What makes grief difficult? Perspectives from bereaved family caregivers and healthcare providers of advanced cancer patients

Abstract

Objective: Family members who take on the role of caregiving for someone who is dying begin bereavement after being emotionally and physically taxed by the caregiving experience. The course of bereavement is influenced by a number of factors, including health problems, financial concerns, social support, and family relationships. This paper reports on findings from a secondary analysis of qualitative data from a study examining family caregiver coping in end-oflife cancer care, to describe, from the perspectives of bereaved family caregivers, their perspectives on what made their grief difficult.Method: Qualitative data from three focus groups with family caregivers (n ¼ 19) and two focus groups with health professionals (n ¼ 14) were subjected to interpretive thematic analysis.Results: Our finding suggest three broad areas that make family caregivers' grief difficult: (1) dealing with occurrences in everyday life; (2) dealing with challenges specific to the caregiving situation; and (3) dealing with the healthcare system.Significance of results: The findings provide an important beginning point in understanding the types of issues that seem to make grief difficult for family caregivers of cancer patients at the end of life and can help professional groups to understand what is needed by family caregivers in terms of support and delivery of services.

“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

“…These kinds of guilt experiences are also evident in some of the literature reporting on the bereavement impacts of caregiving prior to the death, such as failure to provide EoLC at home, concerns and regrets over healthcare decisions that were made [15, 20, 22, 23], and increased, long term psychological morbidity amongst widowers who perceived un-relieved symptoms in their loved ones in the last three months of life [9, 10]. Moreover, the ‘good death’ experiences reported in this and other papers [25, 33, 34] and more positive stories of satisfaction and accomplishment reported by participants in other studies [8, 14–19], underline the importance of knowing that everything went as well as it could have done for the process of adjustment post-death.…”

“…Following this, several communication and support needs relating to death and dying were articulated. These included better information on the signs of death in order to facilitate awareness of and preparedness for death [12, 20, 25, 34], along with real time updates on what is happening during the dying process, and what relatives could be doing to help their loved ones at this time. Caregivers and health professionals also described the need for more effective communication and emotional support around EoLC planning and decisions, with detailed discussion at points where the focus of care shifts to prioritising EoLC goals, as evidenced elsewhere [30, 31].…”

“…Although caregivers in some studies described positive outcomes such as feelings of privilege, accomplishment, expressions of love and improved family relationships [8, 14–19], these and other study findings have also pointed to caregiver burden and the physical and emotional exhaustion experienced by carers at the time of death [7, 14, 20, 21]. 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].…”

“…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]. …”

Next of Kin’s Experiences of Shame in End-of-Life Care

“…It can include feelings of losing much of what has been important in life that can lead to bitterness and sadness, [1][2][3] whereas it can also be experienced as rewarding and meaningful, which can leave a sense of pride and self-esteem. 4 The next of kin often want to attend to the needs and wishes of the dying person as well as being present at the time of death.…”