Background: Increasing numbers of older adults with intellectual disabilities are living with ageing parents. These families need support to plan for the future to avoid crisis interventions following parental death. Method: Interviews and focus groups were conducted with people with intellectual disabilities (aged 40+) (N = 9), parents (N = 11)…

Introduction: Like the broader population, people with intellectual disability (ID) experience the process of grief after loss of a loved one. However, there are a series of risk factors characteristic of this population that can hinder the development of adaptive grief, including cognitive and affective aspects. The objective of this study was to…

Objectives: Characterise the circumstances associated with death during admission of adults with Down syndrome (DS) and to identify predictors of mortality. Patients and Methods: Observational study based on data on all emergent admissions of adults with DS to hospitals of the Spanish National Health System between 1997 and 2014. We analysed…

Purpose: The purpose of this study is to investigate the incidence of all-cause mortality, institutionalization, and condition improvement among participants of a state home- and community-based services program (HCBS). Methods: We evaluated the follow-up data of 11,444 individuals with disabilities aged 45-59 years at application who received…

Background: Considerable attention is rightly paid to preventable deaths in adults with intellectual disabilities. The pattern of these deaths and the implications for services have been less considered. Method: This paper forms part of a larger cross-sectional study of deaths in a defined population of adults with intellectual disabilities. Data…

Background: People with intellectual disabilities have traditionally been excluded from Advance Care (AC) planning. This study aimed to improve access to and the quality of AC planning for this community. Method: A Participatory Action Research study was led, and participated in, by co-researchers with intellectual disabilities and disability…

Background: This study examines recent trends in the age-at-death disparity between adults with and without intellectual and/or developmental disabilities in the United States. Method: Data were from the 2005-2017 U.S. death certificates. Average age at death was compared between adults whose death certificate did or did not report an intellectual…

In the current research, we aimed to investigate whether there are significant differences in participants' attitudes towards adults with disabilities (AWD) and children with disabilities (CWD). We also explored a series of demographical factors (i.e. gender, age, educational level, parental status, contact with a friend or a family member with a…

The purpose of our study was to systematically compile fatality data in Canada involving minors in school and youth groups engaged in outdoor learning, and then compare these incidents to other available data related to risk of fatalities, fatality rates, patterns, and contributory causes. This mixed methods study involved collecting fatality data…

Grief scholars have concurred that continuing bonds with the deceased represent normal adaptive behaviour in the face of loss, and numerous researchers have stressed the therapeutic benefits of writing through trauma; however, few have interrogated the potential therapeutic effects specific to elegy writing, which offers robust opportunities to…

Background: We now have sufficient evidence demonstrating inequalities in specific avoidable causes of death for adults with intellectual disability compared to their peers without intellectual disability. Apart from COVID-19, the largest differentials that disadvantage people with intellectual disability are in relation to pneumonia, aspiration…

Background: Caregivers often avoid involving people with intellectual disability in end-of-life discussions and activities. One reason is fear that the person may become upset or psychologically harmed. Methods: Pre and post a 6-month intervention about end of life, we assessed depression, anxiety, and fear of death among intervention (n = 24) and…

Background: Sepsis is a common cause of death within the general population and the third most common cause of death for people with a learning disability, suggesting an increased vulnerability or different trajectory within this population. Despite this, there is currently no research into the direct lived experiences of people with a learning…

This article explores the development of public programs on the theme of grief, death and dying at the Royal British Columbia Museum in Canada, and how these programs have grown with the involvement of community partners. Although the programs started as a response to a small historic sign in the gallery, they now honor the interests of our…

Should forgiveness be considered a civic virtue that promotes peace and justice following injustice? In the aftermath of conflicts as severe as state-sponsored genocide, how can relationships be restored, communities reconciled, and justice achieved? We interviewed 15 adults in Rwanda--survivors of the 1994 genocide, nominated as exemplars for…