Breaking the silence: A systematic review of methodology and findings of studies on bereavement among adults with intellectual and developmental disabilities

This study systematically reviewed the methodology and findings of 28 peer-reviewed studies on the experiences of loss, grief, and bereavement among adults with intellectual & developmental disabilities (IDD). Of these studies, five included quantitative data, 11 were qualitative studies, and 12 utilized mixed methods. Furthermore, eight of the included studies were interventions, focused on understanding grief among adults with IDD, including identifying risk- and protective-factors in the face of bereavement. Overall, results showed significant gaps in knowledge about the bereavement process among adults with IDD, and the need for more inclusive studies with increased methodological rigor. Significant themes from the studies included the relevance of understanding the concept of death, communicating about loss/death, symptoms of bereavement, coping strategies, sources of support for adults with IDD, and improving bereavement training for caregivers and staff to adults with IDD. Risk factors associated with diminished health outcomes in the face of bereavement included greater cognitive impairment and exclusion from: (a) funerals and loss rituals, (b) conversations regarding loss and death, and (c) advanced planning and end of life decisions. Effective bereavement coping strategies identified included: (a) spending time with and talking to family or friends, (b) engaging in relaxing activities, such as breathing exercises, listening to music, and/or spiritual engagement, and (c) engaging in creative activities, such as painting, drawing, or storytelling. This review highlights areas for future research to fill existing gaps in knowledge, which is needed to support the health and well-being of adults with IDD when they experience loss.