Honoring the voices of bereaved caregivers: a Metasummary of qualitative research

Abstract

BackgroundFamily caregiving in the context of advanced disease in particular, can be physically and emotionally taxing. Caregivers can subsequently face bereavement exhausted with few supports, limited resources and a significant proportion will develop negative psychological and social outcomes. Although some research has attended to the bereavement experiences of family caregivers who had cared for a person requiring palliative care, a comprehensive qualitative understanding of the impact of caregiving on bereavement has not been articulated. The purpose of this study was to conduct a qualitative metasummary to explore the experiences of bereaved family caregivers of people who received palliative care services, regardless of their underlying disease.MethodsSandelowski and Barroso’s qualitative metasummary method was utilized: 1287 articles were identified through extensive database searches (i.e. – MEDLINE, PsychINFO, and CINAHL) and reviewed to determine if they fit the criteria. Those included in the review were assessed for study quality. Findings from each study were then thematically coded and a frequency of themes was calculated.ResultsThe sample consisted of 47 qualitative studies. A total of 15 themes emerged. In descending order of frequency, the 15 themes were: the individual emotions of serenity, sadness, guilt, uncertainty, trauma, escape, and anger; post-loss experiences that helped the caregiver in bereavement; post-loss experiences that hindered; practical life changes; caregiver role identity; pre-loss experiences that helped; pre-loss experiences that hindered; caregiver context; and a need for different kinds of supports. Three key findings emerged from the themes: (1) many different aspects of the caregiving experience impact the bereavement experience, (2) every bereavement experience is unique, and (3) a variety of supports must be developed and made available to caregivers to meet these unique needs.ConclusionsBased on the metasummary findings, changes are needed in practice and policy to ensure the health and well-being of the family caregiver is maintained by offering support both during caregiving and bereavement.

Bereavement stressors and psychosocial well-being of young adults following the loss of a parent – A cross-sectional survey

“…38,114 A prerequisite that may facilitate the reception of information is experiencing empathetic, available and flexible encounters with health care staff, as they foster feelings of warmth and comfort, as demonstrated in Study I. Positive emotions have been found to be related to good relations with health care staff, 30 which is beneficial for the possibility to inform and prepare young adults for their parent's impending death.…”

“…Nonetheless, difficult feelings, such as sadness, guilt and regret (about how their caregiving affected the ill person), uncertainty (related to life change), trauma (related to chaotic feelings), escape (from painful feeling), and anger (toward oneself, the family or health care providers), dominated the individuals' experiences in bereavement. 30…”

“…The experience of loss and grief is unique for each family member; thus, a variation of support is needed in bereavement. 30 Support can be divided into serving four functions: emotional support (e.g., caring and empathy); informational support (e.g., information and advice); instrumental support (e.g., tangible help such as financial or practical assistance); and appraisal support (e.g., feedback on the individual's approach and behavior to promote selfevaluation. [50][51][52] Who delivers the support might determine whether the interaction is appreciated as supportive, for example, advice received from health care staff could be perceived as being helpful, while the same advice received from a family member could be perceived as being provoking.…”

Nursing Professionals’ Attitudes, Strategies, and Care Practices Towards Death: A Systematic Review of Qualitative Studies

“…The feeling of relief, tied to serenity and acceptance, is common among caregivers once the patient has died, especially if their illness was causing a great deal of suffering (Holtslander et al, 2017). However, there are not many studies exploring whether or not clinicians experience relief after a patient’s death, either because the clinicians’ grief is not taken into account or because previous studies have placed the emphasis on cases in which there are negative grief‐related emotions (Funk, Peters, & Roger, 2017).…”

Measuring quality of life in life-threatening illness – content validity and response processes of MQOL-E and QOLLTI-F in Swedish patients and family carers

“…Hence the QOL of family carers should also be assessed. Furthermore, family carers are critical for care of the patient and home palliative care organization and they may need support [15]. The Quality of Life in Life-Threatening Illness -Family carer version (QOLLTI-F) is a companion instrument to Unique to QOLLTI-F is an item asking family carers about the patient's condition, which is very important to their own QOL [17].…”