Signs of post-traumatic stress disorder in caregivers following an expected death: A qualitative study

Abstract

This exploratory study demonstrates the phenomenon of the 'shocked caregiver'. If trauma symptoms are present in bereaved carers in palliative care, it has implications for palliative care provision. Given that trauma symptoms may be distinct from prolonged grief disorder, this may also have implications for provision of bereavement counselling. Further research into this phenomenon is required.

“It still haunts me whether we did the right thing”: a qualitative analysis of free text survey data on the bereavement experiences and support needs of family caregivers

“…As in Sanderson et al’s study reporting on death experiences and bereavement, the language of trauma was evident as respondents recounted their death bed experiences and appeared haunted by memories of the death [17]. It seems that some of our respondents also experienced an added critical dimension to their trauma and adjustment difficulties; living with guilt and regret.…”

“…It seems that some of our respondents also experienced an added critical dimension to their trauma and adjustment difficulties; living with guilt and regret. Whereas most participants in Sanderson et al’ s study engaged in positive self-reappraisal and were able to transform their trauma into more ‘bearable’ stories [17], these respondents not only perceived physical suffering in their loved ones, but also experienced a sense of powerlessness, exclusion and lack of understanding over what was happening. As a result, many also experienced feelings of lasting guilt and self-doubt over whether the right decisions were made and whether they could have done more.…”

“…Former caregivers have also reported feelings of failure, guilt and regret in relation to unfulfilled place of care preferences and decision-making responsibilities and outcomes [15, 19, 20, 22, 23]. These accompany haunting images of physical and emotional suffering associated with the illness [8, 12, 24, 25], the physical and cognitive decline of the patient [8, 15, 25] and the trauma of the death itself [17, 25]. Other factors that have been found to impact upon bereavement and complicate the grieving process for family caregivers include missing the death, lack of preparedness for death [12, 20, 25], inadequate terminal support [20, 24, 25] and insufficient knowledge of patient history amongst treating healthcare professionals [20].…”

Quality of life, psychological burden, needs, and satisfaction during specialized inpatient palliative care in family caregivers of advanced cancer patients

“…At the social level, FCs are prone to financial problems, isolation, and occupation-related problems in the phase of caregiving [2, 7]. Psychological problems in FCs of patients undergoing palliative care are various with rates of anxiety and depression in up to 40% [2, 8], distress [8], signs of posttraumatic stress disorder [9] or emotional problems including helplessness, uncertainty, and hopelessness [10, 11]. Overall, FCs’ perceived burden and psychosocial concerns increase with the patients’ disease progression [10].…”

Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): Item generation and expert panel feedback

“…Additionally, when the circumstances of a cancer death are perceived as traumatic or unexpected by family members, such as medical interventions that result in disfigurement, uncontrolled pain, seizing or bleeding at the time of death, family members are at greater risk for PTSD specifically (Currier et al, 2006; Zisook et al, 2013; Sanderson et al, 2013). Caregivers who experience high levels of emotional distress and/or stressful events during the patient’s cancer may be particularly vulnerable to intense emotional distress during bereavement (Kapari et al, 2010; Tomarken et al, 2008).…”