Synthesising existing research on complicated grief in intellectual disability: findings from a systematic review.
Complicated grief hides behind behavior in clients with ID—screen for it the same way you screen for pain.
01Research in Context
What this study did
Kremkow et al. (2022) pulled every paper they could find on grief in people with intellectual disability. They screened studies from 1990 through 2021 and kept 18 that met strict rules.
The team looked for signs of complicated grief, also called prolonged grief. This is when sadness stays intense more than a year after a loss and blocks daily life.
What they found
Complicated grief is common in clients with ID, but most staff miss it. Behaviors such as withdrawal, anger, or sleep loss are blamed on the disability instead of on grief.
Only one tool, the CGQ-ID, is built for this group. The review says we need clearer checklists and real treatment studies.
How this fits with other research
Guerin et al. (2009) already showed the CGQ-ID works well. Kremkow et al. (2022) fold that study into their bigger picture and still say the tool is under-used.
Hermans et al. (2010) found the same hole for depression screens in adults with ID. Together the two reviews paint one theme: we lack good mood measures for this population.
Cook et al. (2021) looked at trauma instead of grief and also found thin evidence. All three reviews end with the same call—build better screens and test treatments.
Why it matters
If you serve adults with ID, add a brief grief check to every intake and annual review. Ask about recent losses, note mood or behavior shifts, and use the free CGQ-ID items. One extra page can stop years of misread behavior and speed access to coping skills or therapy.
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02At a glance
03Original abstract
BACKGROUND: Complicated grief has been identified as a phenomenon in the general population, and there is an increasing body of research investigating complicated grief in people with intellectual disability. The aim of this study is to synthesise this existing knowledge from research published between 1999 and 2022. METHODS: A structured systematic review using PRISMA guidelines was conducted, which searched three commonly used databases (Medline, PsycINFO and CINAHL) for research on the topic of bereavement and intellectual disability. The articles identified in this search were screened to identify those that addressed the issue of 'complicated grief', with all abstracts and subsequent full texts reviewed by two researchers. RESULTS: In total, 179 abstracts were initially identified, with 34 articles eligible for full text screening and 18 papers reaching criteria for inclusion. Data relating to the studies' objectives were extracted under the headings of definition, defining principles, signs and symptoms, risk factors and treatments for complicated grief in intellectual disability. Thematic analysis of the extracted data was performed to identify key themes. CONCLUSIONS: This review highlights that people with intellectual disability are likely to experience complicated grief reactions and that complicated grief is both underestimated and a clinically significant condition for people with intellectual disability. Future research should work to clarify diagnostic criteria and identify appropriate interventions.
Journal of intellectual disability research : JIDR, 2022 · doi:10.1111/jir.12973