How do researchers conceive of spousal grief after cancer? A systematic review of models used by researchers to study spousal grief in the cancer context

Abstract

Few empirical studies (20 of 76) target spousal bereavement specifically after cancer. The process of adaptation to loss is usually decontextualized, removing any consideration of the relationship to the deceased or the experience of caregiving and dying. Our findings suggest that this topic warrants more studies that use both prospective and mixed methodologies, as well as explore typical grief needs and experiences of bereaved spouses.

“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

“…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.…”

“…These types of ‘free text’ survey responses can prove a rich, insightful source of data when analysed appropriately [39, 40], but there are also limitations. Given the survey aim and design it is likely that the responses represent more ‘extreme’ cases, particularly in relation to bad death experiences which may have left the respondent feeling compelled to speak out, and which contrast with some of the more mixed, even positive experiences reported in other qualitative studies [8, 14–19, 33, 34]. It is also more likely that respondents would have commented on service related problems or experiences than other aspects of their caregiving/ grief experiences which might be perceived as more inevitable (e.g., the decline of the patient).…”

“…These reactions have been described as painful and persistent responses associated with mental and physical health problems [6], and for bereaved caregivers, estimations of the proportion of the population who experience complicated grief range from between 10 and 20 % [1]. However, the relationship between caregiving and bereavement remains under-researched [7, 8], and the process of adaptation to loss often decontextualized, without consideration of the experience of caregiving or of the death [8]. …”

“…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].…”

“…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].…”