A review of the emotional, psychiatric and behavioural responses to bereavement in people with intellectual disabilities.
Bereavement worsens mental health and behavior in people with ID, yet we still lack a clear way to spot traumatic grief.
01Research in Context
What this study did
Hagopian et al. (2005) read every paper they could find on grief in people with intellectual disability. They wanted to see how death of a loved one changes feelings, behavior and mental health.
They pulled the results together into one big picture. The team looked for clear signs of traumatic grief, but found hardly any research on it.
What they found
After a death, people with ID show more sadness, worry and problem behavior. Yet no study gave a firm way to spot traumatic grief.
The review says we still lack a simple checklist or scale for this group. Without one, teams may miss serious grief reactions.
How this fits with other research
Andrews et al. (2024) widened the lens. Their scoping review of 38 studies shows PTSD after any stressful event is also under-studied in ID. They echo the 2005 call: we need clearer rules and tools.
Berger et al. (2015) give real numbers. In a quasi-experimental study, adults with ID exposed to missile attacks had higher post-traumatic stress and daily-living problems than unexposed peers. This backs up the 2005 claim that trauma hits this population harder, but it took ten years to get data.
Hagopian et al. (2000) warn us to check more than one source. They compared three ways to rate emotional distress in ID and found low agreement. The lesson: when you look for grief, collect self-report plus caregiver or staff data.
Why it matters
You may see crying, withdrawal or new self-injury after a client loses a parent. Treat these as possible grief, not just "behavior." Add grief questions to your intake forms and use plain-language pictures so the client can tell you how they feel. Until we get a tested ID-specific grief scale, combine tools and keep good notes.
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02At a glance
03Original abstract
BACKGROUND: Our knowledge and understanding of grief and its consequences have grown rapidly in recent years. There is a growing understanding that bereavement and loss represent a very significant event in the lives of people with intellectual disabilities (IDs). To date, there is no systematic review of the literature on the emotional, psychiatric and behavioural responses to bereavement in people with IDs. METHOD: This comprehensive literature review firstly examines the current opinion regarding the phenomenology of pathological grief in the general population. Research examining the ability of people with IDs to understand the concept of death is explored. In addition, a systematic review of the literature looking at the emotional, behavioural and psychiatric responses to bereavement is carried out. RESULTS: Bereavement and loss have distinct effects on the mental health, behaviour and emotional lives of people with IDs. Following a bereavement, symptoms of depression and anxiety increase, and general behaviour is altered. Traumatic grief symptoms have not yet been specifically studied and quantified. CONCLUSIONS: Particular difficulties are associated with researching the effects of bereavement on people with IDs. Further work needs to be done to more accurately describe the nature, time-scale, severity and frequency of the symptoms of traumatic grief in people with IDs, in order to improve assessment and treatment of affected individuals.
Journal of intellectual disability research : JIDR, 2005 · doi:10.1111/j.1365-2788.2005.00702.x