Dans ce livre III des Tusculanes, Cicéron, en deuil de sa fille, évoque en disciple des stoïciens la mort, la douleur, le chagrin, s’exhortant à surmonter sa peine par la réflexion et la maîtrise de soi.
BACKGROUND: Family caregivers provide the majority of care for people with Parkinson's disease (PD) in the palliative care phase. For many this is a demanding experience, affecting their quality of life.
OBJECTIVE: We set out to map the experiences of bereaved family caregivers during the period of informal care in the palliative care phase as well as after the death of their loved one with PD.
METHODS: Ten bereaved family caregivers participated in this qualitative study. Semi-structured interviews were conducted and interpretative phenomenological analysis was used executed.
RESULTS: We identified four main themes. 1) Feeling like a professional caregiver: while caring for a person with PD, the family caregivers took over many roles and tasks of the person with PD.2) Healthcare professionals do not always know what PD really means. Most interviewees had negative experiences with knowledge and understanding of PD of, especially, (practice) nurses. 3) Being on your own: many respondents had felt highly responsible for their loved one's care and lacked time and space for themselves. Grief and feelings of guilt were present during the caregiving period and after death. 4) Being behind the times: to provide palliative care in line with patients' preferences and to feel prepared for the palliative care phase of PD, proactive palliative care planning was considered important. However, the interviewees told that this was most often not provided.
CONCLUSION: These findings indicate that caring for a person with PD in the palliative care phase is a demanding experience for family caregivers. They experience psychological problems for many years before and after the death of the person with PD. Increasing healthcare professionals' awareness of family and bereaved caregivers' needs may mitigate these long-term detrimental effects.
Palliative care (PC) focuses on caring for the whole person, from birth to death, while managing symptoms and helping to navigate medical complexities. Care does not stop at the time of death, however, as assisting patients, families, and fellow clinicians through grief and bereavement is within PC's purview. Unfortunately, many clinicians feel unprepared to deal with these topics. In this article, PC and hospice clinicians define and explain bereavement, distinguish normative grief from pathological grief, offer psychometrically sound scales to screen and follow those suffering from grief, and discuss the interaction between grief and bereavement and the physical and mental health of those who are left behind after the death of a loved one.
Although there is an increased need for delivery of bereavement care, many health care providers in acute care hospital settings feel inadequately prepared to deliver quality grief support, have lack of time, and have inexperience in provision of bereavement care. As a result, although families would like health care providers to offer bereavement support, they are inadequately trained and susceptible to burnout, resulting in families not having their needs met. The purpose of this qualitative study was to uncover the social process occurring in a bereavement education workshop titled "How to Care, What to Say" offered to health care providers. The goal of the workshop was to improve delivery of care for the dying and their family by providing holistic care to the family before, during, and after the death of a loved one. Past grief workshop participants who cared for the bereaved were interviewed, and data were analyzed and synthesized using constructivist grounded theory. Individual interviews and focus group data revealed participants' perceptions, learnings, and potential integration of the workshop into practice. The overarching theory of providing bereavement care that emerged from the data is "a relational process of understanding knowledge, self-awareness, moral responsibilities, and advancing grief competencies of providing holistic grief support."
A population survey finds that bereaved people draw upon diverse sources of support in their communities, from both formal services and informal networks of care. The formal service most frequently recognised by participants is provided by funeral directors. We outline some reasons for this, and explore one particular theme, memorialisation, in which funeral providers have traditionally been a lead discipline. Significant changes in memorialisation over recent decades challenge today’s funeral industry, but also draw our attention to underlying social changes reshaping our understanding not only of bereavement care but of care in general. Bereavement support is most effective when provided collaboratively by formal and informal care providers, but collaboration is challenged by policies that continue to privilege formal services over informal care. This challenge of developing constructive, respectful and complementary collaborations between formal and informal care is not peculiar to bereavement care, but is a social policy imperative for contemporary societies.
De nombreux parents prennent conscience qu'il n'est pas facile de parler en famille de l'expérience douloureuse de la perte d'un bébé avant la naissance. C'est ce qu'ont vécu les trois mamans, auteurs et illustratrice de ce petit livre. Elles l'ont conçu pour aider des parents à partager des moments d'échange et d'intimité avec leurs enfants, lorsqu'ils ont des questions exprimées ou implicites après une telle épreuve.
Leur ouvrage sera une aide précieuse pour parler de cette souffrance avec les enfants de six à dix ans.
La mort d’un d’enfant provoque chez les parents une douleur incommensurable. À travers le témoignage d’une mère endeuillée, nous suivrons le long travail de séparation permettant d’atténuer cette souffrance. Nous verrons comment la théorie classique sur le deuil, élaborée par Freud, ne peut éclairer de façon satisfaisante la spécificité du deuil d’enfant.
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.
OBJECTIVE: Oncologists are exposed to suffering, loss, and death, which can potentially lead to grief reactions. Although grief over patients may be a natural consequence of the close and longstanding oncologist-patient relationship, the empathy that oncologists feel towards their patients may put them at risk for compassion fatigue (CF). This study examined the mediating role of the two components of CF - secondary traumatic stress (STS) and burnout - in the relation between empathy and grief among oncologists.
METHOD: Participants included 71 Israeli oncologists. Measures consisted of a demographic questionnaire, the Texas Revised Inventory of Grief-Present, the Interpersonal Reactivity Index, and the Professional Quality of Life questionnaire.
RESULTS: Oncologists reported moderate levels of grief, and relatively high levels of both STS and burnout. In addition, they reported high levels of the three components of empathy: perspective-taking, empathic concern, and personal distress. The PROCESS SPSS macro revealed support for the mediation model. The mediators (STS and burnout) fully accounted for the relationship between the following two components of empathy - perspective-taking and personal distress - and grief.
CONCLUSIONS: Oncologists commonly experience grief over patients. We found that oncologists' grief was related to their empathy, and that this association was explained by their levels of CF. The current research may mark a step toward recognizing oncologists' grief as well as understanding the processes associated with it.
Objectives: In Australia, 15-20% of pregnancies result in miscarriage, and 0.69% in stillbirth. Pregnancy loss is a distressing experience for parents, with many turning to their own parents for support. Pregnancy loss has been identified as an ambiguous loss, leading to disenfranchised grief. However little research has been conducted regarding grandparents’ experiences following pregnancy loss. Much of what is known comes indirectly from family studies of grief and loss. This study aimed to explore grandparents’ experiences of loss and grief, following a child’s pregnancy loss.
Design: grounded theory approach using a qualitative inductive thematic analysis research design was employed. Individual participant interviews provided the data for analysis which was conducted using a six-step approach.
Methods: Interviews were conducted with 14 grandmothers. Interviews were semi-structured, with open-ended questions. Thematic Analysis was applied using Braun and Clarkes’ (2013) approach to analysis.
Results: Five themes were identified: Pregnancy loss is a grief like no other, Excited anticipation - then nothing, Ambiguity following pregnancy loss exacerbates grief, Grief is isolating, Multiple losses, changed family relationships, and Ceremonies and mementoes: Tangible, with lasting benefits for grandparents.
Conclusions: Early access to information and guidance, ongoing peer support with flexible delivery options, and involvement in memory making activities could reduce ambiguity and disenfranchisement. Increasing community education and participation in raising awareness was identified as a way for grandparents to honour their loss and support others. Further research could explore grandfathers’ experiences, the longer-term outcomes for grandparents and families, and the impact of support strategies.
Grounded in work on health narratives of public figures, an online survey (N = 305) explored amplification of Carrie Fisher's mental health advocacy following her death through sharing about mental health on SNSs. Parasocial relationship (PSR) to Fisher and grief in response to her death both predicted greater sharing about mental health on social network sites, but parasocial grief fully mediated the influence of PSR on social sharing. Prosocial motivations (pleasure, pressure) moderated the relationship between parasocial grief and social sharing. In a separate analysis, parasocial grief predicted greater exposure to both media about mental health and media that mourned/celebrated Fisher. Mental health-related media exposure mediated the influence of parasocial grief on social sharing, but this mediation occurred only among people who were not aware of Fisher's mental health advocacy prior to her death.
BACKGROUND: Some people experience exceptionally severe bereavement grief, and this level of post-death grief could potentially be the result of a low quality dying process.
AIMS: A pilot study was conducted to determine if a relationship exists between perceived death quality and bereavement grief intensity.
METHODS: A questionnaire was developed and posted online for data on bereavement grief intensity, perceived death quality, and decedent and bereaved person characteristics. Data from 151 Canadian volunteers were analysed using bi-variate and multiple linear regression tests.
FINDINGS: Half had high levels of grief, and over half rated the death as more bad than good. Perceived death quality and post-death grief intensity were close to being negatively correlated.
CONCLUSION: These findings indicate research is needed to explore possible connections between bereavement grief and the survivor's perceptions of whether a good or bad death took place. In the meantime, it is important for palliative care nurses to think of the quality of the dying process as being potentially very impactful on the people who will be left to grieve that death.
Background: Despite technological innovations and continuous improvement in evidence-based treatments, mortality in the intensive care unit (ICU) remains high. Consequently, a large group of family members may be in need of, and could benefit from, bereavement follow-up support.
Aims and Objectives: To explore the elements, organization, and evaluation of ICU bereavement services in European countries. Specific objectives were to investigate: (a) the model of bereavement follow-up services (elements of support), (b) the workforce model (organization of staff), and (c) the evaluation model (evaluation strategies).
Design: This was a cross-sectional survey of conference delegates.
Methods: A paper-and-pen questionnaire, including a cover letter assuring the respondents of anonymity and confidentiality, was distributed to 250 delegates during the opening ceremony of the 2017 European federation of Critical Care Nurses associations Congress in Belfast. The questionnaire was developed from a previously validated tool describing bereavement care practices in ICUs, including questions about the content and organization of bereavement follow-up services. Frequencies were calculated using yes/no questions, and content analysis was applied in additional free-text comments.
Results: We received 85 responses from publicly employed nurses, mainly in mixed adult ICUs. Respondents were 48 (56.5%) bedside nurses, and the remaining respondents represented clinical nurse specialists, researchers, managers, or academic nurses. Bereavement follow up had existed for about 1 to 15 years. Important follow-up elements were: viewing the deceased in the unit, 77 (90.6%); providing follow-up information, 67 (79.8%); sending a letter of sympathy, 17 (20%); and calling the family to arrange a meeting, 27 (31%).
Conclusions: Bereavement follow up is common but variable in European ICUs. We recommend the development, implementation, and evaluation of evidence-based, but culture-specific, bereavement follow-up guidelines for European ICUs.
Relevance to clinical practice: More critical care nurses are realizing the need for bereavement follow-up guidelines. This paper provides an overview of common elements that might be considered.
Perinatal loss, including fetal and infant death, is a devastating experience for parents, resulting in long-term adverse physical and psychosocial outcomes. However, little is known about what services might best support grieving parents. We aimed to understand the role of professional bereavement photography in assisting the grieving process of parents who have lost a fetus or infant, by examining the perspectives of bereaved parents, professional photographers, and health care professionals. Twenty semistructured interviews were conducted, and interview transcripts were analyzed using modified grounded theory. Twenty-three individuals participated, including 6 bereaved parents, 8 photographers, and 9 health care professionals. Analyses generated 5 major themes describing ways in which the photographs were valuable to parents: validation of the experience, permission to share, creation of a permanent and tangible legacy, creation of positive memories, and moving forward after the loss. Hospitals should consider incorporation of professional bereavement photography services into palliative care and bereavement programs.
Background: The death of a child can have significant emotional effects on doctors responsible for their care. Trainee doctors working in the paediatric intensive care unit (PICU) may be particularly vulnerable. The aim of this study was to examine the emotional impact of, and grief reactions to, a child's death in PICU trainee doctors, along with coping strategies they used.
Methods: In a prospective, cross-sectional, observational study, qualitative and quantitative data were recorded on anonymised, written questionnaires. Grief severity was assessed using the Texas Revised Inventory of Grief. Emotional impact was assessed using the shortened Impact of Event Scale. The BriefCOPE tool was used to assess coping strategies. Qualitative data was analysed using conventional content analysis. Data are presented as median (inter-quartile range) or number (%).
Results: All invited trainee doctors (23 anaesthetists; 5 paediatricians) completed the questionnaire (age, 30 [29-34] yr; 13/28 [46%] female). Two (7%) doctors experienced severe grief (Texas Revised Inventory of Grief score <39), with five (18%) doctors severely affected by the deaths as measured by the Impact of Event Scale. Qualitative analysis revealed prominent themes of sadness, helplessness, guilt, shock, and concern for the bereaved family. There was limited use of coping strategies. Speaking with another trainee doctor was the principal coping strategy. Requests for debriefing sessions, greater psychological support and follow-up with the patient's family were frequently suggested.
Conclusions: Paediatric deaths evoke significant grief and emotional reactions in a subset of PICU trainee doctors. Trainee PICU doctors highlighted a lack of professional support and tailored debriefs.
Termination of pregnancy after diagnosis of fetal anomaly (TOPFA) is a contested issue and stigma may negatively impact affected women's psychological reactions. This study examined the influence of perceived and internalized stigma on women's long-term adjustment to a TOPFA. One hundred forty-eight women whose TOPFA dated back 1 to 7 years responded to self-report questionnaires. The associations between perceived stigma at the time of the TOPFA, current internalized stigma and symptoms of grief, trauma and depression were modeled using multiple linear regression. The proportion of participants reporting scores above the cutoffs on the respective scale was 17.6% for grief, 18.9% for posttraumatic stress, and 10.8% for depression. After controlling for time since the TOPFA, pre-TOPFA mental health and obstetric variables, higher levels of current internalized stigma were related to higher levels of grief, trauma, and depression. Mediation analyses suggested that the effect of perceived stigma at the time of the TOPFA on symptoms of grief and trauma was mediated by current internalized stigma, but the cross-sectional design limited causal interpretation of results. Internalized stigma is associated with long-term psychological distress following a TOPFA. Perceived stigma at the time of the TOPFA may contribute to increased trauma and grief symptomatology, but results need to be validated in longitudinal studies. Health care providers and public initiatives should aim at reducing stigma among affected women.
This article explores the relationship between grief and best friendship (BF) dynamics among adolescent girls. Based on a qualitative interview study with 10 Danish girls, findings suggest that bereavement affects friendship dynamics in ways that challenge the by-standing friend in succeeding with being and staying supportive. Through a thematic analysis, we identify 12 themes that cut across the case stories, all of which testify to the difficulties bereavement represent to friendship quality and maintenance. Among other issues, it seems like grief is contagious and the bereaved friend changes her way of responding to the by-standing friend in ways that disturb expectations, values, and virtues of BF among girls in adolescence. The general categories found to be characteristic for long-term BFs, that is, positivity, supportiveness, openness, and interaction are all affected by bereavement in adolescent BFs among girls.
Background: Critical care consensus groups recommend providing bereavement support; however, little is known about what cardiac intensive care patients' families would find useful and beneficial in their grieving process.
Aim and objectives: To describe cardiac intensive care unit (ICU) patients' families' opinions on six common components of a bereavement programme.
Design: Qualitative, exploratory and descriptive.
Methods: Families were recruited from a cardiac ICU 13-15 months after their loved one's death. Families were interviewed using a semi-structured questionnaire. The research team analysed interview transcripts to assess and categorize families' opinions on six bereavement components.
RESULTS: Twelve family members were interviewed. Most were female (n = 8, 67%), spouses (n = 10, 83%) and white (n = 10, 83%), with a mean age (SD) of 58.4 years (16.7). Families' overall opinions of the bereavement brochure were positive, stating it was helpful in providing information about the grieving process. Families described the sympathy card as "meaningful" and "touching," although they rated it neutral in providing comfort. Most participants felt that a follow-up telephone call was unnecessary except to answer lingering questions they had. Many participants favoured the unit offering counselling services because they found therapy helpful in their grieving process. Participants had mixed feelings about a memory box; they believed it was an individual preference and should be handled in a sensitive manner. Most would not have attended a memorial service if offered because of traffic, distance, concerns about stressful feelings on returning to the hospital or because they already honoured their loved ones through a personalized memorial service.
Conclusions: Participants varied in their opinions about what bereavement services may be useful; however, this study provides insight about services that cardiac critical care units may consider when adding bereavement support.
Relevance to clinical practice: Family perspectives about bereavement needs can help structure services offered by critical care units.