Baumbusch, Jennifer

A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents' experiences of navigating the healthcare system, a gap we begin to address in this study.

Background : This protocol outlines research to explore family members' and paid staff's perceptions of the impact of COVID-19 on individuals with intellectual and developmental disabilities and their caregivers. Evidence suggests that people with intellectual and developmental disabilities experience disparities in healthcare access and utilisation. This disparity was evident early in the pandemic when discussions arose regarding the potential exclusion of this population to critical care.

Purpose of the Study: To examine the dynamics of caring relations in older families that include an adult with Intellectual Disabilities (ID). To date, there has been very little research exploring the experiences of aging families of community-dwelling adults with ID.

Immigrant older adults are increasingly moving into long term residential care (LTRC) homes; however, most were designed and continue to be run in accordance with Anglocentric norms and values. Participation and interest in Family Councils—through which they might collectively voice concerns—was low within our purposive sample of nine Chinese-origin residents living in LTRC homes and 11 family carers.

Background: Transcatheter aortic valve implantation (TAVI) is the treatment of choice for frail, older adults with severe symptomatic aortic stenosis. Although research about long-term clinical outcomes is emerging, there is limited evidence from the perspectives of patients and family caregivers on their perceived benefits and challenges after TAVI. Aims: The aim of this study was to describe older adults and family caregivers’ perspectives on undergoing TAVI at one year post-procedure.