Primary caregivers experience consequences from being in close contact to a person with autism spectrum disorder (ASD). This study used the Involvement Evaluation Questionnaire to explore the level of consequences of 104 caregivers involved with adults with High Functioning ASD (HF-ASD) and compared these with the consequences reported by…

Introduction: People with intellectual disability (ID) experience barriers in accessing mental health care. Recommendations have been made to implement specialist intellectual disability mental health (IDMH) services in Australia. However, there is limited evidence to inform service development. Method: Family members and support persons of people…

Background/Purpose: Accessing oral health care can be more difficult for adults with intellectual disabilities with reports of poorer levels of oral health. This investigation identifies factors influencing engagement in day-to-day oral and dental health care for adults with intellectual disabilities. Method: A survey, containing questions about…

Young people's experiences of, and (dis)engagement with, physical education has received considerable attention in recent years. Yet one 'group', "care-experienced young people", remain 'hidden' within the prevailing literature. In light of their apparent invisibility within research, this novel, exploratory study seeks to gain some…

Background: The intellectual disability field has learned about the lives of people with intellectual disabilities (ID), largely from the perspective of their family and caregivers. Information from caregivers has been critical to scientific advancement, especially when caregivers are engaged on behalf of individuals with significant language…

Background: Providing long-term care to an adult relative with intellectual disability can impact negatively on caregivers' health and well-being. Methods: Data were collected via online and postal questionnaires on 110 family carers' physical and psychological health, family stress and perceived positive gains from caring. Psychological…

Purpose: To investigate the need for sexuality education for individuals with adult onset physical disabilities as it relates to quality of life and to identify current trends in the provision of sexuality education by health care providers relating to quality of care. Data Sources: Literature review from January 1986 to December 2016. Study…

A growing number of individuals with autism spectrum disorder are aging into adulthood. In the United States, Medicaid is the primary payer for services for adults with autism spectrum disorder, yet there are few funded programs that provide dedicated supports to this population. This study examined the experiences of adults with autism spectrum…

Background: A population sample of people with Down syndrome, studied from infancy, has now been followed up at the age of 50 years. From the original sample of 54, there were 27 still in the study at the age of 50, all but four of the losses resulting from deaths. Methods: Intelligence and language skills were tested and daily living skills…

Background: The quality of life (QOL) perceptions reported by adults with intellectual disability (ID) might not reflect their QOL as assessed by support staff or family members. The main purpose of this research was to examine the consistency and agreement between self-report and report-of-others ratings and to analyse if there are predictors for…

The current study investigated healthcare satisfaction and factors related to satisfaction in 92 adults with Autism Spectrum Disorder (ASD). Participants or their caregiver completed a survey about their experiences with primary care and specialty physicians. Respondents reported a high level of satisfaction with their healthcare. The only factor…

Background: Internationally adults with intellectual disability are largely cared for by their families, especially in low- to middle-income countries (LAMIC). Compared to high-income countries, little is known about their experiences in LAMIC such as South Africa. Methods: Focus group discussions were carried out with 37 family caregivers (FCGs)…

The WHO Quality of Life-Brief questionnaire was used to assess quality of life (QoL) among 52 adults with autism (mean age 49 years) followed-up since childhood. Overall, assessments of QOL were more positive than measures of objective social outcome (jobs, independence, relationships etc.) but correlations between caregiver and self-reports were…

This phenomenological research study examined the perspectives of parents and caregivers of persons with low-incidence exceptionalities through the use of semi-structured interviews. The purpose of the study was to determine what, if any, barriers they face in providing the best life possible for their children. All of the adult children in…

Background: This study explored the personal experiences of family carers and residential care staff in supporting adults with intellectual disabilities through the process of bereavement. Method: A semi-structured interview was used to interview 11 carers on their experience of supporting adults with intellectual disabilities through the process…