Background: Research has extensively examined family members’ grief prior to the death of an individual with a life-limiting illness but several inconsistencies in its conceptualization of related constructs, yet significant conceptualization issues exist. Aim: This study aimed to identify and characterize studies published on family members grief before the death of an individual with a life-limiting illness, and propose definitions based on past studies in order to initiate conceptual clarity. Design: A mixed-method systematic review utilized six databases and was last conducted July 10, 2021. The search strategy was developed using Medical Subject Headings. This study was prospectively registered on PROSPERO (CRD42020166254). Results: One hundred thirty-four full-text articles met inclusion criteria. This review revealed across studies a wide variation in terminology, conceptualization, and characterization of grief before the death. More than 18 terms and 30 definitions have been used. In many cases, the same term (e.g. anticipatory grief) was defined differently across studies. Conclusions: We found grief occurring before the death of a person with a life-limiting illness, which we termed pre-death grief, is comprised of two distinct constructs: anticipatory grief and illness-related grief. Anticipatory grief is future-oriented and is characterized by separation distress and worry about a future without the person with the life-limiting illness being physically present. Illness-related grief is present-oriented and is characterized by grief over current and ongoing losses experienced during the illness trajectory. These definitions provide the field with uniform constructs to advance the study of grief before the death of an individual with a life-limiting illness.
e24073 Background: Understanding the experience of individuals with cancer (pts) who utilize Medical Aid in Dying (MAID) is important given growing access and limited research in the U.S. Methods: Chart review from January 1, 2014-October 1, 2020, of all pts who inquired (but did not initiate completion of all legal requirements), initiated (but did not complete all legal requirements to obtain access to the medications), or completed all legal requirements and could have had access to medications (whether or not they were obtained or used) at Seattle Cancer Care Alliance/University of Washington. Chi-square tests were used to compare differences in pt characteristics between the inquired/initiated versus completed group. Results: Of 498 total pts, 116 (23.3%) inquired, 127 (25.5%) initiated, and 255 (51.2%) completed the MAID process, of which, 45.9% (117/255) were known to have used the medications. At time of first inquiry (FI), mean age was 66 years (standard deviation [SD] = 11.9)/median 67.3/range 22-94; 206 (41.4%) were female; and 40 (8.0%) were non-white, while 11 (2.2%) were Hispanic/Latino and 14 (2.8%) were non-English speaking. At FI, 292 (58.6%) pts were married or had a significant other; 152 (30.5%) had a religious affiliation; 23 (4.6%) were uninsured; and 282 (56.6%) had Medicare. Mean months from the original cancer diagnosis and FI was 36.5 (SD = 50.3, range 0.1-366.1). 461 (92.6%) pts had solid/central nervous system (CNS) tumors, of which 231 (46.4%) had presented with metastatic disease. At FI, 84 (16.9%) were currently hospitalized; in total, 236 (47.4%) pts had been hospitalized within the 3 months prior to FI. A total of 71.9% (358/498) had not yet initiated hospice at FI; 51.8% (258/498) had evidence of advance care planning (ACP), including 41.5% (107/258) with a Physician Order for Life Sustaining Treatment on file. Overall, 152 (30.5%) and 166 (33.3%) of pts had seen social work or palliative care in the 30 days prior to FI, while 62 (12.4%) had met with a spiritual health clinician. Statistically significant differences were found between those who inquired/initiated versus completed with the following pt characteristics: non-white (ꭓ2= 6.596, p = .010); Medicaid versus all other insured (ꭓ2= 9.489, p = .002); those hospitalized at FI (ꭓ2= 6.101, p = .014); and those without evidence of ACP (ꭓ2= 17.090, p < .001). Pts with a hematologic malignancy (HM, n = 37/498, 7.4%) were less likely to complete the MAID process compared to pts with solid/CNS tumors (ꭓ2= 7.378, p = .007); 43.2% (16/37) of HM pts did not complete due to rapid decline. Conclusions: Less than half of pts who initially inquired about MAID completed the process. Recent hospitalizations and evidence of ACP were relatively common compared to current utilization of hospice or prior use of supportive care services. Future research should investigate why non-white pts, those with Medicaid and those with HM may be less likely to complete the MAID process.
Objectives This study evaluated whether COVID-19-specific risk factors (e.g., feeling guilty for not being present with the deceased at the time of the loss and feeling emotionally distant from the deceased prior to the loss) were associated with prolonged grief disorder (PGD) symptomatology or diagnosis among young adults bereaved due to any cause (e.g., illness and violent loss). Methods We surveyed 196 young adults who had a family member/close friend die during the COVID-19 pandemic. Participants completed the PGD-12 Questionnaire and the 10-item Pandemic Grief Risk Factors (PGRF) Questionnaire. Results More time spent with the deceased before the loss and greater endorsement of pandemic grief risk factors were associated with increased PGD symptoms and a greater likelihood of meeting the diagnostic criteria for PGD. Significance of results The COVID-19 pandemic created unique risk factors that affected the grieving process for bereaved individuals, regardless of whether the death was related to COVID-19 infection. These findings add to a growing body of literature examining grief and loss within the unique context of the COVID-19 pandemic and suggest that there may be detrimental long-term psychological outcomes for these bereaved individuals, regardless of the cause of death. Routine screening for these unique risk factors in medical and psychological clinics is warranted to help identify those individuals who could benefit from early intervention. Also, it will be important to understand and possibly modify evidence-based interventions and prevention programs to directly address the identified unique PGRF.
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