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Kasey E. Bedard; Annette K. Griffith; Delyla Ulm; Mary Strittman; Kelly Krukowski; Angeline Eaton; Amanda Rone; Teresa Cardon – Journal of Positive Behavior Interventions, 2025
PWS Smart-Start is a behavioral caregiver training program developed specifically for caregivers of children with Prader-Willi syndrome (PWS) ages 3 to 14. The purpose of the current study was to evaluate the acceptability and preliminary efficacy of the program. Thirty-four caregivers of children with PWS received the PWS Smart-Start training…
Descriptors: Caregiver Training, Early Adolescents, Genetic Disorders, Program Effectiveness
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Pari, Elisa; Cozzi, Francesca; Rodocanachi Roidi, Marina Luisa; Grange, Francesca; Toshimori, Kumiko; Ripamonti, Enrico – Journal of Applied Research in Intellectual Disabilities, 2020
Background: Although lives of parents of girls with Rett syndrome (RTT) are centred on the process of care, in the current literature their perceived levels of stress have been rarely investigated. Methods: We analysed levels of stress in a sample of 79 fathers and mothers parenting girls with RTT, who were required to compile the Parenting Stress…
Descriptors: Child Rearing, Caregiver Role, Parent Caregiver Relationship, Females
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Potter, Sarah Nelson; Bullard, Lauren; Banasik, Amy; Tempero Feigles, Robyn; Nguyen, Vivian; McDuffie, Andrea; Thurman, Angela John; Hagerman, Randi; Abbeduto, Leonard – Perspectives of the ASHA Special Interest Groups, 2022
Purpose: This study examined relationships among family characteristics, caregiver change in use of strategies, and child growth in spoken language over the course of a parent-implemented language intervention (PILI) that was developed to address some of the challenges associated with the fragile X syndrome (FXS) phenotype. Method: Participants…
Descriptors: Family Characteristics, Child Language, Oral Language, Intervention
Richardson, Lolita Lisa – ProQuest LLC, 2010
This study investigated the relationship between repetitive behaviors and sensory behavior to the parenting stress of mothers of boys with fragile X syndrome and mothers of boys with autism. Participants consisted of two groups: 51 mothers with boys diagnosed with fragile X syndrome (M = 71.3, SD = 56.5) and 30 mothers with boys diagnosed with…
Descriptors: Mothers, Autism, Child Rearing, Sensory Experience
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Wulffaert, Josette; Scholte, Evert M.; Van Berckelaer-Onnes, Ina A. – Journal of Intellectual & Developmental Disability, 2010
Background: Parenting stress was investigated in mothers with a child with Angelman syndrome (AS) or Prader-Willi syndrome (PWS), which are genetically related. Method: Mothers of 24 children with AS and 23 children with PWS (2-12 years) completed the Nijmegen Parenting Stress Index-Short, Developmental Behaviour Checklist, and Vineland Screener…
Descriptors: Mothers, Mental Retardation, Family Programs, Child Rearing