Introduction: Bereavement support is an integral element of palliative care. Emerging evidence stipulates that bereavement support should be reserved for those most at risk of poor outcomes. While this evidence makes identifying those at risk of experiencing a complex bereavement a necessary first step, it has been difficult to arrive at a consensus as to whom that should be.
Aim: To explore whether palliative care in-patients with advanced disease are concerned about the bereavement needs of others and, if so, is it their next-of-kin.
Design: A qualitative study using semi-structured interviews, and thematic analysis using a constant comparative method.
Setting/participants: Patients identified by their physicians as being aware of their limited prognosis (n = 19) in a specialist palliative care service in Sydney, Australia.
Findings: Three key themes emerged: 1) Families considered close and supportive may not require bereavement follow-up; 2) Families with previous significant losses or who have more complex lives are perceived by patients as having greater risk; and 3) Asking palliative care patients about whom they are most concerned in their network after their death is difficult but possible.
Conclusions: There are potentially people in the palliative patients’ networks who may be in need of bereavement support, but who are unlikely to be informed about available bereavement services. New strategies are needed to identify people who may benefit from bereavement support.
Au cours du siècle dernier, les réactions et processus de deuil ont de plus en plus été perçus et conceptualisés comme « a-normaux », c’est-à-dire pathologiques lorsqu’ils sont inhabituels, trop longs ou trop courts, trop intenses ou pas assez présents. Le deuil est souffrance (dolere étymologiquement) et notre société veut le bonheur, le contrôle et l’efficacité. Le deuil doit donc être « traité ». Pourtant, le deuil existe car il est le coût de l’attachement essentiel entre les êtres humains, attachement qui a été phylogénétiquement et ontologiquement sélectionné pour notre survie et notre développement. La perspective humaniste, centrée sur la personne et expérientielle, permet d’envisager les réactions et processus de deuil de manière plus compréhensive, humaine, idiosyncratique. Dans cet article, au-delà d’un bref retour sur les développements théoriques et empiriques dans ce domaine, je présenterai les éléments scientifiques permettant d’appuyer une perspective d’accompagnement centrée sur la personne que tout un chacun peut vivre de manière privée et/ou professionnelle. Basée sur les preuves scientifiques, celle-ci apparaît comme plus respectueuse des diversités intra- et interindividuelles, considérant la personne de manière holistique et intervenant par la relation de qualité à l’autre. L’aidant authentique, respectueux, empathique, flexible et chaleureux est amené à entreprendre un travail humanisant l’autre et le soin qu’il lui apporte tout en répondant aux critères sociétaux d’efficacité attendue.
BACKGROUND: Post-intensive care syndrome-family is a common problem in relatives of patients who die in an intensive care unit. Family-centred end-of-life care with support for the family during and after the death is supposed to prevent suffering and avoid illness.
AIMS AND OBJECTIVES: This study aimed to investigate family-centred end-of-life care and bereavement follow-up services offered to family members of patients who die in Swedish intensive care units.
DESIGN, METHODS: A cross-sectional study using a 16-question survey based on family-centred end-of-life care was sent to all 81 adult intensive care units. Data were analysed by descriptive statistics and chi-square. Respondents were able to add individual comments to the questionnaire.
RESULTS: Although the majority (76.7%) offered some kind of follow up, this service was not always offered. Modes for invitation, timing, and contents in the follow up varied between the units. The staff tried to individualize the follow-up service according to the family's needs. Nurses and social workers were the only professionals who provided follow-up conversations on their own. Most of the intensive care units (97.3%) kept diaries that were handed over to the family when they left the unit after the patient's death or at a follow-up visit. Only 8.8% reported that they always offer the family the opportunity to be present during resuscitation. Most respondents reported that patients (60.6%) died in a private room.
CONCLUSIONS: Family-centred end-of-life care varied among the intensive care units, and some families were not offered any follow up at all. Timing, invitation, and elements in the follow up differ between the units. Diaries were commonly kept and usually given to the family. Few units offered the family to be present during resuscitation.
RELEVANCE TO CLINICAL PRACTICE: There is a need for national guidelines to ensure that all bereaved families receive equal and individual family-centred end-of-life care.
This article deals with the issue of perceived social support among 40 bereaved parents who have lost a child in a terrorist attack in Israel. The aim is to gain a better understanding of the nature and quality of the formal and informal support that the parents received. The parents were interviewed using semistructured in-depth interviews. The content analysis revealed that alongside the positive aspects, the parents also emphasized the negative side of the encounter with the social environment. The positive aspects included feeling of appreciation for the assistance in the coping process. The negative aspects included a sense of abandonment and distress. The dialectic nature of the domain, together with a recognition of its importance, points to the need to reconcile between the desire on the part of the social environment to assist the bereaved parent on one hand and ways to implement it on the other hand.
Despite the increasing number of people being bereaved by suicide, little is understood concerning the experiences of those bereaved by suicide as they struggle to make sense of a loved one’s death. The current study explored the experiences of four mothers who had been bereaved by suicide and the role of support groups in the meaning-making process following bereavement by suicide. Participants were interviewed and transcribed interviews were then analysed from an interpretative phenomenological perspective. Four main themes were identified: Continuing role of the mother; A never-ending quest; Finding sanctuary; and Rising up from the ashes. These themes relate to a range of emotions following bereavement by suicide, the meaning-making process, the social context and the role of the support group. Clinical implications are discussed in relation to these findings.
Significant strides have been made in the trauma and grief fields to address the unique needs of those who have lost a loved one to violent death. Several treatment techniques have been found to be effective for symptoms of trauma and grief that are prevalent among violent loss survivors including restorative retelling and cognitive behavioral strategies. Current interventions either are tailored for a specific mental health problem or are more universal in nature for grief related to violent loss. This paper presents an evidence-based and guided modular approach for responding to the myriad potential mental health needs of violent loss survivors. A comprehensive module-based structured intervention for violent loss survivors, which specifically targets several common mental health difficulties following traumatic loss, may offer clinicians a thorough and flexible approach guided by clinical assessment to address the distinctive and common issues violent loss survivors often face.
Understanding survivors’ perspectives on treatment is important in a patient-centered approach to developing interventions for traumatic loss. Focus groups were conducted with 23 motor vehicle crash, suicide, and homicide survivors. Survivors’ attitudes toward a modular treatment for traumatic loss were assessed. This study also sought to explore survivors’ perspectives on the acceptability of existing evidence-based practice elements in the treatment of bereavement-related mental health problems. Qualitative analyses suggest that survivors liked a modular treatment approach and agreed that existing practice elements could be useful in addressing bereavement-related concerns. Implications for developing a modular treatment package for traumatic loss are discussed.
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and trauma-informed family systems model that is theory-driven, research-informed, and grounded in practice-based evidence. Pathfinders incorporates principles central to narrative approaches, with a focus on restorative processes for helping children and families stay on track developmentally. This article outlines the structure, process, and content of Pathfinders, including examples of creative interventions used within the program.
This paper explains the healing benefits, the “sweet unexpected” of the title, which results from using poetry to engage trauma, including traumatic grief. The benefits of poetry are presented alongside a discussion of a 22-year-old nonprofit called The Pongo Poetry Project. The sweet unexpected includes the ease with which trauma survivors engage their trauma narrative, the critical insights that emerge in poetry, the beneficial social context of sharing poetry, and the healing benefits of poetry for writers, care providers, and readers alike. The paper concludes by providing resources that can help people use poetry in their own work.
Parents who experience the death of a child are at high risk for psychopathology. Because a large percentage of pediatric deaths occur in the pediatric intensive care unit each year, a follow-up meeting between bereaved parents and intensivists could provide essential emotional support, although some parents may not attend. The aim of this study was to explore demographic and medical factors that may distinguish between bereaved parents who attend a follow-up meeting with their child’s pediatric intensivist and those who do not. Our analysis revealed that parents of children who died of trauma were less likely to attend a follow-up meeting with an intensivist. It is possible that symptoms of posttraumatic stress play a role in these findings. Enhanced efforts to identify other interventions for this specific subset of bereaved parents may be necessary.
The experience of same-sex-attracted people who have lost a partner is neglected in the existing literature on bereavement. Previous research on lesbian, gay, bisexual, transgender, intersex, queer and questioning (LGBTIQ) populations tends to focus on the loss of a partner to HIV-related causes, and there is scant research concerning non-HIV-related bereavement. The purpose of this article is to investigate the non-HIV-related bereavement experiences of same-sex partners and to address the potential complications of disenfranchised grief. Coping with the loss of a same-sex partner and the impact of bereavement on subsequent relationships are also discussed. Implications for counseling of bereaved same-sex-attracted individuals are drawn, and recommendations for future psychological research on the experience of bereavement are made.
Despite the potentially devastating effects of a death on the lives of adolescents, little is known about their help-seeking experiences. We interviewed by telephone 39 bereaved adolescents on their help-seeking experiences. Thematic analysis resulted in three themes: Formal support, Informal support and School-related support. Participants provided a critical appraisal of positive and negative experiences, and noted barriers and facilitators for help-seeking. As adolescents bereaved through suicide may receive less social support, professional help is a much-needed auxiliary. Parental encouragement is important in accessing adequate professional help.
This article introduces a cartography tool to help social workers work with and support family caregivers. This tool aims to determine (1) which caregivers are likely to need additional support during bereavement and (2) what resources the caregiver has that care teams can rely on for decision-making and planning. The purpose of this article is to present a preliminary assessment of the cartography based on the feedback collected from potential users regarding the tool's content and usage.
Le décès d’un jumeau au cours d’une hospitalisation en réanimation néonatale présente plusieurs problématiques que l’infirmière puéricultrice prend nécessairement en compte. Identifier les éléments qui caractérisent la problématique de l’accompagnement des familles confrontées en même temps aux processus de deuil et d’attachement permet de proposer des actions adaptées.
The death of a loved one is ultimately a universal experience. However, conventional interventions employed for people suffering with uncomplicated grief have gathered little empirical support. The present study aimed to explore the potential effects of ayahuasca on grief. We compared 30 people who had taken ayahuasca with 30 people who had attended peer-support groups, measuring level of grief and experiential avoidance. We also examined themes in participant responses to an open-ended question regarding their experiences with ayahuasca. The ayahuasca group presented a lower level of grief in the Present Feelings Scale of Texas Revised Inventory of Grief, showing benefits in some psychological and interpersonal dimensions. Qualitative responses described experiences of emotional release, biographical memories, and experiences of contact with the deceased. Additionally, some benefits were identified regarding the ayahuasca experiences. These results provide preliminary data about the potential of ayahuasca as a therapeutic tool in treatments for grief.
OBJECTIVES: To understand how bereaved spousal caregivers of persons with dementia perceive and respond to changes over the course of their spouse's disease, from diagnosis into bereavement.
DESIGN: Qualitative interview study with convenience sampling and thematic analysis approach.
PARTICIPANTS: Participants included eight women and two men (n=10) who had been spousal caregivers for a person with dementia prior to his/her death. Participants were older adults who self-reported good health and were bereaved longer than a year.
SETTING: Data collected in a small Canadian prairie city between fall 2014 and winter 2015.
FINDINGS: Two overarching themes were developed as important components of participants' caregiving journey: emotional reactions to change and variation in social connectedness throughout the caregiving and bereavement journey. Four key sub-themes developed through the analysis of emotional reactions to events: memorable grief overshadows persistent grief, a progressive feeling of hopelessness and overwhelmed, relief is common but hidden and gratitude is a milestone in a constructive bereavement. Three key variations of social connectedness throughout the caregiving and bereavement journey were developed: the importance of social inclusion throughout a caregiving and bereavement journey, the repeated loss of companionship and withdrawing from social interactions is contingent on needs.
CONCLUSIONS: The findings suggest that emotional changes throughout caregiving and bereavement are not linear. The need for support from family, friends and new social supports is influential in enabling the caregiver to move forward during caregiving and bereavement.
BACKGROUND: Pregnancy and infant loss has a pervasive impact on families, health systems, and communities. During and after loss, compassionate, individualized, and skilled support from professionals and organizations is important, but often lacking. Historically, little has been known about how families in Ontario access existing care and supports around the time of their loss and their experiences of receiving such care.
METHODS: An online cross-sectional survey, including both closed-ended multiple choice questions and one open-ended question, was completed by 596 people in Ontario, Canada relating to their experiences of care and support following pregnancy loss and infant death. Quantitative data were analyzed descriptively using frequency distributions. Responses to the one open-ended question were thematically analyzed using a qualitative inductive approach.
RESULTS: The majority of families told us that around the time of their loss, they felt they were not adequately informed, supported and cared for by healthcare professionals, and that their healthcare provider lacked the skills needed to care for them. Almost half of respondents reported experiencing stigma from providers, exacerbating their experience of loss. Positive encounters with care providers were marked by timely, individualized, and compassionate care. Families indicated that improvements in care could be made by providing information and explanations, discharge and follow-up instructions, and through discussions about available supports.
CONCLUSIONS: Healthcare professionals can make a positive difference in how loss is experienced and in overall well-being by recognizing the impact of the loss, minimizing uncertainty and isolation, and by thoughtfully working within physical environments often not designed for the experience of loss. Ongoing supports are needed and should be tailored to parents' changing needs. Prioritizing access to specialized education for professionals providing services and care to this population may help to reduce the stigma experienced by bereaved families.
Death, disease and disaster can inflict anyone, anywhere and at any time. While occurrence of such an event could be absolved of any selective strike, the outcome reflects otherwise. Historical deprivations experienced by certain populations have caused more bereavement and sorrow to them than those who have experienced lesser or no deprivation. Therefore, the process which shapes the factors to yield such a result is important and needs to be understood for any policy suggestions and programmatic inputs. Loss of pregnancy and newborn inflicts sorrow and bereavement across space, time and social labyrinth. The degree of bereavement is likely to reduce with time, but space and social context govern the response to it. Therefore, factors contributing to the differentials vary in their demographic, social and economic characteristics. The loss of pregnancy and newborn remains inadequately addressed. Family and community play a significant role in coping. While the developed countries have institutional structure to address coping with the loss, the South Asian countries rely heavily on the family and the community for such support. The present review examines these trajectories across social groups.
OBJECTIVES: To ascertain bereavement practices offered by hospitals and medical practitioners (MPs), factors that influence the likelihood of MPs' involvement in funeral attendance, the benefits and barriers to attendance to a patient's funeral as perceived by MPs and the rate of attendance to patients' funeral by MPs.
DESIGN: MEDLINE (Ovid), Embase, PubMed, and Google Scholar were searched with a systematic search structure for randomized controlled trials, comparative observational studies, case series, cross-sectional studies, editorials, and letters. The search was limited to English only. The study was registered with Prospero (Registration Number: CRD42018095368).
RESULTS: A total of 381 articles were identified with 46 articles meeting the inclusion criteria. Of the 46, 16 were editorials and 12 were letters. Eighteen were cross-sectional studies conducted in the United States, Canada, Australia, Israel, and Ireland. Year of publication ranged from 1990 to 2017. Of these, 12 were quantitative, 3 were qualitative, and 3 were mixed-method studies. Two of the cross-sectional studies involved family members of deceased patients while others involved MPs. Bereavement practices offered by hospitals included memorial services, letters, and services provided by bereavement coordinators. Bereavement practices employed by MPs included answering or making phone calls, attending family meetings, and sending condolence letters. MPs' attendance at a patient's funeral was influenced by MPs' gender, age years of experience the medical specialty. Perceived benefits of MPs' attendance at a patient's funeral included providing support to the family, extending the professional relationship, illustrating respect to the patient and the family, resolving guilt and personal growth. Barriers to the attendance included a lack of time, blurring of professional boundaries, personal discomfort with death, emotional arousal, and discouragement by colleagues. General practice had an attendance rate of 71%. Attendance rates for palliative care, oncology, and psychiatrists ranged from 63% to 81%, 7.1% to 67%, and 15% to 67%, respectively. Intensivists had an attendance rate of 22%.
CONCLUSION: Several bereavement practices are provided by hospitals and MPs. Funeral attendance is an uncommon bereavement practice. MPs' attitudes toward attending a patient's funeral are understudied in many specialties. Patient factors that influence MPs' participation in bereavement practices are poorly understood.