Background: The aim of this study was to explore the current status of end-of-life care and dying of people with intellectual disability based on the experiences of staff in community living services. Materials and Methods: Focus groups and individual interviews were conducted, guided by grounded theory methodology. Results: The current status of…

Background: Because of an increase in life expectancy and de-institutionalisation, many adults with intellectual disability (ID) live with and are cared for by their parents throughout their adult lives. Because of caring demands, the quality of life (QOL) of parents may be affected. The study explored the impact of caring for an adult with ID on…

Background: Planning for future care after the death of parental caregivers and adapting disability support systems to achieve the best possible quality of life for people with intellectual disability as they age have been important issues for more than two decades. This study examined perceptions held by family members, group home staff and…

Purpose: To describe caregivers' constructions of their caregiving role in providing care to elders they knew were dying from life-limiting illnesses. Design and Methods: Study involved in-depth interviews with 27 family caregivers. Data were analyzed using constant comparative analysis. Results: Four categories were identified: centering life on…

The purpose of this study was to employ complexity theory as a theoretical framework and technology to facilitate the development of a life-long learning model for non-working time in the interdependent homes for adults with Autism Spectrum Disorders (ASD). A "Shining Star Sustainable Action Project" of the ROC Foundation for Autistic…

This article discusses the findings from a study to assess the impact of corrective eye treatment in adults with a learning disability. The Special Visual Assessment Clinic (SVAC) is an optometry led multi professional service delivered in a Resource Centre in Belfast, Northern Ireland. The study, which included user and carer input in its design,…

Background: Family quality of life (FQOL) is a recent concept in intellectual/developmental disability research. Outcomes for the family are important to the provision of services because families, rather than institutions, are increasingly considered the primary support unit. This article presents Australian findings using the international…

Epilepsy is one of the most frequently diagnosed neurological disorders among children. Epilepsy is continuously linked with academic underachievement and social challenges. Despite the implications that these difficulties have for a child's educational success, little is known of how children with epilepsy experience school. Understanding how to…

Purpose: Assess psychometric properties of scales developed to assess experience and perception of physical, psychological, and existential suffering in older individuals. Design and Methods: Scales were administered to 3 populations of older persons and/or their family caregivers: individuals with Alzheimer's disease (AD) and their family…

Background: Australia has few policies to support the transition of older people with intellectual disability from employment to retirement. This study aimed to identify the possibilities and barriers to retirement for older employees in supported employment services. Method: Five distinct participant groups discussed retirement in 6 separate…

Background: Primary family carers of adults with profound intellectual and multiple disabilities (PIMD) experience a range of considerable demands. Method: A census survey was conducted in a city of Taiwan; 796 family carers of adults (aged 18 or older) diagnosed with intellectual disability and/or with multiple disabilities living with the family…

Purpose: Caregivers of stroke patients may adapt to changes in patient functioning over time. If adaptation occurs, then caregiver burden and health may be influenced more by worsening in patient functioning than by static levels of functioning. This study examines the relationship between patients' baseline and changes in functioning and…

Purpose: Several studies have previously documented the existence of a perception gap--the extent to which quality-of-life ratings provided by nursing home residents and caregivers diverge. In this study we use Helson's adaptation-level theory to investigate three types of antecedents: (a) focal factors, (b) background factors, and (c) residual…

A structured interview survey was conducted in a major city in Taiwan to explore and compare older and younger family primary caregivers' well being and their future caregiving plans for these adults with intellectual disability. The sample size was 315 caregivers who were 55 years or older and who cared for adults with intellectual disability and…

This study explores the perceptions of support workers working with adults with learning/intellectual disabilities, training and support needs. Data was collected by focus group (n = 3) and semi-structured interviews (n = 5). Participants saw their key role as maximising quality of life, identified "Trial and error" as the main mode of skill…