Le 24 juillet 2002 restera à jamais gravé dans la tête et le cour de Sylvie Bernier. Ce jour-là, son neveu Raphaël, cinq ans, s'est noyé sous ses yeux lors d'une randonnée en canot jusque-là très paisible sur la rivière Nouvelle, en Gaspésie. Un remous a fait chavirer l'embarcation dans laquelle prenait place l'enfant. Le petit Raphaël est resté coincé sous un embâcle. Cruelle ironie du sort : la plongeuse la plus célèbre du Québec, Sylvie Bernier, n'a pu le secourir.
La championne olympique a longtemps porté en elle ce deuil terrible, oscillant entre la tristesse et colère. Elle était habitée par surcroît par la culpabilité de ne pas avoir plongé pour tenter de dégager son neveu, même si le rapport du coroner confirme qu'elle serait morte aussi si elle l'avait fait, avalée à son tour par ce vortex. Dans ce récit bouleversant, Sylvie Bernier raconte comment elle a surmonté cette épreuve, depuis le chemin de Compostelle, étape essentielle de sa « guérison », jusqu'à son engagement à titre d'ambassadrice de « Nager pour survivre », de la Société de sauvetage, un programme destiné à apprendre aux enfants les habiletés nécessaires pour survivre à une chute en eau profonde.
It is important for the health care community to understand the impact of a child's death on parent functioning. Yet involving bereaved parents in research that enquires about such a stressful time in their life can potentially bring harm to them. The current study examines the perceived benefit and burden of parents participating in a survey exploring their perceptions of their child's end-of-life (EoL) and bereavement experiences. Parents whose child died from cancer or complications of cancer treatment were invited to complete a survey developed by pediatric psychosocial oncology professionals with input from bereaved parent advocates through a closed social media (Facebook) group. One hundred seventy-eight parents of children aged 0 to 37 years at death (median age 12 years) participated. More than three quarters of parents reported at least "a little benefit" and half reported at least "a little burden" associated with participation. Less burden was perceived by younger and female parents, parents of younger children, those who had felt prepared to meet their children's emotional needs at EoL, and those not using bereavement services at the time of the survey. With the increasing use of social media as a source for bereaved parents to receive and provide emotional support, it is important for clinicians and researchers to understand the perceived benefits and risks of participating in research about EoL experiences via online recruitment. Our findings suggest that the benefit and burden of online research participation may vary for bereaved parents, but further research is necessary to replicate the findings and explore ways to optimize the use of this approach.
Prolonged grief (PGD) is a potentially debilitating consequence of bereavement that is experienced by 7%-10% of bereaved individuals. In recent years, PGD has been the focus of increasing interest as it is associated with a range of significant negative physical and mental health outcomes. To date, however, there is little understanding of how impairment is associated with individual PGD symptom interactions. Network analysis is an innovative statistical approach that has been productively applied to examine how symptoms of psychopathology influence and reinforce each other. In this study, we examined the association between PGD symptoms and quality of life (QoL) impairments. Data from 215 bereaved individuals were used to construct networks comprising PGD symptoms and different facets of QoL. The results showed that PGD symptoms of meaninglessness and role confusion were linked with reduced psychological QoL, trust difficulties were linked with reduced social QoL, and bitterness was linked with reduced environmental QoL. These results are consistent with models that highlight the importance of self-identity and loss of meaning in PGD. By elucidating pathways of dysfunction, these findings offer clinical implications that may help to improve outcomes for persons with PGD.
It is not easy to characterize a problem patient or bereaved relatives because identifying a patient or his bereaved family as a problem; is not considered quite ethical. The approached emergency medical service employees and coroner service physicians were asked to complete a specific targeted anonymous survey. 100 % of survey questionnaires were returned. The questionnaire with a request for filling and returning was submitted to forty employees working full-time, twenty of whom were physicians, ten paramedics and ten lower-level healthcare professionals. The questionnaire comprised ten questions aimed at obtaining clear answers to questions about personal experience with problem patients, specifically aggressive patients, and more specifically whether the health care professionals (HCP) has ever felt immediately threatened by a patient in their work, whether they were exposed to verbal or even physical attack in the context of the patients basic diagnosis established during pre-hospital care. Seventy-five percent of respondents answered Yes to Question No. 5: Have you ever felt threatened by a patient or bereaved relative in your work? ; Eighty percent of respondents answered Yes to Question No. 6: Have you ever been exposed to a verbal attack by a patient or bereaved relative? Seventy-five percent of them answered Yes to Question No. 7: Have you ever been exposed to a physical attack by a patient? The rate of cases in which emergency medical service employees are exposed to verbal or physical attacks is high. The primary experience hypothesis that this happens has been proven as well as the fact that it is a highly topical and therefore unresolved issue that threatens the whole society with its social implications.
The death of a spouse is a highly stressful event. Better executive functioning has been shown to benefit men to a greater degree than women during stress. We evaluated potential sex differences in stress and immune dysregulation among control and bereaved participants who completed a self-report measure of perceived stress, neuropsychological measures of inhibition and updating/monitoring of information in working memory, and a blood draw to measure Epstein - Barr virus (EBV) antibody titers. Moderation analyses were conducted to test the hypothesis that better inhibition would be associated with less stress and immune dysregulation among male bereaved participants compared to female bereaved participants. Bereaved females demonstrated greater EBV antibody titers than bereaved males. Male bereaved participants benefited from better inhibition, as evidenced by fewer EBV antibody titers, while bereaved female participants did not. In the control group, males with high inhibition reported lower stress than males with low inhibition. Present study results are an important step towards identifying those at greatest risk of stress and poor health.
When a child loses a parent, their life is forever changed. A world that seemed safe and predictable suddenly becomes strange, frightening, and uncertain (Green & Connolly, 2009). In the time following the loss, it may be difficult for the child to imagine how to ever rediscover the joy of life and move past the loss. The loss of a parent is unfortunately not entirely uncommon, as Pearlman, Schwalbe and Cloitree (2010) report that about 4% of all children in the Western world lose one or both parents before the age of 18.
Using a sample of recently bereaved youth (N = 2,425; Mage = 15.31, SD = 1.50), this study examined associations between dimensions of religiousness and current functioning. Youth reported on their religious service attendance, religious coping, and the importance of religious beliefs and substance use, academic achievement, depressive symptoms, and self-esteem. Greater religious service attendance was associated with lower substance use and the greater importance of religious beliefs was associated with lower substance use and greater self-esteem. Greater religious coping was associated with greater academic achievement. Findings suggest distinct dimensions of religiousness may have differential implications for adolescent functioning after experiencing loss.
This article investigates longitudinal variations in grief, self-rated health, and symptoms of anxiety and depression among family caregivers in palliative care. Data were taken from a randomized psycho-educational intervention trial and were collected at four time-points; at baseline, upon completion, 2 months later, and 6 months after the patient’s death. In total, 117 family caregivers completed all questionnaires. The participants’ grief was stable across the measurements, while anxiety, depression, and health varied significantly (p < 0.05). No significant differences were found between the intervention or control group. In conclusion, grief emerged as a constant phenomenon, distinct from symptoms of anxiety and depression.
PURPOSE: Family communication is a known protective factor for minor children's psychological health following the death of a parent, but there is little research describing communication within such families specifically from the perspective of the children. The purpose of this study was therefore to explore communication in parentally bereaved families from the perspective of the children and surviving parent.
METHODS: Interviews with four parents and four children from four families were analyzed using inductive content analysis. Interviews took place in the family's home or at the research center based on the family's wishes 4-14 months after a parent had died. Interviews had an open approach and were based on an interview guide. Each interview was between 60 and 120 min long.
RESULTS: Four categories emerged which were related to family members' experiences of family communication while adjusting to their new circumstances as bereaved: the importance of open and honest communication in the family; new challenges in the family which affect communication; communicating the need for help; and talking about and remembering the deceased parent.
CONCLUSIONS: This study illuminates the connection between family communication and adjustments to new circumstances following the death of a parent. The results suggest that the relationship between family adjustment and communication may be circular whereby the family's ability to adjust to their new circumstances is affected by how the family communicates. Similarly, family communication may be affected by the family's coping strategies and ability to adjust to their new circumstances.
Grief and bereavement are universal human experiences that do not discriminate based on sex, gender, or sexual orientation. Existing literature provides valuable insight into the bereavement experiences of persons who identify as heterosexuals, but much less can be found on persons who identify as lesbian, gay, bisexual, or transgender/queer* (LGBT*). Given that the historical experiences of loss and personal characteristics such as interpersonal, familial, and social patterns of coping with grief are likely to influence the bereavement process, this study focused on the impact of partner bereavement on the interpersonal relationships and subsequent partnerships of the LGBT* bereaved. To this end, the purpose of this study was to use a mixed-methods approach to better understand how LGBT* persons described their experiences with partner bereavement and to identify what effect these experiences had on interpersonal relationships and subsequent partnerships.
BACKGROUND: Legacy-making (i.e., a way for patients with terminal illness to create or do something for others as a means of remembrance) is rising in popularity in palliative medicine, although only one study has examined its impact in a pediatric population.
OBJECTIVE: In response to the gaps in literature, this study (1) examines the impact of legacy artwork on bereaved caregivers' psychological functioning and grief and (2) compares caregivers' perceptions of support provided by the hospital throughout their child's cancer journey between the intervention and control groups.
METHODS: Forty-four caregivers whose children died of cancer completed a demographic questionnaire specifically created for this study, the Brief Symptom Inventory-18, and the Prolonged Grief Disorder-13. They also answered questions regarding supportive services provided to them toward the end of the child's life, at the time of death, and after the child's death. Those caregivers who endorsed participating in legacy artwork were identified as the intervention group, whereas those who did not were classified as the control group.
RESULTS: There were no significant differences in psychological functioning among caregivers who participated in legacy artwork versus those who did not participate. However, caregivers who created legacy artwork with their child reported significantly less symptoms of prolonged grief and a greater perception of support from health care providers compared with caregivers who did not engage in this activity.
CONCLUSION: Although preliminary, these findings suggest that legacy artwork may have the potential to improve grief and overall satisfaction of support from the hospital in bereaved caregivers.
BACKGROUND: Young adults represent a minority in research; they are often considered too young or too old for participation. There is sparse information, especially in bereavement research, regarding how this age group perceives research participation and what they consider beneficial or harmful.
AIM: To explore how parentally bereaved and nonbereaved young adults perceive research participation.
DESIGN: Qualitative analysis of free-text comments collected in a Swedish nation-wide survey.
SETTING/PARTICIPANTS: Parentally cancer-bereaved and nonbereaved young adults between 18 and 25 years old living in Sweden.
RESULTS: Five categories were identified from the free-text comments, three among the cancer-bereaved: (1) therapeutic to remember the deceased, (2) valuable to help others and improve care, and (3) short-term distressful-long-term beneficial, and two among the nonbereaved: (1) increased reflection and awareness about life, and (2) an opportunity to help others.
CONCLUSIONS: It is important to invite young adults to participate in bereavement research. The results suggest that potential harm is minimal and that participating in bereavement research can have a beneficial effect on young adults.
BACKGROUND: While bereavement is associated with increased mortality, it is unclear how bereaved families utilize the healthcare system after the death of their loved ones.
OBJECTIVE: The aim of this study was to examine the association between bereavement and healthcare expenditures for surviving spouses.
METHODS: We used data from the Health and Retirement Study, a nationally representative cohort study of older adults linked to Medicare claims. We determined a spouse's total Medicare expenditures 2 years before and after their partner's death across six biennial interview waves. Using coarsened exact matching, we created a comparison group of non-bereaved dyads. Costs were wage index- and inflation-adjusted to 2017 dollars. We used generalized linear models and difference-in-differences (DID) analysis to calculate the average marginal effects of bereavement on Medicare spending by gender. We also examined subgroup differences based on caregiver status, cause of death, and length of terminal illness.
RESULTS: Our sample consisted of 941 bereaved dyads and a comparison group of 8899 matched dyads. Surviving female spouses (68% of the sample) had a $3500 increase in spending 2 years after death (p < 0.05). Using DID analyses, bereavement was associated with a $625 quarterly increase in Medicare expenditures over 2 years for women. There was no significant increase in post-death spending for male bereaved surviving spouses. Results were consistent for spouses who survived at least 2 years after the death of their spouse (70% of the sample)
CONCLUSIONS: Bereavement is associated with increased healthcare spending for women regardless of their caregiving status, the cause of death, or length of terminal illness. Further study is required to examine why men and women have different patterns of healthcare spending relative to the death of their spouses.
The objectives of this study were to explore the goodness of fit between the bereaved peoples' needs and the support offered by their social networks; to ascertain whether this support was experienced as helpful or unhelpful by bereaved people; and to explore both the types of social networks that offer effective support and the characteristics of the communities that encourage and nurture such networks. This study was based on qualitative interviews from twenty bereaved people, in Western Australia, interviewed in 2013. A framework analysis of these interviews was undertaken using a deductive approach based on the goodness of fit framework. Much of this support is provided informally in community settings by a range of people already involved in the everyday lives of those recently bereaved; and that support can be helpful or unhelpful depending on its amount, timing, function and structure. Improving the fit between the bereaved person's needs and the support offered may thus involve identifying and enhancing the caring capacity of existing networks. An important strategy for achieving this is to train community members in mapping and developing these naturally occurring networks. Some such networks will include relationships of long standing, others may be circles of care formed during a period of caring. Peer support bereavement networks develop from these existing networks and may also recruit new members who were not part of the caring circle. The findings endorse social models of bereavement care that fit within a public health approach rather than relying solely on professional care. As exemplified by Compassionate Communities policies and practices, establishing collaboration between community networks and professional services is vital for effective and sustainable bereavement care.
INTRODUCTION: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss.
METHODS: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss.
RESULTS: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief.
CONCLUSION: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.
BACKGROUND: Bereaved parents may be at higher risk to develop persistent, severe and disabling grief, termed prolonged grief. Grief rumination, repetitive thinking about the causes and consequences of the loss, is a malleable cognitive process that maintains prolonged grief. Grief rumination can be measured with the Utrecht Grief Rumination Scale (UGRS). The present study aimed to examine the psychometric properties of the new Swedish version of the UGRS in a sample of bereaved parents.
METHODS: A Swedish nationwide postal survey including measures of demographic and loss-related variables, grief rumination (UGRS), and symptoms of prolonged grief, posttraumatic stress, anxiety, depression, and insomnia, was completed by 226 parents (133 mothers and 93 fathers) who lost a child to cancer in the past five years. Psychometric properties of the UGRS were examined through confirmatory factor analyses (CFA), reliability analyses, and assessment of UGRS score associations with symptoms of prolonged grief, posttraumatic stress, depression, anxiety, and insomnia.
RESULTS: The internal consistency of the Swedish UGRS was good. The CFA yielded an acceptable fit for a two-factor hierarchical model with five sub-factors. Grief rumination was positively associated with all psychopathology symptom measures. Higher scores on UGRS were found in parents with possible prolonged grief disorder compared to those without (d = 1.47). Moreover, the Swedish UGRS was associated with prolonged grief symptoms over and above loss-related and demographic variables and other psychopathology symptoms.
CONCLUSIONS: The Swedish UGRS demonstrated good psychometric properties, which supports its use as a measure to assess grief rumination in Swedish bereaved parents in research and practice.
BACKGROUND AND OBJECTIVES: According to the Dual Process Model (DPM), shifting between loss-oriented (LO) and restoration-oriented (RO) coping is essential for adjustment following bereavement. Knowledge about how LO and RO coping change over time and how such changes are related to adjustment is missing. With a prospective design this study investigated (1) relations between levels of LO/RO coping and selected outcomes and (2) changes in LO/RO coping across time and their relations to adjustment.
METHODS: A sample of 145 spousal bereaved individuals completed questionnaires measuring LO and RO coping, grief symptoms, positive affect, and attachment orientation approximately 2-3 months (baseline) and 7 months (follow-up) post-loss.
RESULTS: High usage of LO coping was associated with poorer outcomes and high usage of RO coping was associated with better outcomes at both baseline and follow-up. Individuals generally shifted towards more RO coping across time and those who exhibited this shift showed lower levels of grief at follow-up compared to individuals who changed towards more LO coping across time.
CONCLUSIONS: Individuals showing more RO coping reported better adjustment both early and later in the bereavement process. Changes in coping orientation over time might be useful for understanding complicated grief reactions following loss.
Background: Persistent complex bereavement disorder (PCBD) is a disorder of grief that newly entered DSM-5. Prolonged grief disorder (PGD) is a disorder of grief included in ICD-11. No prior studies examined and compared the dimensionality, prevalence, and concurrent validity of both conditions among bereaved children.
Methods: With data from 291 help-seeking bereaved 8–18 year old children, we used confirmatory factor analysis to evaluate the fit of different factor models for PCBD and PGD. In addition, we determined diagnostic rates for probable PCBD and PGD and calculated associations of PCBD and PGD caseness with concurrently assessed symptoms of overall disturbed grief, depression, posttraumatic stress, and parent-rated problem behavior.
Results: For PCBD and PGD, one-factor models—with all symptoms forming a unidimensional factor of disturbed grief—fit the data best. The prevalence of probable DSM-5 PCBD (3.4%) was significantly lower than ICD-11 PGD (12.4%). Both PCBD and PGD were significantly associated with concurrently assessed overall disturbed grief, depression, and posttraumatic stress; associations with parent-rated problems were moderate.
Limitations: Findings were based on self-reported ratings of symptoms, obtained from three different scales not specifically designed to assess PCBD and PGD. The use of a help-seeking sample limits the generalization of findings to bereaved children generally.
Conclusions: Findings support the validity of DSM-5 PCBD and ICD-11 PGD. Prevalence rates of both constructs differ. This needs further scrutiny.