Les trois auteures vivent chacune le deuil d'un enfant. Elles évoquent cette blessure ainsi que leur deuil. Elles expliquent comment elles ont pu avancer dans leurs vies malgré la souffrance, en découvrant que le lien créé avec leur fils dépasse les frontières de la mort.
Après le récit de la mort de son propre frère lorsqu'elle était enfant, la psychothérapeute Marie-Camille Carton de Wiart analyse divers témoignages de personnes ayant perdu un proche, recueillis au cours de sa pratique de spécialiste de l'accompagnement du deuil. Elle propose ensuite une démarche de méditation des textes bibliques destinée à accompagner ceux qui traversent cette épreuve.
This study aims to synthesize qualitative evidence about the bereavement experience of parents following the death of a child due to cancer. A qualitative metasynthesis was conducted from searching five databases. The search identified 650 articles that were independently assessed by two reviewers. Thirty-one articles were selected for full-text reading and assessed for eligibility; a total of 14 articles were included in the final sample and submitted to quality appraisal. The software NVivo® was used to organize the data and support the thematic analysis procedures. Two analytical themes were constructed: (1) losing a child and facing a rupture in identity and sense of life and (2) surviving grief and reengaging in life. The grief process was dynamic, continuous, and begun before the death of the child. Fathers and mothers reacted differently to the loss and experience of grief. The loss of a child definitively changed the parents' life and caused identity crisis and loss of life's purpose. During the process of survival, parents constructed new meanings that helped them cope with grief; they used strategies that allowed them to recover their sense of purpose in life. Synthesizing the experience of bereaved parents is essential to improve the support families of children with advanced cancer receive to better cope with their suffering and loss, before and after the child's death.
End-of-life decision-making is an important area of research, and few sociological studies have considered family grief in light of end-of-life decision-making in the hospital. Drawing on in-depth interviews with family members in the intensive care unit (ICU) during an end-of-life hospitalization and into their bereavement period up to six months after the death of the patient, this article examines bereaved family members' experiences of grief by examining three aspects from the end-of-life hospitalization and decision-making in the ICU that informed their subsequent bereavement experiences. First, this article explores how the process of advance care planning (ACP) shaped family experiences of grief, by demonstrating that even prior informal conversations around end-of-life care outside of having an advance directive in the hospital was beneficial for family members both during the hospitalization and afterwards in bereavement. Second, clinicians' compassionate caring for both patients and families through the "little things" or small gestures were important to families during the end-of-life hospitalization and afterwards in bereavement. Third, the transition time in the hospital before the patient's death facilitated family experiences of grief by providing a sense of support and meaning in bereavement. The findings have implications for clinicians who provide end-of-life care by highlighting salient aspects from the hospitalization that may shape family grief following the patient's death. Most importantly, the notion that ACP as a social process may be a "gift" to families during end-of-life decision-making and carry through into bereavement can serve as a motivator to engage patients in ACP.
Background: The health of caregivers can be affected during end-of-life caregiving. Previous cross-sectional studies have indicated an association between poor health status and prolonged grief disorder, but prospective studies are lacking.
Aim: To describe physical and mental health status in caregivers of patients at the end of life, and to investigate whether caregivers’ health status during caregiving predict prolonged grief disorder.
Design: A population-based prospective survey was conducted. Health status was measured in caregivers during caregiving (SF-36), and prolonged grief disorder was assessed 6 months after bereavement (Prolonged Grief-13). We calculated mean scores of health status and explored the association with prolonged grief disorder using logistic regression adjusted for age, gender and education.
Setting/participants: The health in caregivers of patients granted drug reimbursement due to terminal illness in Denmark in 2012 was assessed during caregiving and 6 months after bereavement (n = 2125).
Results: The SF-36 subscale ‘role-physical’ concerning role limitations due to physical health, the ‘mental health’ component score, and all ‘mental health’ subscales showed significantly worse health in the participants than in the general population. Both poor physical health (adjusted OR: 1.05 (95% CI: 1.04–1.07)) and poor mental health (adjusted OR: 1.09 (95% CI: 1.07–1.11)) predicted prolonged grief disorder.
Conclusion: Caregivers scored lower on one physical subscale and all mental health measures than the general population. Prolonged grief disorder was predicted by poor physical and mental health status before bereavement. Future research is needed on the use of health status in systematic assessment to identify caregivers in need of support.
BACKGROUND: While the majority of research assesses the impact of end-of-life dreams and visions (ELDVs) on patients, more recent research has begun to explore their impact on family caregivers (FCG).
OBJECTIVE: This study evaluates the relationship between general attitudes about dreams, perspectives of ELDV and their role the bereaved FCG experience.
DESIGN: Mixed-methods using a cross-sectional survey and five focus groups.
SETTINGS/SUBJECTS: A total of 500 FCGs of patients who died under hospice care were recruited for the survey. Focus group members were self-selected through identified interest from the survey.
MEASUREMENTS: In addition to demographics and ELDV prevalence, general attitude toward dreams, ELDV perspectives, and impact on grief were assessed using ad hoc surveys.
RESULTS: Participants reporting ELDVs were significantly more validating of everyday dreams (p < .001). Positive attitudes toward dreams strongly correlated with comfort from ELDVs for both patients and FCGs. Openness correlated positively with comfort from the ELDV for both the patient (r = .149, p = .038) and FCG (r = .217, p = 0.002) and negatively with fear/anxiety (r = -.141, p = 0.050). Negative ELDV perceptions (ex. ELDVs were caused by medications) affected grief in areas such as accepting the loss (r = -.235, p = .010) or maintaining connection (r = -.255, p = .010) with the deceased. Focus group discussions were thematically analyzed resulting in 4 themes: ELDV narrative, Connection, Reflection, and Other Experiences.
CONCLUSIONS: Positive general attitudes toward dreams and positive ELDV perceptions are correlated with better bereavement outcomes. Therefore, patient and family education on ELDVs that focuses on awareness and understanding of ELDVs may enhance clinical outcomes for both family and patients.
Research suggests variation in how grief develops across time, and gender may account for some of this variation. However, gender differences in growth patterns of the newly codified ICD-11 prolonged grief disorder (PGD) are unknown. This study examined gender-specific variances in grief trajectories in a registry-sampled cohort of 857 spousal bereaved individuals (69.8% female). Participants completed self-report questionnaires of PGD symptoms at 2, 6, and 11 months post-loss. Using Growth Mixture Modeling, four PGD trajectories emerged: resilient characterized by low symptoms (64.4%), moderate-stable characterized by moderate symptoms (20.4%), recovery characterized by elevated symptoms showing a decrease over time (8.4%), and prolonged grief characterized by continuous elevated symptoms (6.8%). Similar proportions of men and women comprised the four trajectories. Gender influenced the parameter estimates of the prolonged grief trajectory as men evidenced more baseline symptoms (higher intercept) than women did and a decreasing symptom-level (negative slope), while women showed symptom-increase over time (positive slope). The prolonged grief trajectory captured the largest proportion of probable PGD cases in both genders. Low optimism and low mental health predicted membership in this class. Altogether, the absolute majority of both men and women followed a low-symptom resilient trajectory. While a comparable minority followed a high-symptom prolonged grief trajectory, men and women within this trajectory expressed varying symptom development. Men expressed prolonged grief as an acute, decreasing reaction, whereas women showed an adjourned, mounting grief reaction. This study suggests that gender may influence symptom development in highly distressed individuals across early bereavement.
PURPOSE: Depression is the most common negative reaction among family caregivers of terminal cancer patients, persisting to post-bereavement. A modifiable factor associated with depression is mortality communication (i.e., caregiver-relative communication about illness and impending death). The purpose of this study was to examine the impact that mortality communication has on family caregiver's depression after bereavement, and to translate into Danish and examine the construct validity of the caregiver communication with patients about illness and death scale (CCID; Bachner et al. Omega 57(4):381-397, 2008).
METHODS: A total of 1475 Danish family caregivers (partners and adult children) of terminal cancer patients, in both general and specialized palliative care settings, participated in the study. Respondents completed questionnaires twice: during caregiving and 6 months after the death of their relative.
RESULTS: Results of the hierarchical regression analyses showed that discussing illness and death with one's ill relative was associated with fewer depressive symptoms after bereavement, adjusted for depressive symptoms in the final year of caregiving and socio-demographic characteristics. For both partners and adult children, each of the five CCID items contributed significantly to measurement of a mortality communication latent construct. Moreover, the relative contribution of all five items was consistent across caregiver groups supporting the reliability of measurement.
CONCLUSION: As in Hebrew, Arabic, and English, the CCID can be used with confidence among Danish family caregivers. Mortality communication is a significant factor that may predict depressive symptoms while caregiving and also after the care recipient's death. This factor should be considered for inclusion in early family caregiver interventions.
OBJECTIVE: This qualitative study sought to obtain feedback from stakeholder cancer caregivers and bereaved family members on the implementation of bereavement risk screening in oncology.
METHODS: Semi-structured interviews were conducted with 38 family members of patients with advanced cancer (n=12) and bereaved family members (n=26) on when and how to effectively implement bereavement risk screening. Data was analyzed using thematic analysis.
RESULTS: Many participants indicated that they would be open to completing a self-report screening measure before and after the patient's death. Several suggested screening at multiple timepoints and the importance of follow-up. Participants viewed screening as an opportunity to connect to psychosocial support.
CONCLUSIONS: The findings suggest that family members appear supportive of sensitively-approached bereavement risk screening before and after a patient's death as an important component of quality psychosocial care. To optimize implementation, bereavement risk screening would involve screening at multiple timepoints and include follow-up. Findings suggest standardized risk screening using a brief, validated self-report tool would be a pragmatic approach to increasing access to bereavement care.
Automne 1977 : Harry, trente-quatre ans, meurt dans des circonstances tragiques, laissant derrière lui sa fille de quinze mois. Avril 2019 : celle-ci rencontre une femme qui a connu Harry enfant, pendant la guerre d’Algérie. Se déploie alors le roman de ce père amoureux des étoiles, issu d’une grande lignée de médecins. Exilés d’Algérie au moment de l’indépendance, ils rebâtissent un empire médical en France. Mais les prémices du désastre se nichent au coeur même de la gloire. Harry croise la route d’une femme à la beauté incendiaire. Leur passion fera voler en éclats les reliques d’un royaume où l’argent coule à flots. À l’autre bout de cette légende noire, la personne qui a écrit ce livre raconte avec férocité et drôlerie une enfance hantée par le deuil, et dévoile comment, à l’image de son père, elle faillit être engloutie à son tour.
Roman du crépuscule d’un monde, de l’épreuve de nos deuils et d’une maladie qui fut une damnation avant d’être une chance, Saturne est aussi une grande histoire d’amour : celle d’une enfant qui aurait dû mourir, mais
qui est devenue écrivain parce que, une nuit, elle en avait fait la promesse au fantôme de son père.
BACKGROUND: When death ends a life, the impact of caring for person who suffered a period of illness or disease continues for significant others who are left to grieve. They should be offered support to avoid complicated grief. This can be provided in different ways and individually or in groups. This study aims to describe significant others' experiences of participation in bereavement groups.
METHODS: Ten bereavement groups that each met five times offered support for the significant others of deceased loved ones who had been cared for by a palliative-care team. After the five meetings, the grieving members (n = 46) completed written comments about the role of the groups; they also commented one year after participating (n = 39). Comments were analyzed with qualitative content analysis with a directed approach using the theory of a good death according to the 6S’s: self-image, self-determination, social relationships, symptom control, synthesis and summation, and surrender.
RESULTS: Bereavement groups were found to be a source for alleviating grief for some significant others, but not all experienced relief. Moreover, grief was found to persist during participation. Another finding involved the impact of the role of the palliative home-care team on bereavement support. To evaluate the experience of participating in a bereavement group, the use the 6S's as a model was a strength of the analysis. Bereavement groups could enhance the self and offer relief from grief. Participation was described as social relationships that offered a sense of coherence and understanding in grief. The effects of participation were more meaningful close to the loss and could lose efficacy over time. Bereavement support provided before a loved one's death was seen as valuable.
CONCLUSION: Overall, the bereavement groups eased the grief of significant others close to the death of their loved one. However, moving forward, several of the significant others were not sure that their participation eased their grief. To identify persons who may remain in a state of complicated grief, a routine of planned contacts with the bereaved should begin before death and be followed up later than six months after the death of a loved one.
Relationship strains between families and providers can have intense repercussions on the bereavement experience. Little is known about how to define and differentiate relationships within various interpersonal contexts and how those families manifest their bereavement. Therefore, the purpose of this study was to understand parental experiences about their relationships with providers at their child's end of life with cancer and describe the manifestations of their grief. In this hermeneutic study, data were collected through interviews with bereaved parents and observation of families and health care providers in the hospital setting. Parents variously experienced complex relationships characterized by support, collaboration, trust, silence, deterioration, hierarchy, and tolerating, which were interchangeable and varied overtime, as new meanings were incorporated into their experiences. Through better understanding of the nature of these relationships, nurses can provide leadership in research and practice for identifying consequences of their care.
AIMS: To test the feasibility of surveying bereaved next-of-kin in the South Island about their perceptions of end-of-life care for people over 18 years of age; to report results; and to identify issues for future research.
METHOD: The study used the VOICES (Views of Informal Carers Evaluation of Services) questionnaire from the UK, adapted for use in Aotearoa New Zealand. Identification of next-of-kin for all South Island deaths September-November 2017 was undertaken by a commercial firm specialising in such work. Addresses of next-of-kin were sought from the Electoral Roll, with 1,813 eligible people identified and 272 (15.0%) next-of-kin unable to be traced. Surveys were posted out once only, with options to complete by mail, online, by telephone or with a face-to-face interview.
RESULTS: Of the 1,541 surveys distributed, 514 (33.4%) were completed. Results confirmed the suitability of the locally modified VOICES instrument and research process. The quality of care overall was rated most highly in hospice or own home, but only a minority were able to die in these settings. Nevertheless, relatives indicated that most people died 'in the best place'.
CONCLUSIONS: The VOICES questionnaire is acceptable to respondents and there are viable methods for seeking a population sample. Aspects of the questionnaire require modification before wider use. The information obtained can help district health boards, hospices other healthcare providers, and consumers in planning for end-of-life care.
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.
Background: Research on what children wished they had done differently after their sibling's death has not been reported.
Objective: Examine what children wished they had/had not done, and their coping after a sibling's neonatal/pediatric intensive care unit/emergency department (NICU/PICU/ED) death.
Design: Qualitative data are part of a longitudinal mixed methods study of 6- to 18-year-olds interviewed at 2, 4, 6, and 13 months after a sibling's death.
Setting/Subjects: Ninety-five school-aged children and 37 adolescents (58% female; 30% Hispanic, 50% black, 20% white).
Measurements: Children responded to three open-ended questions: Thinking about your sibling's death, are there things you wish you (1) had done? (2) had not done? (3) What do you do to deal with your sibling's death? Conventional content analysis procedures were used.
Results: Children wished they had spent more time, talked and played more with their sibling, saved their sibling, taken care of their sibling more, and been able to see their sibling grow up. They wished they had not been mean/yelled at their sibling, complained/argued with mother about their sibling, and kept their feelings inside. Children coped by talking with family, friends, and the deceased; playing, reading, watching TV; avoiding thoughts about and remembering their sibling; crying, keeping calm, praying; living for their sibling. Resuming their usual activities, trying to be happy, and laughing also helped children cope.
Conclusions: Children commented more about what they wish they had done (n = 317) and less about what they wish they had not done (n = 107). Children talked to others and tried resuming usual activities to cope.
Purpose: The aim of this study was to gain more insight into the psychosocial well-being of the recently bereaved spouses who took care of their partners with cancer.
Method: A qualitative study was developed, taking a phenomenological approach. Eleven former caregivers and spouses of patients who died of cancer at, or after, the age of 64, participated in individual in-depth interviews. Only caregivers who were bereaved for a minimum of three months and maximum of one year were interviewed. The analysis of the data was based on the Qualitative Analysis Guide of Leuven.
Results: The first moments of bereavement included feelings of disbelief, regret and relief. A feeling of being overwhelmed during this time was reported by some, others sought distraction from their grief. Loneliness, emotional fluctuations and a sense of appreciation for the support of loved ones were dominant themes. Also, gratitude and the importance of consolation played a role in the participants' well-being. When participants addressed the matter of moving forward in life, most explained how they wanted to keep the memories of their partner alive while rebuilding their lives.
Conclusions: The present study offers insight into the experiences of the bereaved spousal caregiver and highlights the need of social support during the bereavement period. All participants expressed loss-oriented and restoration-oriented coping strategies. Also, loneliness is considered a dominant feeling throughout the bereavement period. Social contact can ease these feelings of loneliness through providing either distraction or possibilities to share the burden. This paper emphasized the importance of improving access to healthcare professionals during bereavement.
Background: While grief research has focused on death-related losses and distressed outcomes, contemporary findings suggest that role losses can lead to grief, and growth can accompany grief. The current study aimed to replicate and extend the Papa, Lancaster, & Kahler, 2014 study by: (1) assessing common loss responses (prolonged grief, major depression, posttraumatic stress) and role centrality among bereaved, divorced, and unemployed individuals, and (2) exploring posttraumatic growth and stress appraisals among loss groups.
Method: A cross-sectional online survey was completed by 372 recently bereaved, divorced, and unemployed individuals. Exploratory factor analysis assessed common loss responses in the bereaved group. In the sample, multiple regressions assessed the relationship between role centrality, stress appraisals, and outcome variables (prolonged grief, posttraumatic growth); correlational analysis assessed the relationship between posttraumatic growth and psychopathology variables; qualitative analysis assessed examples of posttraumatic growth.
Results: A subset of each loss group reported prolonged grief and posttraumatic growth. Prolonged grief was a distinct factor from major depression and posttraumatic stress. Role centrality and stress appraisals were significantly associated with outcome variables. There was a weak, positive relationship between posttraumatic growth and psychopathology variables.
Limitations: Limitations included convenience sampling and a cross-sectional study design, which precluded assessing responses over time. Strengths included replicating existing literature and incorporating a strength-based measure.
Conclusions: Prolonged grief can emerge from death-related loss and role loss. Also, posttraumatic growth can accompany prolonged grief. In clinical practice, loss can be conceptualized broadly beyond bereavement and addressed with the potential for posttraumatic growth.
In few periods in human history have bereavement and grief been on so many people's minds as they are today. As the coronavirus disease 2019 (COVID-19) ravages the world, we have seen many perish in a short time. Many have died alone because of requirements for physical distancing. Even more will succumb as COVID-19 continues to spread. Moreover, deaths from other causes, numbering over 50 million annually, are also happening amid physical distancing and other COVID-19-related challenges. The pandemic is affecting the way terminally ill patients are being cared for, when and how people are dying of other causes, and how bodies are being handled and bereavement rituals performed. The bereaved are required to grieve without the support of usual social and cultural rituals. Grieving is further encumbered by cascading life stressors deriving from policies needed to mitigate the pandemic. Though we are often heartened by human resilience in response to death and other hardships, for some, the burden of this pandemic will be too much. Among other mental health problems, we will likely see an increase in prolonged grief disorder. In this commentary, we review the new diagnosis of prolonged grief disorder and outline why we might anticipate increased rates of this condition on the heels of COVID-19, especially among older persons. We suggest ways we might mitigate this emerging problem.
Person-centered, family-oriented services are integral to palliative and end-of-life care. Effective communication with providers informs the quality of the dying experience for patients and how families fare in bereavement. This paper reports findings from a study exploring how communication and care in the later stages of an advanced illness influence family caregivers’ well-being in bereavement. A concurrent triangulation design was used to analyze data collected during semi-structured interviews with 108 recently bereaved caregivers from a single hospice agency in Western New York. Findings from this study suggest that family caregivers assume the role of interpreter and advocate while engaged in both formal and informal communication with health care providers at the end of care-recipients’ lives. Findings also suggest that families are more likely to feel emotionally prepared for loss and grief when health care providers are available to communicate in a concise, consistent, and compassionate manner. The results illuminate the important connection between communication during the transition from late-stage illness to end-of-life care and preparation for bereavement. The paper concludes with a discussion of how findings from this study align with recent concerted efforts to establish standards and competencies for social work education and practice in palliative care.
Background: Bereaved individuals are known to have greater health risks, such as insomnia, excessive alcohol intake, and depression. However, few studies have investigated the relation between these risks and bereavement outcomes, namely complicated grief (CG) and major depressive disorder (MDD). This study aimed to assess the relation between insomnia, changes in alcohol consumption, and CG or MDD.
Methods: A cross-sectional, self-report questionnaire survey was conducted between May and July 2014 on 20 acute hospitals, 133 inpatient palliative care units (PCUs), and 22 home hospice services. Questionnaires were sent to the bereaved family members identified by each institution.
Results: Data were obtained from 814, 7,291, and 1,018 family members from acute hospitals, PCUs, and home hospice services, respectively. Significant associations were found between CG or MDD and all sleep condition symptoms (OR: 1.48-12.88; all p<0.0001) and between changes in alcohol intake (OR: 1.63-3.55; all p<0.0001).
Limitations: The majority were family members who had lost a loved one to cancer in a PCU, the psychological health of nonresponders was unavailable, the results were based on self-report data, and no clinical assessment interviews were done; this could limit the generalizability of the findings.
Conclusions: Overall, 14% and 17% of the respondents reported increased and decreased alcohol consumption, respectively, and 46–61% reported experiencing insomnia. Interestingly, both increase and decrease in alcohol intake after bereavement were risk factors of possible CG or MDD. These results suggest that assessing sleep conditions and alcohol consumption might help prevent severe psychological impairments in bereaved individuals.