 parents and 8 individuals with Down syndrome, were conducted virtually via videoconferencing to obtain participants' views of health indicators.…
Descriptors: Down Syndrome, Parents, Attitudes, Physical Health
Relationships between Feeding Problems, Eating Behaviours and Parental Feeding Practices in Children with Down Syndrome: A Cross-Sectional Study
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Rogers, Samantha L.; Smith, Bobbie; Mengoni, Silvana E. – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Research investigating feeding problems in children with Down syndrome is scarce. This study investigated feeding problems, eating behaviours and parental feeding practices in children with Down syndrome (n = 40), and typically developing (TD) children of the same age and sex (n = 40). Method: Parents of children aged 6-months to…
Descriptors: Down Syndrome, Foreign Countries, Young Children, Parents
Encounters with Public and Professional Understandings of Down Syndrome: A Qualitative Study of Parents' Experiences
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Ellen H. Steffensen; Stephanie L. Santoro; Lars H. Pedersen; Ida Vogel; Stina Lou – Journal of Applied Research in Intellectual Disabilities, 2024
Background: The meanings of neurodevelopmental conditions are socially and culturally defined. We explored how parents of a child with Down syndrome experienced public and professional understandings of Down syndrome. Method: Qualitative interviews with 25 parents of a child with Down syndrome living in Denmark. From a reflexive thematic analysis,…
Descriptors: Down Syndrome, Parents, Professional Personnel, Knowledge Level
Destination Unknown: Parents and Healthcare Professionals' Perspectives on Transition from Paediatric to Adult Care in Down Syndrome
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Peters, Vincent J. T.; Bok, Levinus A.; de Beer, Lieke; Rooij, Joyce J. M.; Meijboom, Bert R.; Bunt, Jan Erik H. – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Transitioning from paediatric medical care to adult care is a challenging process for children, parents and healthcare professionals. The aim of this study was to explore the experiences, concerns and needs of parents of children with Down syndrome and of professionals regarding this transition. Method: A qualitative study was…
Descriptors: Down Syndrome, Parents, Health Personnel, Parent Attitudes
Comparing Differences in Support Needs as Perceived by Parents of Adult Offspring with Down Syndrome, Autism Spectrum Disorder and Cerebral Palsy
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Lee, Chung eun; Burke, Meghan M.; Arnold, Catherine K.; Owen, Aleksa – Journal of Applied Research in Intellectual Disabilities, 2019
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),…
Descriptors: Barriers, Down Syndrome, Adults, Autism
Comparing Parental Stress of Children with Neurodevelopmental Disorders: The Case of Williams Syndrome, Down Syndrome and Autism Spectrum Disorders
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Ashworth, Maria; Palikara, Olympia; Van Herwegen, Jo – Journal of Applied Research in Intellectual Disabilities, 2019
Background: Although parental stress is higher for children with neurodevelopmental disorders (NDs), it is unclear how this stress compares to more common NDs. The current study compared stress in parents of children with Williams syndrome (WS), Down syndrome (DS) and autism spectrum disorders (ASD). The impact of individual and contextual factors…
Descriptors: Developmental Disabilities, Neurological Impairments, Autism, Pervasive Developmental Disorders
Physical Activity Engagement in Young People with Down Syndrome: Investigating Parental Beliefs
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Alesi, Marianna; Pepi, Annamaria – Journal of Applied Research in Intellectual Disabilities, 2017
Background: Despite the wide documentation of the physical/psychological benefits derived from regular physical activity (PA), high levels of inactivity are reported among people with Down syndrome. Method: Semi-structured interviews were conducted with 13 parents of young people with Down syndrome. Results Three facilitation themes were…
Descriptors: Down Syndrome, Physical Activity Level, Life Style, Semi Structured Interviews