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Emma Scripps; Daniel Sutherland; Peter E. Langdon; Richard P. Hastings; Kylie M. Gray – Journal of Applied Research in Intellectual Disabilities, 2025
Background: This review aimed to synthesise the literature about interventions for parents of adolescents with intellectual disability, including parental experience of receiving interventions and intervention effectiveness. Methods: Eligible interventions aimed to improve parenting skills and/or parent-adolescent relationships, adolescent…
Descriptors: Parents, Parent Child Relationship, Adolescents, Intellectual Disability
Jane Lunding Larsen; Helena Hansson; Anne-Marie Bisgaard; Michelle Stahlhut – Journal of Applied Research in Intellectual Disabilities, 2024
Background: Rett syndrome (RTT) causes multiple disabilities with a lifelong need for substantial care, placing a tremendous lifelong responsibility on the parents. Parenting an individual with RTT can therefore be challenging. Research on the psychological aspects of parenting individuals with RTT is limited and unclear. We aimed to identify and…
Descriptors: Parents, Disabilities, Parent Attitudes, Psychological Characteristics
Cwirynkalo, Katarzyna; Parchomiuk, Monika – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Many fathers with intellectual disabilities experience some difficulties in fulfilling their parenting role due external factors. The quality of their parenting depends on various factors, including the availability and adequacy of support. The aim of this study was to understand the lived experiences associated with social support of…
Descriptors: Fathers, Parents with Disabilities, Intellectual Disability, Experience
Gibson, Cheryl A.; Sullivan, Debra K.; Ptomey, Lauren T.; Rice, Anna M.; Donnelly, Joseph E. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Adolescents and young adults with intellectual and developmental disabilities are at risk of obesity. Parents influence their diet and physical activity behaviours and therefore, can play important roles in weight management. The aims of this qualitative study were to explore parents' experiences assisting their son or daughter to…
Descriptors: Parents, Intellectual Disability, Developmental Disabilities, Body Weight
Sanderson, Kelli A.; Aquino, Michael D. – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Natural supports are widely used by adults with intellectual and developmental disabilities. However, little research has been conducted on this topic. This study adds to the literature by examining the role of parents as natural supporters, other members of the natural support network, challenges families face as they secure natural…
Descriptors: Parents, Adults, Intellectual Disability, Developmental Disabilities
Rooney, James; Hodge, Rebecca; Smith, Jade; Vanstone, Kelly; Laugharne, Richard; Shankar, Rohit – Journal of Applied Research in Intellectual Disabilities, 2023
Background: Constipation is common in children with intellectual disabilities and/or autism, but poorly researched. This study looks to understand parental knowledge, attitudes and management practices towards constipation in children with intellectual disabilities and/or autism. Methods: A cross-sectional online survey developed with patient…
Descriptors: Parents, Children, Intellectual Disability, Autism Spectrum Disorders
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
Forslund, Tommie; Fernqvist, Stina; Tegler, Helena – Journal of Applied Research in Intellectual Disabilities, 2022
Background: Parents with intellectual disability are vulnerable to parenting stress and overwhelming life events. The COVID-19 pandemic constitutes a potentially overwhelming event, but there is little knowledge concerning the effects on parents' caregiving. The present study aimed to fill this gap. Method: Semi-structured interviews with 10…
Descriptors: Parents, Intellectual Disability, Child Rearing, Stress Variables
Karine Baumstarck; Sibylle Del Duca; Houria El Ouazzani; Ilyes Hamouda; Any Beltran Anzola; Marie-Anastasie Aim; Marie-Christine Rousseau – Journal of Applied Research in Intellectual Disabilities, 2025
Background: Advancements in medicine have increased the life expectancy of the people with profound intellectual and multiple disabilities. The hypothesis is that as parents get older, they worry about no longer being there for their child. This paper explores the extent to which the experiences of older parents may differ from that of younger…
Descriptors: Quality of Life, Severe Disabilities, Multiple Disabilities, Intellectual Disability
Ljungberg, Malin; Schön, Ulla-Karin – Journal of Applied Research in Intellectual Disabilities, 2023
Background: The autistic population is growing and ageing and this also applies to the parents. Despite this, research about parental experiences is still relatively scarce. Even though studies show, compared with adults with other disabilities, parents of autistic adolescents and adults report a decrease in well-being and that caregiving is often…
Descriptors: Autism Spectrum Disorders, Parents, Aging (Individuals), Well Being
Susanty, Dessy; Noel, Pia; Sabeh, Meta Saraswati; Jahoda, Andrew – Journal of Applied Research in Intellectual Disabilities, 2021
Background: Evidence and awareness of the importance of culturally adapting psychosocial interventions is growing. The aim of this paper is to systematically review studies on cultural adaptations of psychosocial interventions for parents and their children with intellectual disabilities, in low- and middle-income countries. Methods: Studies were…
Descriptors: Intellectual Disability, Children, Parents, Intervention
Kurtek, Pawel – Journal of Applied Research in Intellectual Disabilities, 2020
Although interactions among parents and Youth with Mild Intellectual Disability (MID) may be stressful at times, most studies focus on the effects of stressful interactions on the parents. This study considers the Youth's perspective -- particularly their beliefs about the reason for the parent's actions as well as how they would respond in the…
Descriptors: Parents, Mild Intellectual Disability, Youth, Attribution Theory
Morin, Marjorie; Rivard, Mélina; Morin, Diane; Mello, Catherine; Coulombe, Patrick – Journal of Applied Research in Intellectual Disabilities, 2022
Background: A large body of evidence suggest that parents of young children with autism spectrum disorder or intellectual disability experience low levels of satisfaction with the diagnostic evaluation process. This study sought to document parents' satisfaction with the services of a pilot clinic implemented in Québec, Canada. Method: Two-hundred…
Descriptors: Parents, Satisfaction, Young Children, Autism
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
Gil-Llario, María Dolores; Fernández-García, Olga; Flores-Buils, Raquel; Huedo-Medina, Tania B.; Morell-Mengual, Vicente; Ballester-Arnal, Rafael – Journal of Applied Research in Intellectual Disabilities, 2023
Background: A positive conception of sexuality among people with intellectual disabilities is crucial and relies on several social and interpersonal contexts. The goal of this study is to analyse the interaction and impact of three different contextual groups: individuals with intellectual disabilities, their parents, and professionals working…
Descriptors: Intellectual Disability, Sexuality, Attitudes, Adults