Lorsqu’on accompagne une personne arrivant en fin de vie, qui souffre d’un Alzheimer, ou se retrouve en soins palliatifs, comment anticiper le deuil tout en respectant la personne ? Comment accompagner le mourant en lui apportant le soutien qu’il attend ? Comment accompagner un proche en fin de vie ? Comment traverser un deuil ? Comment accepter la séparation ?
Autant de questions auxquelles cet ouvrage tente de répondre.
This study systematically reviewed the methodology and findings of 19 peer-reviewed studies on the experience of bereavement among widowed Latinos, including risk and protective factors to the health of this vulnerable population. Of these studies, 10 included quantitative data, 3 were qualitative studies, and 6 were narrative reviews. Results emphasized the relevance of cultural beliefs about death, rituals, religion, and Latino values (i.e., familismo, respeto, simpatía, personalismo) as common themes in the included studies, along with expressions of grief (e.g., Ataque de nervios, somatization) that vary by gender and acculturation. Risk factors associated with diminished well-being in this population included being a male, financial strain, cultural stressors, having an undocumented legal status, experiencing widowhood at a younger age, and having poor physical health. Effective coping strategies identified included having adequate social support primarily from family, religion and religious practices, the use of folk medicine, volunteering, and the use of emotional release strategies. Moreover, the results highlight that researches informing the health needs of widowed Latinos in the US is limited, and studies with enhanced methodological rigor are needed to better understand the complex needs of this vulnerable population.
Introduction: the aim of this article was to conduct a systematic review in order to find information that enables a connection between chronic pain and the grieving process to be established, beyond the intuitive relationships that connects them.
Methods: The medical literature was reviewed in search of articles that provide some evidence of the connection between chronic pain and grief.
Results: the available information on both topics by themselves is profuse but there are very few publications that deal with both issues simultaneously.
Conclusions: The connection between chronic pain and grief has been mentioned intuitively as a condition taken for granted. However, little evidence of this relationship has been published, which suggests that this topic has not been widely researched.
PURPOSE: Oncologists cope with unique work characteristics that increase their risk of developing compassion fatigue-that is, burnout and secondary traumatic stress-and can result in reduced capacity and interest in being empathetic to the suffering of others (Stamm B. The concise ProQOL manual, 2010). At the same time, oncologists can experience compassion satisfaction-that is, the positive aspects of caring. This study explored the associations of compassion fatigue and compassion satisfaction with oncologists' grief and sense of failure beyond their reported exposure to suffering and death.
METHODS: Seventy-four oncologists completed self-administered questionnaires examining compassion fatigue, compassion satisfaction, grief, exposure to suffering and death, and sense of failure.
RESULTS: The oncologists reported that they face the loss of approximately 50% of their patients, and that their patients suffer from profound emotional and physical pain. High levels of compassion fatigue and grief, and moderate levels of sense of failure, were reported. Findings showed a lack of association between exposure to suffering and death and compassion fatigue and satisfaction. However, grief and sense of failure were found to predict both aspects of compassion fatigue: secondary traumatic stress (p < 0.001, p < 0.003, respectively) and burnout (p < 0.002, p < 0.025, respectively).
CONCLUSIONS: These results highlight the importance of the oncologists' subjective experiences of grief and sense of failure, beyond their reports of exposure to suffering and death, in terms of their levels of compassion fatigue. Implications of these findings include the need to develop interventions for oncologists that will allow them to acknowledge, process, and overcome negative experiences of failure and grief.
PURPOSE: Bereavement research has helped to improve end-of-life practices in the ICU. However, few studies have explored bereaved relatives experience of research participation in this context. We aimed to explore the experience of bereaved relatives' participation in the ARREVE study which included three telephone follow-up calls to complete several quantitative tools.
METHODS: Volunteer relatives who participated in the 12-month follow-up call completed a questionnaire about research participation that included ten open-ended questions so that respondents could use their own words and thoughts. These open-ended questions were analyzed using qualitative analysis that examines themes within the data.
RESULTS: 175/311 relatives completed the questionnaire. Three themes were derived from the thematic analysis: (1) struggling: reactivation of emotional distress associated with the ICU experience and the loss is frequent, specifically during the 1st follow-up call. (2) Resilience: as time goes by, research participation becomes increasingly positive. The calls are a help both in giving meaning to the relatives' experience and in accepting the loss. (3) Recognition: research calls can compensate for the absence of support during bereavement.
CONCLUSION: Although some emotional difficulties must be acknowledged, bereavement research is overall associated with benefits, by facilitating emotional adjustments, meaning-making and resilience. Lack of support and social isolation during bereavement are frequent experiences, revealing that support strategies for bereaved relatives should be developed after the loss of a loved one in the ICU.
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.
There are multiple well-established evidence-based treatments for posttraumatic stress disorder (PTSD). However, recent clinical trials have shown that combat-related PTSD in military populations is less responsive to evidence-based treatments than PTSD in most civilian populations. Traumatic death of a close friend or colleague is a common deployment-related experience for active duty military personnel. When compared with research on trauma and PTSD in general, research on traumatic loss suggests that it is related to higher prevalence and severity of PTSD symptoms. Experiencing a traumatic loss is also related to the development of prolonged grief disorder, which is highly comorbid with depression. This study examined the association between having traumatic loss-related PTSD and treatment response to cognitive processing therapy in active duty military personnel. Participants included 213 active duty service members recruited across two randomized clinical trials. Results showed that service members with primary traumatic loss-related PTSD (n = 44) recovered less from depressive symptoms than those who reported different primary traumatic events (n = 169), B = -4.40. Tests of mediation found that less depression recovery suppressed recovery from PTSD symptoms in individuals with traumatic loss-related PTSD, B = 3.75. These findings suggest that evidence-based treatments for PTSD should better accommodate loss and grief in military populations.
The present work sought to explore grief patterns among Chinese older people in rural areas as well as the factors influencing the diverse bereavement results. Participants were 352 older residents who lived in rural areas in China. Latent profile analysis was used to identify subtypes of class membership in combing complicated grief, depression, anxiety, and meaning in life. One-way analysis of variance, chi-square analysis, and multinomial regression analysis were performed together to examine the predictor best distinguishing between classes. The latent profile analysis model best fitting the data was a three-class solution comprised of adaptive (n = 235; 66.8%), moderate maladaptive (n = 83; 23.6%), and severe maladaptive groups (n = 34; 9.7%). Compared to the severe maladaptive and moderate maladaptive groups, participants in the adaptive group had better physical functioning. Participants in the moderate maladaptive group had longer bereavement duration than those in the severe maladaptive group. Future replication is desirable for validating these subgroups.
Buddhist Chaplains chanting sutras after the Great East Japan Earthquake in 2011 often encountered survivors who felt that hearing sutra chanting itself ameliorated their bereavement grief. This research is the first experimental examination of the effects of sutra chanting on listeners' bereavement stress. Prior research demonstrates that sudden pet loss causes bereavement stress in students and that physiological stress can be noninvasively measured by salivary alpha-amylase. We asked Japanese college students to raise pet goldfish until they developed an attachment to them, then confiscated the fish, and told the students that they had to be killed. To compare the bereavement stress of groups listening and not listening to sutra chanting, we used psychological and salivary analyses. Perceived Stress Scale (PSS), Multidimensional Empathy Scale (MES), and State half of the State Trait Anxiety Inventory (STAI) psychological scales showed no statistically significant differences between sutra and control groups, but salivary analyses indicated measurable stress reduction in the sutra-listening group only. This pilot study tentatively confirmed the hypothesis that listening to Buddhist sutra chanting reduces Japanese bereavement stress. Further research is needed both to verify these stress-reduction effects and to determine whether such effects are primarily musical or cultural/spiritual.
Cet article a été élaboré dans le cadre d’un groupe de travail au sein de l’équipe ressource régionale de soins palliatifs pédiatriques d’Île-de-France Paliped, qui a choisi de mener une réflexion sur l’annonce du décès d’un camarade à des enfants polyhandicapés au sein de leur établissement. Cet écrit expose l’idée que ces enfants peuvent supporter la nouvelle, à condition qu’ils soient soutenus au moment de l’annonce et tout au long de la période où les effets de cette annonce se déploient. C’est ainsi que l’annonce peut être pensée comme le point de départ d’un processus d’appropriation qui se décline jusqu’au temps du deuil. L’enjeu spécifique pour ces enfants tient dans l’ajustement extrême que les professionnels doivent mettre en œuvre pour rester auprès d’eux quand un évènement grave vient bouleverser leur vie. L’objectif de cet article est de partager une déclinaison spécifique de la clinique de l’annonce, pensée comme la clinique de l’ajustement individuel, de la contenance groupale, de l’inscription dans la communauté humaine à travers la souffrance partagée et le souvenir.
D'un style élégant et maîtrisé, Jean-Pierre Gautheur met en mots le deuil, le manque et l'amour, immense et blessé, qui remplissent le coeur de ceux qui ont perdu un être cher.
[Extrait résumé éditeur]
We aimed to identify practitioners’ perspectives on current research priorities in grief and bereavement care. Grief and bereavement care providers were invited to participate in a three-phase Delphi study to create expert consensus on the top priorities for grief and bereavement research. A total of 140 participants completed Phase 1, 84 completed Phase 2, and 70 completed Phase 3. These top 10 research priorities form the basis of a practice-based research agenda for grief and bereavement care to enable researchers to respond to key issues in grief and bereavement care that will ultimately improve the lives of bereaved people.
To reduce response burden for bereaved children and adolescents, we provide data on the development and psychometric testing of a short form of the Hogan Sibling Inventory of Bereavement (HSIB). The resulting measure of grief symptoms and personal growth was renamed the Hogan Inventory of Bereavement – Short Form (Children and Adolescents; HIB-SF-CA). Psychometric properties were evaluated in a sample of 86 bereaved siblings. Instrument development and validation research design methods were used. Evidence of strong reliability and convergent validity indicates that the 21-item HIB-SF-CA is comparable to the original 46-item HSIB in measuring grief and personal growth in this population.
Bereavement care practice guidelines assist in delivering high-quality bereavement care. However, the quality of published guidelines is unknown. A systematic review was conducted to identify and evaluate the quality of the process used to develop bereavement care practice guidelines using the Appraisal of Guidelines for Research and Evaluation (AGREE II) instrument. A keyword search was conducted in MEDLINE-Complete, CINAHL-Complete, Health-Source (Nursing/Academic Edition), Psychology and Behavioral Sciences Collection, and an internet search engine in October 2017. Sixteen guidelines with differing scope and purpose but similar core values were identified from the grey literature and then appraised at high quality (n = 1), moderate quality (n = 4), or low quality (n = 11). The domains "clarity of presentation" and "scope and purpose" achieved the highest scores (mean ± SD 71.0 ± 27.6% and 64.4 ± 37.5%, respectively), while "editorial independence" showed the lowest mean score (9.2 ± 13.3%). While few of the bereavement care practice guidelines met the AGREE II quality standards related to their development process, neither the quality of the content of each guideline nor the in-context application was assessed by the AGREE II instrument. Ongoing development of practice guidelines may benefit from consideration and application of the framework outlined in the AGREE II or similar appraisal instrument.
Parentally bereaved children and adolescents are at risk of developing psychological health problems. Evidence for a correlation between communication and broad measures of psychological health exists in other populations. The aim of this study was to examine associations between family communication and specific aspects of psychological health for children and adolescents following a parent’s death from cancer using parent-proxy and adolescent self-reports. Parent-proxy reports for children and adolescents, and adolescent self-reports for Parent–Adolescent Communication, Strengths and Difficulties Questionnaire, and Prolonged Grief-13 child were analyzed using descriptive statistics and Spearman’s correlation. Parents rated communication as moderate in quality and reported good psychological health for children and adolescents. Adolescent self-reports indicated low-quality communication with their parent and poor psychological health. Significant associations between Parent–Adolescent Communication subscales and Strengths and Difficulties Questionnaire subscales were found for each group. Prolonged grief was associated with emotional problems but not communication for all three groups.
Background: End-of-life dreams and visions (ELDVs) are prevalent experiences that provide comfort and meaning to dying individuals. Limited research has examined the impact of ELDVs on the bereaved.
Objective: This study aimed to explore differences in self-reported grief for people whose loved ones shared ELDVs and those who did not, and to describe the role of ELDVs in the grieving process.
Design: Mixed-methods cross-sectional survey.
Settings/Subjects: A total of 228 bereaved family caregivers (FCGs) of patients who died while under the care of a comprehensive hospice program were recruited.
Measurements: Demographics and ELDV prevalence were collected. Bereavement was assessed using the Core Bereavement Items (CBI) a validated measure. Impact on grief was also evaluated using an ad hoc tool.
Results: Comfort from dreams significantly related to total CBI score (r = 0.224, p = 0.047) as well as the images and thoughts (r = 0.258, p = 0.025) and acute separation subscales (r = 0.224, p = 0.047). Comfort from dreams had a positive relationship with accepting the reality of loss (r = -0.511, p < 0.001), working through the pain of grief (r = -0.556, p < 0.001), adjusting to the new environment (r = -0.405, p = 0.001), and continuing bonds (r = -0.538, p < 0.001). CBI scores were not significantly different between caregivers who reported loved ones with ELDVs and others. Open-ended responses were thematically analyzed resulting in three emergent themes: comfort, reflection and emotions, and sense-making.
Conclusions: ELDVs' impact extends beyond those experiencing them to bereaved loved ones. Bereaved FCGs report that comforting ELDVs experienced by their dying loved ones influenced their grief process in terms of the Worden's tasks of mourning.
Purpose: This study uses the newly developed Bereaved Cancer Needs Inventory to identify the unmet psychosocial needs of adolescents and young adults who have experienced the death of a parent or sibling to cancer, and to explore the relationship between unmet needs and psychological distress.
Methods: In total, 278 bereaved offspring and 38 bereaved siblings (12–25 years) completed the 58-item Bereaved Cancer Needs Inventory (BCNI) and the Kessler psychological distress scale (K10).
Results: Bereaved offspring reported 27 unmet needs on average (SD = 16.87, range: 0–58); 94% indicated at least one unmet need, with 80% indicating 10 or more needs. Bereaved siblings reported 23 unmet needs on average (SD = 17.30, range: 0–57); 97% indicated at least one unmet need, with 68% indicating 10 or more needs. For both bereaved offspring and siblings, the needs for “support from other young people” and “time out and recreation” were most frequently reported as unmet. Approximately half of all participants reported high to very high levels of psychological distress. There was a significant positive relationship between the number of unmet needs and the psychological distress score on the K10 for both groups.
Conclusions: Bereaved offspring and bereaved siblings report unmet psychosocial needs across many domains, which are associated with their levels of psychological distress. Findings suggest the BCNI may be used by healthcare professionals to identify unmet needs and direct clients to the appropriate services, resources, or support; with the intent to reduce their risk of mental illness and psychological distress.