Department of Psychiatry, St Michael's House Disability Services, Dublin, Ireland.
UCD Centre for Disability Studies, University College Dublin, Dublin, Ireland.
J Intellect Disabil Res. 2021 Apr;65(4):297-305. doi: 10.1111/jir.12812. Epub 2021 Jan 11.
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.
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).
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.
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.
复杂悲伤涉及在某个时间点经历悲伤相关症状，其严重程度超出了适应性的范围，而持续性复杂丧亲障碍（PCBD）已被确定为一种需要在典型人群中进一步研究的疾病。本研究的目的是：（1）探讨经历过丧亲之痛的智力障碍成年人（ID）自我报告的与父母丧亲相关的复杂悲伤症状；（2）初步考察 PCBD 的现有标准如何适用于该群体。
本研究采用对比组设计，使用复杂悲伤问卷- ID 自我报告，对一组经历过丧亲之痛的个体和一组匹配的非丧亲个体的自我报告和工作人员（代理）报告进行评估。参与者为 46 名 ID 个体，其中 30 名（65%）在过去 2 年内经历过父母丧亲。年龄范围为 23-67 岁（平均年龄=43.8；标准差=10.3）。
研究结果突出了个体自我报告中存在一系列复杂悲伤症状，尽管有证据表明与分离痛苦相关的症状更为明显。对个别症状的分析表明，丧亲组的报告更高，这是预期的结果。将工作人员报告和自我报告进行比较，关键标准表明丧亲组的自我报告中存在更高的水平。
本研究表明，当使用适当和可及的评估工具时，ID 个体有能力自我报告个人经历的复杂悲伤症状。一些症状在丧亲个体中更为明显（与非丧亲参与者相比），而且它们往往来自于分离痛苦标准。这可能表明这些症状与 ID 个体有关，并对该人群中 PCBD 的现有标准提出质疑，这可能对支持经历更复杂丧亲反应的 ID 个体具有临床意义。
