Anticipatory grief prevalence among caregivers of persons with a life-threatening illness: A meta-analysis

Abstract

ObjectivesCaring for a family member with a life-threatening illness may lead to increased levels of psychological morbidity. Given the lack of recognition of caregivers’ grief, this study aimed to determine the prevalence of anticipatory grief disorders in caregivers of persons with a life-threatening illness for better intervention and management.MethodsCINAHL, Cochrane, Embase, Medline, PubMed, Scopus, PsycINFO and Web of Science were searched up to 21 March 2021 without language and time restrictions. The quality of the included studies was assessed with Hoy’s criteria. A random-effects model was applied to calculate pooled prevalence rates, and multi-regression was performed to examine heterogeneity among studies.ResultsA total of 3278 citations were retrieved, and 18 studies met the eligibility criteria involving 5470 caregivers. The pooled prevalence of anticipatory grief was 24.78% (95% CI 19.04% to 30.99%). The prevalence rates were significantly higher in female caregivers (16.64%; 95% CI 12.24% to 21.53%) compared with male caregivers (6.11%; 95% CI 4.55% to 7.87%). The married group also had a higher risk (14.66%; 95% CI 10.66% to 19.16%) than single group (5.47%; 95% CI 4.31% to 6.76%).ConclusionsThe overall pooled prevalence is substantially higher compared with after-loss grief in the general population and supported the presumptions that preloss grief has a greater magnitude compared with after-loss grief. Bereavement support, educational programmes and relevant resources should be delivered even before the actual loss to address the burden of caregivers.

“It was terrible, I didn’t sleep for two years”: A mixed methods exploration of sleep and its effects among family caregivers of in-home hospice patients at end-of-life

“…This greater prevalence is likely due to response bias: caregivers with continued sleep problems may have been more likely to initiate discussion about post-caregiving sleep. Although somatic hyperarousal patterns at night can persist even after the stressor of caregiving ceases, 78,79 evidence suggests other conditions commonly experienced during end-of-life caregiving including anxiety, 80 depression, 80 and anticipatory grief, [61][62][63]67 and during bereavement including anxiety and depression, 80 grief, 81 and complicated grief (unresolved grief that impairs daily life) 65,81,82 can contribute to poor sleep and be exacerbated by poor sleep. In a recent longitudinal Dutch study (N = 1776), for example, low sleep efficiency, long sleep onset latency, and long wake after sleep onset were associated with more grief symptoms.…”

“…Although all caregivers may feel a loss of freedoms that pre-existed caregiving, the nature of terminal caregiving is one of profound loss and anticipating death, 57 whereas joy and enhanced capacity are more likely to accompany the stresses of adapting to parenthood. 58 Perhaps due to the different purposes of their caregiving, end-of-life family caregivers are more likely than new parents to experience significant mental health disturbances, including higher rates of anxiety and depression, 17,26,32 the profound stress of sadness, 59,60 predeath grief or anticipated grief, 61–67 psychological distress, 68 and unmet needs for social support. 65,69 In addition, end-of-life caregivers can generally anticipate their sleep worsening as illness progresses, whereas new parents can generally anticipate sleep improving as their child develops.…”

Scoping review of grief studies in Indonesia

“…Grief can also occur before the death of a person, in addition to pathological grief after a loss. Family members or caregivers of those with a life-threatening illness may experience anticipatory or pre-loss grief (Kustanti et al, 2022). The prevalence of grief disorder in the general population was 9.8% (Lundorff et al, 2017), unexpected death bereavement was 49% (Djelantik et al, 2020), cancer-bereaved families were 14.2% , and COVID-19 related bereavement was 46.4% (Kustanti et al, 2023) compared to the prevalence of anticipatory grief symptoms which was 24.8% (Kustanti et al, 2022).…”

Investigating risk of self-harm and suicide on anniversaries after bereavement by suicide and other causes: a Danish population-based self-controlled case series study

“…Evidence suggests that the first week (Ajdacic-Gross et al, 2008) and the first month (Ajdacic-Gross et al, 2008;Hiyoshi et al, 2022) after bereavement by any cause carries the greatest risk of suicide attempt or suicide. This is likely to represent an acute grief reaction (Oquendo et al, 2014) and/or the worsening of pre-existing psychiatric illness in the context of carer burden or anticipatory bereavement (Kustanti et al, 2022). The elevated suicide risk demonstrated over the first year after allcause bereavement (Ajdacic-Gross et al, 2008;Erlangsen et al, 2004;Guldin et al, 2017) may be linked to new onset or worsening depression or substance use and the longer-term impact of grief (including stigma and shame), loneliness and economic hardship (Stroebe et al, 2007).…”

“…, 2014 ) and/or the worsening of pre-existing psychiatric illness in the context of carer burden or anticipatory bereavement (Kustanti et al. , 2022 ). The elevated suicide risk demonstrated over the first year after all-cause bereavement (Ajdacic-Gross et al.…”