An exploratory study of self-reported complicated grief symptoms in parentally bereaved adults with intellectual disability.
Adults with ID can self-report complicated grief when the tool is simple, and they show especially high separation-distress after losing a parent.
01Research in Context
What this study did
de Korte et al. (2021) asked bereaved adults with intellectual disability to describe their grief.
They used a picture-supported questionnaire so participants could answer on their own.
A matched group of adults without a recent loss answered the same items for comparison.
What they found
The bereaved group scored higher on almost every grief item.
Separation-distress items stood out the most.
The results show adults with ID can reliably self-report complicated grief when given the right tool.
How this fits with other research
Wigham et al. (2021) reviewed trauma measures for autistic adults with mild ID. They picked ERQ and DERS as the best starting points for adaptation. P et al. add a grief-specific tool to that short list.
Đorđević et al. (2016) showed adults with mild ID can complete standardized language tests. P et al. extend the same idea to feelings, not just words.
Farrant et al. (1998) used self-report to study aggression coping in adults with ID. P et al. mirror that method but focus on grief, proving the approach works across emotional topics.
Why it matters
You no longer have to guess how an adult with ID feels after a parent dies. Give them an easy-read grief checklist and they will tell you. High separation-distress scores signal a need for extra support or referral. Add this quick screen to your intake packet whenever bereavement is part of the story.
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Join Free →Hand the 12-item easy-read grief screener to any client who mentions a parent’s death and note which separation-distress items score 3 or 4.
02At a glance
03Original abstract
BACKGROUND: Complicated grief involves the experience of grief-related symptoms at a time, and severity, beyond which could be considered adaptive, while persistent complex bereavement disorder (PCBD) has been identified as a condition that requires further study in the typical population. The aims of this study are to (1) explore the symptoms of complicated grief associated with parental bereavement as self-reported by adults with intellectual disabilities (IDs) who have experienced a parental bereavement and (2) conduct an initial examination of how the existing criteria for PCBD apply to this group. METHODS: This study uses a comparative group design, assessing self and staff (proxy) reports for a group of parentally bereaved individuals and a matched group of non-bereaved individuals using the Complicated Grief Questionnaire - ID Self-Report. Participants were 46 individuals with ID, 30 (65%) of whom who had experienced a parental bereavement within the previous 2 years. The age range was 23-67 years (mean = 43.8; SD = 10.3). RESULTS: The results highlight the presence of a range of symptoms of complicated grief in individuals' self-reports, although there was some evidence that separation distress-related symptoms were more apparent. An analysis of individual symptoms showed patterns of higher reports among the bereaved group as would be expected. Comparing staff and self-reports, key criteria showed higher levels in self-reports among the bereaved group. CONCLUSIONS: This study has demonstrated the capacity of people with ID to self-report personal experience of symptoms of complicated grief, when appropriate and accessible assessment tools are used. Some symptoms were more evident among bereaved individuals (compared with non-bereaved participants), and they tended to be from separation distress criteria. This may indicate the relevance of these symptoms for people with ID and question the existing criteria for PCBD in this population, which may have clinical implications for supporting people with ID experiencing a more complicated bereavement response.
Journal of intellectual disability research : JIDR, 2021 · doi:10.1111/jir.12812