Background: Despite humanistic declarations regarding the rights of people with intellectual disability to live a full, meaningful life, in practice, resulting from dilemmas experienced by direct support provides, support is often limited to a focus on functional independence. The aim of this research was to define the theoretical principles by…

Background and aims: Caregiver-delivered programs are a recommended best practice to support young autistic children. While research has extensively explored children's outcomes quantitatively, minimal qualitative research has been conducted to understand caregivers' perspectives of program outcomes for themselves and their children. Hearing…

Using dyadic youth-adult interviews, the current study explored characteristics, benefits, and challenges of supportive youth-adult relationships for youths living in neighborhoods with high levels of community violence. Thirty-two dyads of youths between the ages 13 to 21 years (63% female, 88% Black) and their self-identified key adult supports…

This generic qualitative study aimed to explore the experiences of African American caregivers supporting their children to graduate from high school. In this study, there was a gap in the literature regarding parental support of African American children graduating from high school. Addressing this dearth of literature entailed answering the…

Resilience in families of autistic children and children with intellectual disability is associated with factors such as family functioning, social support, and financial strain. Little is known about family resilience during the COVID-19 pandemic when many resources were limited. This study examined the association of family resilience with child…

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…

In the spring of 2022, six "caregivers," defined in the loosest of parameters as one who "is" providing or "has" provided care for an ill individual, participated in a five-week residency that utilized storytelling as a processing tool to cope with the demands of caregiving. To balance the importance of remaining…

Caregivers can experience significant challenges following their child's autism diagnosis and often seek informational, relational and emotional support. Post-diagnostic support for caregivers has received relatively little research attention and represents a significant gap in the international evidence base. We used an iterative codesign process…

Background: Systematic knowledge about stroke adaptation can be a useful tool to develop evidence-based policies and practices centered on survivors and informal caregivers. Purpose: This scoping review summarizes the body of knowledge about the adaptation processes after stroke. Methods: Based on PRISMA-ScR guidelines, databases were searched, in…

Background: There are increasing numbers of ageing family carers of older (40+) adults with intellectual disabilities who convey behaviours that challenge others in the UK. It is important to understand the needs and experiences of these carers as they support their older family member to transition to different care contexts. Method: A rapid…

Background: Support from staff plays an important role in quality of life for people with intellectual disability. This study focuses on service users' views of Active Support as good support and whether Active Support increases the quality of everyday support in group homes. Method: Nine service users were interviewed at baseline and at follow-up…

We conducted formative research to inform the creation of innovative new tools and strategies to engage professionals in communicating with youth with intellectual disabilities about sexual health. The research was guided by a multidisciplinary network of experts and an advisory board of self-advocates with intellectual disabilities and caregivers…

Although caregiving responsibilities and need for support persist and evolve across the life course in families with autistic youth or youth with other developmental disabilities (DDs), little is known about support during their child's adulthood years. Therefore, the present study used a mixed-methods approach to examine change and stability in…

A select few African American families who have a child with a disability have the skills and knowledge to be proactive in the special education process. Special education teams must guide and mentor African American students and their families through the special education process. However, African American families have consistently contended…

Primary informal caregivers perform most of the caring work with no financial compensation and often no training, experiencing the burden of care. Unless their socioeconomic status allows them to hire a formal caregiver for their care recipients or use healthcare facilities, they need to spend their opportunity cost to take care of their care…