Background: Many parents are the primary caregivers for their adult children with intellectual and/or developmental disabilities. While there can be many benefits of caregiving, there can also be negative consequences for the parent caregiver and, in turn, for their adult child with intellectual and/or developmental disabilities. Given the…

Background: Long-term care planning (LTCP) is critical for individuals with intellectual/developmental disabilities. Objectives of this study were to investigate progression through LTCP, and associations between social support and: (1) LTCP and (2) burden among family caregivers. Methods: A cross-sectional survey was distributed to caregivers of…

This qualitative study used an inclusive and participatory research approach to examine the perspectives of people with intellectual and developmental disabilities (IDD) on instrumental supports. Instrumental supports include concrete and direct ways people assist others in solving a problem or accomplishing a task, including helping to access and…

This article explores the role of formal and informal supports for women with intellectual and developmental disabilities (IDD) throughout their pregnancy, childbirth, and postpartum experiences. Data from qualitative interviews with women with IDD (n = 16) were analyzed. Results showed that formal supports aided in planning, transportation,…

Background: Long-term care services are funded primarily by Medicaid long-term services and support in the United States, where eligibility is based on care needs of the individual with intellectual and developmental disability alone. Impact of Medicaid waiver services on self-reported caregiver needs is not well understood. Method: Caregivers (n…

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…

We examined differences in the social networks, social supports, and college-related anxiety and distress between 42 college students in a traditional degree-seeking (TDS) program and an inclusive postsecondary education (IPSE) program at the same campus. Our findings revealed that IPSE students had smaller, denser social networks predominantly…

Supportive, informed parenting is critical to improve outcomes of children who experience intellectual and developmental disabilities (IDD). Parents want to learn about their child's condition, needs, and strategies to improve family life. The internet is a valuable resource, but how parents evaluate and apply information is unknown. We conducted…

Background and Aims: Siblings play a crucial role in shaping and guiding the experiences of their brother or sister with a disability across the lifespan. However, little is known about the positive outcomes of their roles and experiences as siblings. Understanding the positive outcomes challenges stereotypes and the stigma associated with…

Background: Within Family Quality of Life (FQoL) research, perceptions of siblings of people with intellectual and developmental disabilities (IDD) in the setting of a family are limited studied. The aim of this systematic review is to find relevant information about quality of life perceptions of siblings of people with IDD. Two main questions…

Background: Early Positive Approaches to Support (E-PAtS) is a co-produced and co-facilitated group programme that aims to provide early years support to family caregivers of children with Intellectual and Developmental Disabilities. Method: Thirty-five caregivers who had attended E-PAtS groups took part in individual interviews or focus groups.…

Introduction: This study examined factors that predict stress level and life satisfaction among adults with intellectual or developmental disabilities during the COVID-19 pandemic and the role of social support. Method: From a larger study about the experiences during the pandemic of 2028 individuals with and without disabilities, 181 adults with…

Studies on the COVID-19 pandemic highlight detrimental effects of social distancing on mental health. These effects were also observed among caregivers of people with intellectual and developmental disabilities (IDD), who undergo particular challenges in this context. This study aimed to identify the coping strategies adopted by caregivers of…

Background: Compared to the general population, individuals with intellectual and developmental disabilities (IDD) more often experience bullying and its negative social and emotional impacts. Prior studies explored bullying of individuals with IDD primarily through investigations of the perspectives of others and the negative impacts of bullying.…

The purpose of this study was to interview parents of children with severe or profound intellectual and developmental disabilities to determine the perceived value of support groups and identify recommendations for support group design based on their experiences and feedback. Despite varied experiences with support groups, most parents indicated…