Lunsky, Yona

Many parents of adolescents and adults with autism spectrum disorder experience difficulty accessing appropriate services for their children, and may report low levels of parent self-efficacy. In an effort to identify the factors that contribute to the difficulties these families face, this study examined the role of demographic, systemic, and clinical need variables as they relate to parents’ experience of self-efficacy. Participants included 324 parents of individuals with autism spectrum disorder, 12–25 years of age.

Background: It is becoming more common for siblings to fulfill a caregiving role for their brother or sister, particularly because people with intellectual/developmental disabilities (IDD) are often living longer and outliving their parents. However, most of what we know about siblings of people with IDD is based on research with children, and limited studies on the adult sibling experiences in Canada have been published. To meet the support needs of Canadian adult siblings, "The Sibling Collaborative", a grass‐roots initiative, conducted a needs assessment.

In some cases, parents caring for an adult child with an intellectual and/or developmental disability (IDD) must balance this with caregiving for another family member. This dual responsibility, referred to as 'compound caregiving', may contribute to increased feelings of distress, or change their perceived ability to care for their child. The current study examined how compound caregivers differ from other parents of adults with IDD, and whether compound caregiving is significantly associated with family distress.

Family carers play an important role supporting individuals with intellectual and developmental disabilities (I/DD) into adulthood. Funders of services often desire this ongoing involvement by family members yet they rarely collect data about family carers. As policy makers and planners are increasingly recognizing the need for information related to indicators of system performance, a scoping review was conducted to identify system-wide information needed about family carers of adults with I/DD that would help improve the quality of service provided.