Family Role in the Development of Self-Determination for Youth With Intellectual and Developmental Disabilities: A Scoping Review

The development of self-determination is promoted by supportive contexts during adolescence; families are a key part of this context. In adolescent populations, research suggests families can support self-determination in a number of ways, yet less is known about how self-determination is promoted within families of youth with intellectual and developmental disabilities (IDD). To address this knowledge gap, we conducted a scoping review to examine the existing evidence pertaining to the role families of youth with IDD play in supporting the development of self-determination. A review of 24 publications revealed that existing research has focused on understanding family perspectives on self-determination, but there is a lack of studies investigating how families provide supports for self-determination in the home context for youth with IDD. Additionally, little intervention work has focused on supporting families to promote self-determination. Based on the findings, implications for future research and practice are provided.

Potential Side Effects and Adverse Events of Antipsychotic Use for Residents With Dementia in Assisted Living: Implications for Prescribers, Staff, and Families

Antipsychotic medications are frequently prescribed to assisted living (AL) residents who have dementia, although there is a lack of information about the potential side effects and adverse events of these medications among this population. Oversight and monitoring by family members is an important component of AL care, and it is important to understand family awareness of antipsychotic use and reports of potential side effects and adverse events. This cross-sectional, descriptive study of family members of 283 residents with dementia receiving antipsychotic medications in 91 AL communities found high rates (93%) of symptoms that could be potential side effects and a 6% rate of potential adverse events. The majority of families were aware their relative was taking an antipsychotic. Findings suggest that obtaining family perspectives of potential side effects and adverse events related to medication use may contribute to overall improvement in the safety of AL residents living with dementia.

Parent and family perspectives on engagement: Lessons from the early years

This study identifies parent and family perspectives of the strengths of early years programs in three communities in Ontario, Canada. Using an Appreciative Inquiry approach, focus groups and surveys with parents, we investigate parent engagement and perceived outcomes of early years services in Ontario’s Best Start demonstration communities. The research study is grounded in the literature on family-centered practice, parent engagement and child outcomes from family participation. The major findings of the study include an extremely high rate of satisfaction with Best Start programs and services. Parents and families identify relationships with staff, access, and a wide range of programs as being critical for their engagement. In addition, the outcomes from early years programs and services go beyond child development and include direct benefits for the parents and families.