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.
Objective: To describe the landscape of digital resources available for grief and bereavement, and to explore cultural variations through the analysis of patterns in three languages with a multinational repartition (English, French and Spanish).
Methods: For each language, websites were collected through a systematized approach and classified according to their category (governmental, health, educational, social media, conventional media, spiritual), their country of origin, and the type of support they offered (practical support, services, peer support, informational support, resources).
Results: A total of 2587 websites (English: 1003; French 678; Spanish: 906) were analyzed. Cultural variations were observed both for the websites’ categories and the types of support. Half of the websites presented at least one type of support, informational support being the most prevalent, followed by practical support. English websites presented significantly more support than Spanish websites, with French websites in between.
Practice implications: By using an extensive survey, our results allow for a general mapping of online websites that is comparable across languages, but also unveil digital dynamics unknown to date. These results further the multicultural understanding of digital support for grief and bereavement, propose an innovative and operational typology for online support and raise awareness of the current support landscape.
Context: Keepsakes are a relatively unexplored form of bereavement support that is frequently provided as part of the 3 Wishes Project (3WP). The 3WP is a palliative care intervention in which individualized wishes are implemented in the adult intensive care unit for dying patients and their families.
Objectives: We aimed to characterize and enumerate the keepsakes that were created as part of the 3WP, and to understand their value from the perspective of bereaved family members.
Methods: We performed a secondary analysis of family interviews during a multi-center study on the 3WP and characterized all wishes that involved keepsakes. Sixty interviews with family members regarding the 3WP were re-analyzed using qualitative analysis to identify substantive themes related to keepsakes.
Results: Of 730 patients, 345 (47%) received keepsakes as part of their participation in 3WP. The majority of keepsakes were either tangible items that served as reminders of the patient’s presence (thumbprints, locks of hair) or technology-assisted items (photographs, word clouds). The median cost per keepsake wish was $8.50 (IQR $2.00-$25.00). Qualitative analysis revealed two major themes: 1) Keepsakes are tangible items that are highly valued by family members, and 2) The creation of the keepsake with clinical staff is valued and viewed as a gesture of compassion.
Conclusion: Keepsakes are common wishes that clinicians in the ICU are able to provide and sometimes co-create with families when patients are dying. Both the offering to create the keepsake and receipt of the final product are perceived by family members as helpful.
Context: Cancer is the leading cause of nonaccidental death in childhood, with the death of a child representing a devastating loss for families. Peer support offers a valuable way to support parents' adjustment in bereavement. The By My Side book provides written peer support by sharing bereaved parents' stories to normalize grief experiences and reduce parents' isolation. It is available free of charge.
Objectives: This project evaluated the acceptability, relevance, emotional impact, and usefulness of By My Side.
Design: Bereaved parents and health care professionals (HCPs) provided feedback via a questionnaire. We used descriptive statistics and qualitative analysis of open-ended responses to analyze the data.
Setting/Participants: We mailed a study invitation and evaluation questionnaire to parents and HCPs who ordered a copy of By My Side.
Results: About 24 bereaved parents and seven HCPs provided feedback. Parents thought the book's length (91.7%) and amount of information (83.3%) was just right. About 75% of parents reported that the book made them feel that their reactions to their child's death were normal and/or appropriate. Parents reported positive and negative emotional reactions to the book (e.g., 87.5% felt comforted, 87.5% felt sadness). All parents and HCPs reported that the book provided useful information about grief. About 83.4% of parents and 85.7% of HCPs would recommend it to others.
Conclusion: By My Side was acceptable and useful to bereaved parents and HCPs. Results suggest that peer support in written form may help normalize aspects of grief and comfort parents bereaved by childhood cancer.
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."
BACKGROUND: Bereavement support is a key component of palliative care, with different types of support recommended according to need. Previous reviews have typically focused on specialised interventions and have not considered more generic forms of support, drawing on different research methodologies.
AIM: To review the quantitative and qualitative evidence on the effectiveness and impact of interventions and services providing support for adults bereaved through advanced illness.
DESIGN: A mixed-methods systematic review was conducted, with narrative synthesis of quantitative results and thematic synthesis of qualitative results. The review protocol is published in PROSPERO ( www.crd.york.ac.uk/prospero , CRD42016043530).
DATA SOURCES: The databases MEDLINE, Embase, PsycINFO, CINAHL and Social Policy and Practice were searched from 1990 to March 2019. Studies were included which reported evaluation results of bereavement interventions, following screening by two independent researchers. Study quality was assessed using GATE checklists.
RESULTS: A total of 31 studies were included, reporting on bereavement support groups, psychological and counselling interventions and a mix of other forms of support. Improvements in study outcomes were commonly reported, but the quality of the quantitative evidence was generally poor or mixed. Three main impacts were identified in the qualitative evidence, which also varied in quality: 'loss and grief resolution', 'sense of mastery and moving ahead' and 'social support'.
CONCLUSION: Conclusions on effectiveness are limited by small sample sizes and heterogeneity in study populations, models of care and outcomes. The qualitative evidence suggests several cross-cutting benefits and helps explain the impact mechanisms and contextual factors that are integral to the support.
BACKGROUND: There is a reliance on voluntary organisations in healthcare. Education is necessary to keep up-to-date with best practice. The authors' aim was to identify education priorities of voluntary organisations that support parents who experience pregnancy/perinatal loss, to inform the development of an education day.
METHOD: A modified Delphi study was undertaken to identify education needs. There were two Delphi rounds, inclusive of free text, where voluntary group experts reflected on responses in order to develop a consensus among the group.
RESULTS: There were 12 responses to Round One and seven responses to Round Two. From a list of 10 subjects, Round One identified 64 sub-topics, which were then determined as essential, desirable or not relevant in Round Two. The final 55 sub-topics were included in the education day.
CONCLUSION: This study identified educational needs of voluntary organisations. A standardised approach was necessary to develop an education day that is responsive to their learning needs.
Traditional Chinese art practices such as brush painting and calligraphy are thought to promote self-development through holistically engaging both physical and mental health. This pilot study investigated the beneficial effects of a community-based self-help group incorporating Chinese art practices as a culturally adapted bereavement intervention. Twenty-six Chinese parents aged over 49 years and who had lost their only child participated in a 20-session Chinese brush painting group over a 6-month period. Ten bereaved parents from the same community who did not participate in the art course but received living support were recruited as a control group. Compared with the control group, the art practice group exhibited a pre-post intervention effect in terms of promoting positive affect and preventing deterioration of prolonged grief symptoms, particularly through the improvement of accessory grief symptoms (e.g., "emotional numbness due to the loss", and "feeling that life is unfulfilling, empty or meaningless after the loss"). No effect was found on negative affect. These findings indicate that a culturally adapted community-based art group may be an effective means of improving grief-related health.
Introduction: The aim of this study was to investigate the current status of bereavement follow-up in Japanese emergency departments.
Methods: This study employed a cross-sectional design and conducted a nationwide survey of all emergency departments in Japan. Self-reported questionnaires were sent to the nurse leaders of each emergency department.
Results: of 289 nurse leaders approached, 145 (50.2%) responded. Only 17.9% emergency departments provided bereavement follow-up strategies, and the most frequent strategy was referral to a specialist for psychological treatment. Most nurse leaders perceived that bereavement follow-up is necessary, and the greatest need of the bereaved as perceived by the nurse leaders was explanation of the patient’s death. However, 60% of the nurse leaders perceived bereavement follow-up to be necessary but difficult, and the major challenges in bereavement follow-up were lack of time, knowledge, and skill.
Conclusion: in contemporary Japan, the prevalence of bereavement follow-up strategies offered by emergency departments was low, and although most nurse leaders perceived follow-up as necessary, it could not be provided because of limitations in human resources and staff training.
While great strides have been made in improving childhood mortality, millions of children die each year with significant health-related suffering. More than 98% of these children live in low- and middle-income countries (LMICs). Efforts have been made to increase access to pediatric palliative care (PPC) services to address this suffering in LMICs through policy measures, educational initiatives, and access to essential medicines. However, a core component of high-quality PPC that has been relatively neglected in LMICs is grief and bereavement support for parents after the death of their child. This paper reviews the current literature on parental grief and bereavement in LMICs. This includes describing bereavement research in high-income countries (HICs), including its definition, adverse effect upon parents, and supportive interventions, followed by a review of the literature on health-related grief and bereavement in LMICs, specifically around: perinatal death, infant mortality, infectious disease, interventions used, and perceived need. More research is needed in grief and bereavement of parents in LMICs to provide them with the support they deserve within their specific cultural, social, and religious context. Additionally, these efforts in LMICs will help advance the field of parental grief and bereavement research as a whole.
Deaths due to COVID-19 are associated with risk factors which can lead to prolonged grief disorder, post-traumatic stress and other poor bereavement outcomes among relatives, as well as moral injury and distress in frontline staff. Here we review relevant research evidence, and provide evidence-based recommendations and resources for hospital clinicians to mitigate poor bereavement outcomes and support staff. For relatives, bereavement risk factors include dying in an intensive care unit, severe breathlessness, patient isolation or restricted access, significant patient and family emotional distress, and disruption to relatives' social support networks. Recommendations include advance care planning; proactive, sensitive and regular communication with family members alongside accurate information provision; enabling family members to say goodbye in person where possible; supporting virtual communication; providing excellent symptom management and emotional and spiritual support; and providing and/or sign-posting to bereavement services. To mitigate effects of this emotionally challenging work on staff, we recommend an organisational and systemic approach which includes access to informal and professional support.
The COVID-19 pandemic is anticipated to continue spreading widely across the globe throughout 2020. To mitigate the devastating impact of COVID-19, social distancing and visitor restrictions in health care facilities have been widely implemented. Such policies and practices, along with the direct impact of the spread of COVID-19, complicate issues of grief that are relevant to medical providers. We describe the relationship of the COVID-19 pandemic to anticipatory grief, disenfranchised grief, and complicated grief for individuals, families, and their providers. Furthermore, we provide discussion regarding countering this grief through communication, advance care planning, and self-care practices. We provide resources for health care providers, in addition to calling on palliative care providers to consider their own role as a resource to other specialties during this public health emergency.
Bereavement care is considered an integral component of quality end-of-life care endorsed by the palliative care movement. However, few hospitals and health care institutions offer universal bereavement care to all families of patients who die. The current COVID-19 pandemic has highlighted this gap and created a sense of urgency, from a public health perspective, for institutions to provide support to bereaved family members. In this article, drawing upon the palliative care and bereavement literature, we offer suggestions about how to incorporate palliative care tools and psychological strategies into bereavement care for families during this pandemic.
Mortality from coronavirus disease 2019 (COVID-19) increases with age, and those over 80 are particularly vulnerable (Verity et al.,2020). Most national data on COVID-19 will underestimate mortality in older people. Triage and resource allocation protocols (Truog et al.,2020), and our understanding that it is often in the best interests of the frail older person to remain in their usual place of residence, may result in many deaths occurring outside of hospitals,particularly in care homes where these data may not be routinely collected.
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The loss of a family member or friend can have profound psychological and physical implications, particularly for individuals without bereavement support services. Online support groups can be an effective means of extending services beyond the traditional modes of delivery. This is especially true for populations that include isolated individuals and those with limited support networks, limited transportation, challenging time commitments, or reside in communities with limited services available. The literature over the last 10 years was reviewed to discern the potential opportunities and challenges of providing online bereavement support group services. Discussed are challenges for recruitment of participants, availability of technology resources, addressing privacy and confidentiality issues, participants’ knowledge of technical equipment, legal considerations, ethical considerations, accessibility, and other best practices. Diverse populations such as adolescents, older adults, and rural communities must be uniquely considered when using online support groups.
Objective: Bereavement care is one of the major components of hospice palliative care. Previous studies revealed the barriers to the success of the system, including lack of time or support from mental health professionals. Few studies have explored the intrapersonal barriers to bereavement care by clinical staff. The aims of the study were to explore (1) the emotional and cognitive barriers of bereavement care by hospice palliative care staff and (2) the demographic and work characteristics related to these emotional and cognitive barriers.
Method: The participants were clinical staff (n = 301) who were working in hospice palliative care units, including hospice wards, home care, and hospital-based palliative care teams. Their professional backgrounds included physicians (n = 12), nurses (n = 172), social workers (n = 59), psychologists (n = 34), spiritual care specialists (n = 15), and others (n = 9). A cross-sectional design was used and a standardized questionnaire including emotional and cognitive barriers was developed. Information on demographic and work characteristics was also collected. Content validity index, an exploratory factor analysis, and multiple regression analysis were conducted.
Results: One emotional barrier, “negative emotional reactions” (13 items, Cronbach's a = 0.92), and three cognitive barriers, “lack of ability” (7 items, Cronbach's a = 0.85), “belief in avoidance” (5 items, Cronbach's a = 0.86), and “outcome expectancy” (4 items, Cronbach's a = 0.85) were identified. Clinical staff who had higher working stress, lower self-rated ability for bereavement care, and higher negative impact from major life loss tended to have higher emotional and cognitive barriers.
Significance of results: Clinical staff should be aware of intrapersonal barriers to bereavement care. Educational programs should be developed to improve the ability to engage in bereavement care.
Mortality rates in adult critical care settings can range from 10% to 29%. This leaves a contingent of family members enduring the impact of a loved one's death in the intensive care unit (ICU). Family-centered care (FCC) guidelines in critical care advocate for addressing both the patients' and families' needs and values, which includes bereavement care. Therefore, the purpose of this literature review is to provide direction for bereavement care through evaluating common components of bereavement programs and help guide ICU professionals in bereavement program planning and development.
Lucie a quatre ans de moins que Camille, sa soeur chérie. Elles ont perdu leur père et elles s'adorent. Camille a un cancer du pancréas, rare, fulgurant, elle meurt. C'est une conversation d'amour déchirant les souvenirs heureux, le cauchemar, puis la chute. Lucie sera sauvée par la bienveillance d'une association d'aide au deuil pour les jeunes, une résurrection.
Boléro le lapin et Musette l'oursonne sont inséparables. Quand Musette meurt, Boléro reste tout seul et n'a plus goût à rien. Mais peu à peu, au rythme des saisons, et grâce aux autres animaux de la forêt, Boléro redécouvre la saveur des choses simples et la force de l'amitié.
Avec beaucoup de sensibilité, on découvre les différents sentiments de Boléro au fil des jours après la mort de Musette. Le partage avec les autres animaux tient une place importante dans l'histoire qui aidera Boléro jusqu'à la fin de l'histoire.