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De Leo, Diego, Benedetta Congregalli, Annalisa Guarino, Josephine Zammarrelli, Anna Valle, Stefano Paoloni, and Sabrina Cipolletta. "Communicating Unexpected and Violent Death: The Experiences of Police Officers and Health Care Professionals." International Journal of Environmental Research and Public Health 19, no. 17 (September 3, 2022): 11030. http://dx.doi.org/10.3390/ijerph191711030.
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Background: The notification of unexpected and violent death represents a challenging experience for police officers and health workers. These professionals are exposed to very intense emotions during this task. Aim: We aimed to investigate the degree of preparation, and the emotions and attitudes of police officers and health professionals while communicating such a death. Method: An ad hoc online questionnaire was created and disseminated through Qualtrics software. The participants were recruited through the institutional channels of Police, the College of Physicians, the ONG De Leo Fund and the Department of General Psychology of the University of Padua. In this qualitative study, thematic content analysis was used to examine the responses. Results: A total of 155 individuals participated in the study (44 females, 111 males): 102 individuals were police officers, 23 were doctors and were 30 nurses. Five main themes were identified: (1) how the communication took place; (2) the experiences during the communication; (3) the difficulties encountered; (4) coping strategies, and (5) forms of support. Most communications were performed in person, and most represented an intense emotional experience for the notifiers. There is a generalised lack of specific preparation and training for this practice. The recipient’s characteristics (culture of origin, language, age, health conditions, psychological vulnerability) may add to the difficulties of the notification process. Professionals unload their tension by practicing sport, relying on their hobbies or interacting socially. The presence of other colleagues during and after the death notification is usually able to alleviate the burden of the communication. Conclusions: Communication modalities can have a profound impact on the recipients and intensify the trauma of the loss; however, they also have the possibility of mitigating it. The notification of a violent and unexpected death remains a difficult and challenging task for the notifier, which is potentially stressful and emotionally charged. The topic is of great relevance and more research should be promoted in this area.
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Gearing, Amanda. "Post-disaster recovery is a marathon, not a sprint: The need for a state-sponsored recovery scheme." Pacific Journalism Review : Te Koakoa 24, no. 1 (July 17, 2018): 52–68. http://dx.doi.org/10.24135/pjr.v24i1.402.
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This study explores the recovery experiences of survivors of a flash flood event, five years after a natural disaster in South East Queensland. In-depth interviews were conducted with 33 of the original cohort of 120 post-disaster interviewees who experienced sudden traumatic bereavement and/or their own near-death experience. The data reveals that many of the survivors and rescuers were in worse—or far worse—situations than they had been in the weeks and months immediately after the disaster. Interviewees identified the worsening of their situation as being caused by systems failures by civil authorities, health care systems, welfare programmes and the insurance industry. Further research is recommended to assess the needs of people affected by natural disasters and the viability of a state-funded recovery scheme that could expedite personal, family and community recovery. The proposed scheme is based on the Queensland WorkCover scheme that scaffolds recovery and return to work for injured workers.
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Dennis, Brittany, Meredith Vanstone, Marilyn Swinton, Daniel Brandt Vegas, Joanna C. Dionne, Andrew Cheung, France J. Clarke, et al. "Sacrifice and solidarity: a qualitative study of family experiences of death and bereavement in critical care settings during the pandemic." BMJ Open 12, no. 1 (January 2022): e058768. http://dx.doi.org/10.1136/bmjopen-2021-058768.
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BackgroundPandemic-related restrictions are expected to continue to shape end-of-life care and impact the experiences of dying hospitalised patients and their families.ObjectiveTo understand families’ experiences of loss and bereavement during and after the death of their loved one amidst the SARS-CoV-2 (COVID-19) pandemic.DesignQualitative descriptive study.SettingThree acute care units in a Canadian tertiary care hospital.ParticipantsFamily members of 28 hospitalised patients who died from March–July 2020.Main outcome measuresQualitative semistructured interviews conducted 6–16 months after patient death inquired about family experiences before and beyond the death of their loved one and garnered suggestions to improve end-of-life care.ResultsPandemic restrictions had consequences for families of dying hospitalised patients. Most family members described an attitude of acquiescence, some framing their experience as a sacrifice made for the public good. Families appreciated how clinicians engendered trust in the name of social solidarity while trying to mitigate the negative impact of family separation. However, fears about the patient’s experience of isolation and changes to postmortem rituals also created despair and contributed to long-lasting grief.ConclusionProfound loss and enduring grief were described by family members whose final connections to their loved one were constrained by pandemic circumstances. Families observed solidarity among clinical staff and experienced a sense of unity with staff, which alleviated some distress. Their suggestions to improve end-of-life care given pandemic restrictions included frequent, flexible communication, exceptions for family presence when safe, and targeted efforts to connect patients whose isolation is intensified by functional impairment or limited technological access.Trial registration numberNCT04602520; Results.
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Antinienė, Dalia, and Žydrūnė Kaklauskaitė. "“What is worse than death?”: experience of critical events among physicians." Baltic Journal of Sport and Health Sciences 4, no. 111 (2018): 2–11. http://dx.doi.org/10.33607/bjshs.v4i111.672.
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Background. It is noticeable that doctors’ avoidant behavior while dealing with emotional consequences of critical events not only lowers physician’s quality of sleep (Kahn, Sheppes, & Sadeh, 2013), brings them less satisfaction with the results of their work (Gleichgerrcht & Decety, 2013), but also worsens medical care as they provide poorer services related to the patient (Austin Saylor, & Finley, 2017; Meier, Back, & Morrison, 2001). The lack of scientific publications shows that this topic is underresearched and relevant. The purpose of the study is to reveal physicians’ experience of critical events. Methods. Five practicing physicians of anesthesiology-reanimatology and surgery participated in the qualitative part of the research. The data was collected using semi-structured interview and processed using inductive thematic Braun & Clarke (2006) analysis. Results. Qualitative analysis revealed the complicated experiences in a physician’s workplace, which doctors described as: taking responsibilities in the presence of a patient’s death, the risk of burnout and negative emotions experienced after a critical event. The analysis also emerged techniques used in dealing with emotions after critical events and consequences of the latter in one’s personal life. Conclusions. The study revealed that physicians in their work environment come across difficulties such as risk of burnout, balancing between formal and informal communication with patients and emotional strain which is caused by facing a patient’s death. Doctors tend to cope with negative emotions that emerge during critical events using various methods, but the most elucidated technique was the avoidance to deal with emotions. Analysis also revealed that experiences, gained through medics’ work, modify their attitude towards life and death and change the emotional connection between a physician and his relatives.
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Kwilecki, Susan. "Twenty-First-Century American Ghosts: The After-Death Communication—Therapy and Revelation from beyond the Grave." Religion and American Culture: A Journal of Interpretation 19, no. 1 (2009): 101–33. http://dx.doi.org/10.1525/rac.2009.19.1.101.
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AbstractThis paper examines a recent arrival on the American pop cultural scene, a type of ghost encounter called After-Death Communications (ADCs). Delivered in dreams, visions, voices, odors, coincidences, etc., these cheerful greetings from deceased loved ones help bereaved survivors cope with their loss. Since the Enlightenment, spirits of the dead have become increasingly irrelevant to collective life. The new phantoms, however, are assigned roles in the family, health, and faith. How has this occurred? Strands of a complicated process are delineated, including medical origins in the bereavement hallucination, a designated symptom of grief. Cultural dynamics behind the current ADC phenomenon are contrasted with national trends that shaped the nineteenth-century spiritualist enthusiasm for ghosts. The literature, published since the 1990s, is reviewed in which the ADC has been formalized as a source of bereavement therapy and revelation. A tally of the peculiar features and functions of this twenty-first-century ghost experience links it to two American industries, psychotherapy and spiritual seeking.
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Cawley, Paul, and Ela Chakkarapani. "Fifteen-minute consultation: Therapeutic hypothermia for infants with hypoxic ischaemic encephalopathy—translating jargon, prognosis and uncertainty for parents." Archives of disease in childhood - Education & practice edition 105, no. 2 (July 10, 2019): 75–83. http://dx.doi.org/10.1136/archdischild-2017-314116.
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Hypoxic ischaemic encephalopathy may lead to death or severe long-term morbidity. Therapeutic hypothermia (TH) increases survival without impairments in childhood, but prognostic uncertainty may remain for years after birth. Clear and accurate communication is imperative but challenging. This article explores the predictive value of routinely performed assessments during TH, as well as the qualitative research relating to parental experience. This article will benefit paediatric trainees, consultants and nurse practitioners in providing: (1) the background information needed for initiating a conversation with parents regarding outcome and (2) optimising their communication with parents in translating jargon, prognosis and uncertainty.
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Waldrop, Deborah P., Robert A. Milch, and Judith A. Skretny. "Understanding Family Responses to Life-Limiting Illness: In-depth Interviews with Hospice Patients and Their Family Members." Journal of Palliative Care 21, no. 2 (June 2005): 88–96. http://dx.doi.org/10.1177/082585970502100204.
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Understanding family dynamics is a key component in providing comprehensive care for persons with progressive illnesses and their caregivers. The purpose of this study was to investigate what families experience during an advancing illness and to describe their patterns of response. In-depth interviews (n=108) were conducted with families two weeks after hospice admission. Interviews were tape recorded, transcribed, and analyzed using qualitative methods. Six modes were distilled: reactive (illness generates intense responses), advocacy (vulnerability ignites assertive actions), fused (illness and decline are shared experiences), dissonant (diametrically opposed viewpoints cause struggle), resigned (decline and death are anticipated), and closed (outward responses are impassive). Three events triggered movement from one mode to another: (1) functional changes, (2) crisis events, and (3) provider communication. Providers who understand varied family reactions can ease the patient's suffering, assist relatives in providing effective care, and prepare them for the approaching death.
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Novita, Regina Vidya Trias. "Caring Experience of Childbirth Primipara Undergone Emergency Cesarean Section: A Systematic Review." Jurnal Ilmu Keperawatan Maternitas 2, no. 1 (May 28, 2019): 25. http://dx.doi.org/10.32584/jikm.v2i1.285.
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Introduction: Childbirth is natural phenomenon. The statement ‘fear of death’ and ‘losing the child’ is manifest childbirth among the primipara (Nakano et al, 2012). Childbirth among the primipara manifest by ‘fear of death’ and ‘losing the child’. Even the mother was happy met her baby, but negative feelings, such as fear, guilt, or anger could lead their memories of the birth (Ryding, 1998). The problems during childbirth process can be affected both of the mother’s health and baby in the future. Even birth by EmCS, women could be helped to have more positive chilbirth experiences (Ayers et al., 2006), by created positive athmosphere in maternity ward. There is need to explore caring experience among of primiparaous undergone EmCS, so health care professional understand how to empowerment mothers in the emergency situation.Objectives : To conduct a systemetic review of the literatur to explore caring experience of primipara childbirth with emergency cesarean section, to understand the factors internal contributing of caring and the factors hindering or enhancing by health care professional. Methods: A systematic review was performed to explore experience primipara and identify the strategies which measure health care professional delivered care before, during and after emergency emegergency cesarean section (EmCS). The search strategy included database ProQuest and grey literature using Google scholar. Caring experience of childbirth among the primipara were evaluate with explore their experience, expactation and contributing factors which influence physical and psychological the primiparaous mothers who get EmCS. Results : Seven qualitative and four quantitative studies were found. This systemtic shows same experiences primiparous mother EmCS in qualitative studies, the dominant feeling is ”fear”. The other expereinces are pain in high intensity, have negative expereince, losing the child, lose of control, disappointed, feelings of failure and alienation for their infant, and difficulties to breastfeed esspecialy in holding and childcare the baby when already at home.The results from qualitative studies are supported by quantitative studies showed mothers with EmCS significant fear of delivery and have a more negative experience of childbirth (P< 0.001) and 80% more higher negative experience. Care before, during and after should be guided by foundation that mothers are the central of chilbirth actions, that grant their have autonomy and empowerment in this situation. Conclusion: This systematic review identified the primiparous mothers’ experience EmCS.“Fear” is the dominant felling for mothers’ EmCS, mothers needed social support and caring very approprietly in this situation esspecially in maternity ward. Caring for mothers as nurses being fully present in this moment, avoid lack of the communication and give a control to get comfortable and feeling treated with respect and as an individual, mothers’ experience more positively.The suggest for this study is to development instrument include before, during and after delivery with caring, control and communication both for mothers and nurses.
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Vähäkangas, Auli, Suvi-Maria Saarelainen, and Jonna Ojalammi. "The Search for Meaning in Life Through Continuing and/or Transforming the Bond to a Deceased Spouse in Late Life." Pastoral Psychology 71, no. 1 (October 9, 2021): 43–59. http://dx.doi.org/10.1007/s11089-021-00979-w.
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AbstractBereavement is an ongoing process of negotiation and meaning-making in which widows and widowers make sense of the changed nature of their relationship with their deceased spouse. We analyzed the experiences of meaning in life among older widows and widowers (aged 65+) using interpretative phenomenological analysis (IPA; see Smith et al. in Interpretative phenomenological analysis: Theory, method and research, Sage, 2009), with the following question: How do widows and widowers search for meaning through continuing and/or transforming their bond to their deceased spouse? The results demonstrate that some of the widowed persons sought meaning through rituals or various means of after-death communication with their deceased spouses. Other participants transformed the bond, for example, through clearing out their deceased spouse’s belongings or a process of reconciliation. Many continued and transformed the bond simultaneously, which shows that negotiation of the relationship after the death of a spouse is an ongoing process in which both continuity and change are present. The experience of a violation of meaning in life affected the participants’ capacity to continue their bond with their deceased spouse.
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Anderson, Natalie, Julia Slark, and Merryn Gott. "Unsuccessful, Unwanted, and Unwarranted Resuscitation: Exploring Ambulance Personnel Preparation and Support for Death in the Field." Prehospital and Disaster Medicine 34, s1 (May 2019): s54—s55. http://dx.doi.org/10.1017/s1049023x19001262.
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Introduction:In many countries, ambulance personnel are authorized to start or stop resuscitation efforts in accordance with clinical guidelines. Research shows that decisions to withhold or terminate resuscitation and manage patient death scenes can be particularly challenging.Aim:To identify preparation and support mechanisms for ambulance personnel who are authorized to withhold or terminate resuscitation efforts, and manage patient death in the field.Methods: A scoping review provided an overview of international research in this area. A qualitative exploratory study was then undertaken. Focus groups were held with senior ambulance personnel currently working in clinical education, managerial, or pastoral support roles across New Zealand.Results:Well-supported clinical experiential learning and resolved personal experiences with grief and death were considered most useful to increase self-efficacy and coping with patient death. Participants felt some of the personal and interpersonal skills needed to manage death in the field were difficult to teach. Relatively little time is spent preparing ambulance personnel for the non-technical skills associated with resuscitation decision-making, particularly communicating with family and bystanders. Ambulance personnel responses and support-needs during or after the event are idiosyncratic. Ambulance personnel appear to primarily rely on colleagues and managers checking in and offering informal debriefing.Discussion:Results from this study identify opportunities for improvement in the preparation and support of ambulance personnel faced with managing patient death in the field. Clinical experience with supportive mentoring may provide the best opportunities for learning, but novices may not get exposure to patient death in this context. Ambulance personnel may benefit from training, which includes opportunities to role-play death notification and communication with family and bystanders at the scene of a patient death. Ambulance employers should allow downtime to facilitate personalized peer and managerial support where needed.
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Umaretiya, Puja J., Arielle Spellun, and Angela Marie Feraco. "Describing the pediatric resident experience in caring for dying patients." Journal of Clinical Oncology 37, no. 31_suppl (November 1, 2019): 51. http://dx.doi.org/10.1200/jco.2019.37.31_suppl.51.
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51 Background: Cancer remains the leading cause of childhood death beyond infancy. Though growing subspecialty palliative care provides expertise in caring for dying children, all pediatricians encounter dying patients and should feel adequately prepared to participate in their care. Clinicians who feel insufficiently trained in communication or end-of-life care are more likely to distance themselves from seriously ill patients and report higher levels of distress and burnout. Pediatric residents are often responsible for the frontline care of dying children in the hospital and yet, most pediatric residencies lack a formal end-of-life curriculum. Here, we aim to understand the experience of pediatric residents caring for dying patients. Methods: A thirty-four item survey instrument was administered to residents in a large pediatric residency program at a tertiary care center at Rising Junior Orientation and Rising Senior Orientation in spring 2018. All residents present completed the survey. Results: Seventy-six residents completed surveys including 46 rising juniors and 30 rising seniors. Only 19 residents (25%) reported receiving any training in caring for dying children; most of which was by noon/morning conferences or informal teaching. Nearly all (70/74; 95%) residents felt that their training in caring for dying children was not sufficient. A majority of residents reported minimal to no comfort with discussion of goals of care (73%) or resuscitation status (69%), managing pain (76%), anxiety (79%), and dyspnea (80%) at the end-of-life, performing a death exam (81%), and reaching out to families after the death of a child (85%). A majority of residents anticipate continuing to care for dying children after residency (50/76; 66%). Conclusions: Pediatric residents are uncomfortable with caring for dying patients and receive minimal training, suggesting that end-of-life care is a large gap in the pediatric residency training experience.
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Morris, Sue Ellen, and Susan Block. "Lessons from bereaved families: Insights about how the care of patients impacts bereavement." Journal of Clinical Oncology 35, no. 31_suppl (November 1, 2017): 87. http://dx.doi.org/10.1200/jco.2017.35.31_suppl.87.
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87 Background: Feedback from bereaved families, including surveys of family members’ experiences during the patient’s illness and final days, can provide important insights into ways to improve the care of patients with advanced illness and their families. Methods: A convenience sample of 140 bereaved family members from Dana-Farber Cancer Institute (DFCI) completed a survey developed by the authors about their bereavement experiences. Families were asked to describe ways in which the clinical team was helpful in dealing with their loss; what they wished the clinical team had done prior to the death that would have helped in dealing with their loss; and actions taken by the team that were unhelpful or difficult for them in dealing with their loss. The Institutional Review Board at DFCI approved the study. Results: 67% of participants were female and 81% had lost a spouse or partner. The most common responses about ways in which the team was helpful in dealing with their loss included: showing compassion, sending condolence letters or making calls, and offering honest facts and information. Prior to the death of the patient, the most common response about what they wish the team had done was providing more realistic information about prognosis. When asked about actions that were unhelpful or difficult, only 24 responses were given with 50% of participants omitting this question and the remaining stating that there was nothing that the team did that was unhelpful. Of the 24 responses, the most common concerned a lack of contact or contact that was impersonal after the death. Conclusions: This survey demonstrated that families could provide input about ways clinicians can have a positive impact on the bereavement experience of families in caring for the patient before death. Compassion, accurate information, especially about prognosis, and contact with the clinician during early bereavement were highly valued by respondents. The most common unhelpful behavior identified was lack of personal contact following the death of the patient. Improved communication by the clinician, both before and after the patient’s death, has potential to improve the bereavement experience of family members.
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De Leo, Diego, Annalisa Guarino, Benedetta Congregalli, Josephine Zammarrelli, Anna Valle, Stefano Paoloni, and Sabrina Cipolletta. "Receiving Notification of Unexpected and Violent Death: A Qualitative Study of Italian Survivors." International Journal of Environmental Research and Public Health 19, no. 17 (August 28, 2022): 10709. http://dx.doi.org/10.3390/ijerph191710709.
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(1) Background: The loss of a significant person can be especially traumatic when death comes without warning and is due to causes such as suicide, murder and accidents. The way an individual is informed about the loss can affect the way of adapting to the loss and the quality of life of survivors. Communication modalities of the notifier may deeply influence the bereavement process. Aim: The present investigation aimed to explore the experience of those who received communication of such a type of death by a professional figure. (2) Method: Snowball sampling was used to recruit the participants to this qualitative study. Social networks, word of mouth and researchers’ acquaintances were used, including clients of the NGO De Leo Fund. A total of 52 Italian people (eight males and forty four females, mean age = 49.44; SD = 14.23) who received notification of the death of a loved one by police officers or by health professionals participated in the study. Deaths involved cases of suicide, murder, road accident and mountain accident. (3) Results: The following four key themes were identified: (a) how the communication took place; (b) reactions; (c) support; and (d) coping strategies. Only 22 participants reported having received clear information about the dynamics of what happened; the rest of the sample obtained only poor or ambiguous information. The majority of participants sought or received informal support from family and friends immediately after notification; however, some participants experienced a total lack of support. The opportunity to see the body of the loved one for the last farewell, when denied, caused discomfort in recipients of the news. (4) Conclusions: Even the impactful notification of a traumatic death such as suicide or road accident can be mitigated by the appropriate behaviour and attitude of notifiers, who should always avoid providing generic or ambiguous information about what happened. The notification process should not end with the simple transmission of the communication, but should also look at the following phases by including referral to supportive networks or bereavement services, aimed at assisting individuals in the immediate aftermath but also in the long term.
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Sweeney, Rory, Ben McNaughten, Andrew Thompson, Lesley Storey, Paul Murphy, and Thomas Bourke. "ACTup: advanced communication training simulation enhanced by actors trained in the Stanislavski system." BMJ Simulation and Technology Enhanced Learning 7, no. 1 (May 10, 2020): 35–37. http://dx.doi.org/10.1136/bmjstel-2019-000553.
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Strong communication, empathy and interpersonal skills are crucial to good clinical practice. Actors trained in interpretations of the Stanislavski system draw on their own life experience to develop the character. We hypothesised that simulation enhanced by trained actors would be an ideal way for our senior trainees to develop advanced communication skills. We developed a communication training course based on challenging situations which occur in paediatrics like child death and safeguarding. Actors were briefed and invited to develop characters that would behave and respond as a parent/carer might do in complex and stressful clinical scenario. Paediatric trainees then participated in simulations, with a focus on communication skills. Feedback and debrief were provided by a multidisciplinary faculty. The impact of the course was evaluated by analysis of data collected in focus groups held after the simulation. Trainees noted the actor’s ability to respond in vivo to emotive situations and felt it was much more effective than their previous experience of simulation with simulated patients without formal training. Actors were able to offer feedback on aspects of body language, tone and use of language from a non-medical perspective. Actors enhanced the realism of the simulations by changing their language and emotional performance in response to the trainee’s performance, improving trainee engagement.
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Bloomer, Melissa J., and Catherine Walshe. "Smiles behind the masks: A systematic review and narrative synthesis exploring how family members of seriously ill or dying patients are supported during infectious disease outbreaks." Palliative Medicine 35, no. 8 (August 18, 2021): 1452–67. http://dx.doi.org/10.1177/02692163211029515.
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Background: Infection control measures during infectious disease outbreaks can have significant impacts on seriously ill and dying patients, their family, the patient-family connection, coping, grief and bereavement. Aim: To explore how family members of patients who are seriously ill or who die during infectious disease outbreaks are supported and cared for during serious illness, before and after patient death and the factors that influence family presence around the time of death. Design: Systematic review and narrative synthesis. Data sources: CINAHL, Medline, APA PsycInfo and Embase were searched from inception to June 2020. Forward and backward searching of included papers were also undertaken. Records were independently assessed against inclusion criteria. Included papers were assessed for quality, but none were excluded. Findings: Key findings from 14 papers include the importance of communication and information sharing, as well as new ways of using virtual communication. Restrictive visiting practices were understood, but the impact of these restrictions on family experience cannot be underestimated, causing distress and suffering. Consistent advice and information were critical, such as explaining personal protective equipment, which family found constraining and staff experienced as affecting interpersonal communication. Cultural expectations of family caregiving were challenged during infectious disease outbreaks. Conclusion: Learning from previous infectious disease outbreaks about how family are supported can be translated to the current COVID-19 pandemic and future infectious disease outbreaks. Consistent, culturally sensitive and tailored plans should be clearly communicated to family members, including when any restrictions may be amended or additional supports provided when someone is dying.
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Abolghasemi, Hassan, Mohammad H. Radfar, Morteza Tabatabaee, Nasim S. Hosseini-Divkolayee, and Frederick M. Burkle. "Revisiting Blood Transfusion Preparedness: Experience from the Bam Earthquake Response." Prehospital and Disaster Medicine 23, no. 5 (October 2008): 391–94. http://dx.doi.org/10.1017/s1049023x00006117.
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AbstractBlood transfusion plays a critical role in the provision of medical care for disasters due to man-made and natural hazards. Although the short-term increase in blood donations following national disasters is well-documented, some aspects of blood transfusion during disasters remain under study. The 2003 earthquake in Bam, Iran resulted in the death of >29,000 people and injured 23,000. In total, 108,985 blood units were donated, but only 21,347 units (23%) actually were distributed to hospitals around the country. Kerman Province, the site of the disaster, received 1,231 (1.3%) of the donated units in the first four days after the disaster.The Bam experience revealed crucial missteps in the development of a post-event strategy for blood product management, and led to the development of a detailed disaster preparedness and response plan that addresses issues of donation, distribution, communication, transportation, and coordination. The current plan requires the Iranian Blood Transfusion Organization to convene a disaster task force immediately as the main coordinator of all disaster preparedness and response activities.
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Oosterman, Allison. "Malcolm Ross and the Samoan ‘troubles’ of 1899." Pacific Journalism Review : Te Koakoa 14, no. 2 (September 1, 2008): 163–82. http://dx.doi.org/10.24135/pjr.v14i2.950.
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New Zealand journalist Malcolm Ross was a witness to the international rivalries over Samoa between Germany, Britain and the United States, which came to a head in 1899. Civil war had broken out after the death of King Malietoa Laupepa in August 1898 over who would be his successor. The United States and Britain stepped in and supported Laupepa’s son while Germany supported a rival claimant, Mataafa. Malcolm Ross went to Samoa in late January to report on the ‘troubles’ for three New Zealand daily newspapers, the Otago Daily Times, The Press and the Evening Post. The Samoan trip was Ross’s first experience as a war correspondent, although not everybody saw the conflict as war. This article examines Ross’s coverage of four months of the conflict until the cessation of hostilities when a three-man commission was established to look into the troubles and offer a solution. The article will assess Ross’s work as a journalist in a ‘war zone’. The freedom with which he was able to operate in Samoa was not to be repeated, especially once he had become the country’s official war correspondent during World War I.
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Behrens, Brett C., and Matthew R. Sanders. "Prevention of Marital Distress: Current Issues in Programming and Research." Behaviour Change 11, no. 2 (June 1994): 82–93. http://dx.doi.org/10.1017/s0813483900004599.
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Marital dissatisfaction is the most common presenting problem in adults seeking psychological services and is rated as the second most severe stress adults can experience after a death in the family. Almost every married couple is, at some time, at risk for marital distress, conflict, separation, and divorce and for the resulting stress on themselves and their children. Traditionally, theory and practice have focused on tertiary prevention of marital distress (i.e., marital therapies). However, marital therapy has limited efficacy and accesses only limited numbers of couples. Poor communication and dissatisfaction with interactions, assessed premaritally, are strong predictors of marital distress. Several marital distress prevention programs have been developed which generally or specifically target communication behaviour of pre- and early married couples. Outcome evaluations suggest such programs can lead to improved communication and problem-solving skills, improved relationship satisfaction, lower levels of marital violence, and diminished probability of marital dissolution. Suggestions for future research include a more fine-grained analysis of situation-specific cognition, affect, and psychophysiological responses during communication, incorporation of a self-regulatory model within prevention work, and the use of longitudinal research designs.
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Pascual-Ramos, Virginia, Irazú Contreras-Yáñez, Cesar Alejandro Arce Salinas, Miguel Angel Saavedra Salinas, Mónica Vázquez del Mercado Del Mercado, Judith López Zepeda, Sandra Muñoz López, et al. "Evaluation of medical ethics competencies in rheumatology: local experience during national accreditation process." Journal of Medical Ethics 45, no. 12 (October 11, 2019): 839–42. http://dx.doi.org/10.1136/medethics-2019-105717.
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IntroductionRheumatologists are the primary healthcare professionals responsible for patients with rheumatic diseases and should acquire medical ethical competencies, such as the informed consent process (ICP). The objective clinical structured examination is a valuable tool for assessing clinical competencies. We report the performance of 90 rheumatologist trainees participating in a station designed to evaluate the ICP during the 2018 and 2019 national accreditations.MethodsThe station was validated and represented a medical encounter in which the rheumatologist informed a patient with systemic lupus erythematosus with clinically active nephritis about renal biopsy. A trained patient–actor and an evaluator were instructed to assess ICP skills (with a focus on kidney biopsy benefits, how the biopsy is done and potential complications) in obtaining formal informed consent, delivering bad news and overall communication with patients. The evaluator used a tailored checklist and form.ResultsCandidate performance varied with ICP content and was superior for potential benefit information (achieved by 98.9% of the candidates) but significantly reduced for potential complications (37.8%) and biopsy description (42.2%). Only 17.8% of the candidates mentioned the legal perspective of ICP. Death (as a potential complication) was omitted by the majority of the candidates (93.3%); after the patient–actor challenged candidates, only 57.1% of them gave a clear and positive answer. Evaluators frequently rated candidate communications skills as superior (≥80%), but ≥1 negative aspect was identified in 69% of the candidates.ConclusionsEthical competencies are mandatory for professional rheumatologists. It seems necessary to include an ethics competency framework in the curriculum throughout the rheumatology residency.
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Pooler, Charlotte, Janice Richman-Eisenstat, and Meena Kalluri. "Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers’ experiences." Palliative Medicine 32, no. 9 (July 30, 2018): 1455–64. http://dx.doi.org/10.1177/0269216318789025.
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Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients’ goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients’ symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.
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Al-haddad, Muhammad, Ibrahim M. Alananzeh, Heidi Green, Albara Alomari, and Ritin Fernandez. "Sexual experiences of cancer survivors: A qualitative study in Jordan." PLOS ONE 17, no. 8 (August 31, 2022): e0271264. http://dx.doi.org/10.1371/journal.pone.0271264.
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Background In Jordan, cancer is the second leading cause of death after cardiac disease. The impact of cancer on sexual relationships is a taboo subject and hence, such issues are underreported research among Jordanian people examining unmet needs. Aim To examine the experiences and preferences of Jordanian cancer survivors related to communication regarding their sexual needs. Methods Qualitative study conducted between May and June 2020 using semi-structured face-to-face interviews using the snow-balling approach for recruitment. Participants were recruited until data saturation was obtained and data were analyzed using qualitative thematic analysis. Results Analysis of participants’ interview data identified three main categories: 1) The psychological impact of cancer of sexual relationships; 2) Physician support; 3) Variations in sexual life and sexual experiences. Conclusion The study revealed that there is a substantial psychological impact of cancer on sexual relationships among Arab Jordanian cancer survivors. Feeling powerless, being labelled as ‘sexually disabled’, and lack of communication with physicians were emphasized by participants as a barrier to discuss sexual needs with their physicians. Lack of physicians support negatively impact Jordanian cancer survivors sexual experience and led to increased their sense of powerlessness and loss of control over sexual relationships. Implications for practice Overall, the study indicated a crucial need for physicians to encourage patients to disclose their sexual experience to help them maintain their sexual and mental health while in the fight against cancer. The physicians, nurses and allied health professionals should be engaged in the conversation with patients by taking an active role in the discussion. Additionally, the family and partners of the patients should also be approached and engaged by health professionals in the discussion to address their needs or sexual issues.
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VESA, COSMIN MIHAI, EMILIA SEVERIN, MARIUS BEMBEA, AMORIN REMUS POPA, ALINA SKLERNIACOF, CLAUDIA JURCA, KINGA KOZMA, et al. "Congenital diaphragmatic hernia: a retrospective study regarding the clinical experience of Bihor County Genetics Center." Romanian Biotechnological Letters 26, no. 3 (April 11, 2021): 2671–78. http://dx.doi.org/10.25083/rbl/26.3/2671-2678.
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Congenital diaphragmatic hernia is an abnormality of embryologic development characterized by the persistence of communication between the thoracic and abdominal cavities, followed by an extremely high death rate despite medical progress. In Bihor county, according to a retrospective analysis of patient records from the Regional Center of Genetics, 30 children were diagnosed with congenital diaphragmatic hernia over a span of 28 years, from 1990 to 2018, most being male (73.3%). Predominant were the complex congenital diaphragmatic cases, meaning the cases of diaphragmatic hernia associated with other congenital abnormalities, 67% (20 patients) presenting at least one other congenital malformation. 95% (19 cases) of patients with complex congenital diaphragmatic hernia presented pulmonary abnormalities, the most frequent being pulmonary hypoplasia; 35% (7 cases) presented cardiac abnormalities. The Apgar score at 5 minutes after birth was significantly lower for patients with the clinical form of complex congenital diaphragmatic hernia. The mortality for the patients presenting the complex form was 100%, and for the patients presenting the isolated form was 20%. Karyotype analysis was performed for 17 patients, and 23.53% of them (4 patients) presented chromosomal abnormalities.
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Sulistini, Rumentalia, Musonathul Khasifah, and Hanna DL Damanik. "Kekuatan Genggaman Tangan pada Pasien Post Stroke." Jurnal Surya Medika 6, no. 2 (February 15, 2021): 1–4. http://dx.doi.org/10.33084/jsm.v6i2.1533.
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Stroke is a loss of brain function caused by the cessation of blood supply in part of the brain. Death of brain tissue due to stroke can cause muscle weakness in the affected limb such as fingers. This condition affects the ability to move and the quality of life of patients. Patients not only experience paralysis but also experience cognitive impairment, communication disorders, and visual field disorders or deficits in perception. Aims this study was to describe handgrip strength The average age of respondents was 60.5 years with the youngest age 41 years and 80 years of age. The average strength of the handgrip is 7.4 kg with the lowest strength is 1.3 kg and the highest is 18.6 kg. Obtained a relationship between age and muscle strength after stroke (p 0.023). The relationship between age and post-stroke muscle strength shows that the relationship between medium strength and negative patterning means that as you age, muscle strength decreases. So it is necessary to develop the Pattern of Activities and exercises for Post Stroke in Hospitals and the Community.
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Hedstrom, Anna B., Esther M. Choo, Keshet Ronen, Brenda Wandika, Wenwen Jiang, Lusi Osborn, Maneesh Batra, et al. "Risk factors for stillbirth and neonatal mortality among participants in Mobile WACh NEO pilot, a two-way SMS communication program in Kenya." PLOS Global Public Health 2, no. 7 (July 21, 2022): e0000812. http://dx.doi.org/10.1371/journal.pgph.0000812.
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Globally, 2.5 million neonates die and 2 million more are stillborn each year; the vast majority occur where access to life-saving care is limited. High quality, feasible interventions are needed to reach, educate and empower pregnant women and new mothers to improve care-seeking behaviors. Mobile WACh (Mobile solutions for Women’s and Children’s health) NEO is a human-computer hybrid mobile health (mHealth) system that allows for two-way short message service (SMS) communication between women and healthcare workers during the peripartum period. We performed a secondary prospective cohort analysis of data from the Mobile WACh NEO pilot study to determine maternal characteristics associated with neonatal death and stillbirth and examine participant messaging associated with these events. Pregnant women were enrolled at two Kenyan public health clinics between 28–36 weeks gestation. They received personalized, educational, action-oriented SMS messages during pregnancy and through 14 weeks postpartum. Participants could message the study at any time and study nurses responded. Standardized questionnaires assessed participant characteristics at baseline and 14 weeks postpartum. Outcomes were ascertained at study visits or by SMS report. Among 798 pregnant women enrolled, median age was 24 years [IQR 21, 29], 37% were primiparous and 92% used SMS as a primary mode of communication. Seventeen neonatal deaths and 13 stillbirths occurred. Older maternal age was associated with increased risk of stillbirth [aRR 1.12 (CI 1.02–1.24), p <0.05]. We found no significant predictors of neonatal death. Participant messaging to study nurse about concerns in the week preceding death was less common prior to infant death after discharge home from facility birth (9%) than prior to stillbirth (23%). We found limited predictors of neonatal death and stillbirth, suggesting identifying women prenatally for targeted support may not be a feasible strategy. Scarce messaging from mothers whose neonates died may reflect difficulties identifying illness or rapid deterioration and needs to be better understood to design and test interventions for this high-risk period. Messaging prior to stillbirth, while at similar levels as other periods, does not appear to have an impact as most women do not experience identifiable signs or symptoms prior to the event.
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Berry, Philip, Sreelakshmi Kotha, Giovanni Tritto, and Sabina DeMartino. "A three-tiered approach to investigating patient safety incidents in endoscopy: 4-year experience in a teaching hospital." Endoscopy International Open 09, no. 08 (July 16, 2021): E1188—E1195. http://dx.doi.org/10.1055/a-1479-2556.
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Abstract Background and study aims Patient safety incidents (PSIs) in endoscopy, although infrequent, can lead to significant morbidity or mortality. There is no commonly agreed strategy to investigate PSIs. We describe a three-tiered approach to investigation to facilitate appropriate action, shared learning, and timely disclosure to patients as mandated in the UK health system by the Duty of Candor (DoC). Methods PSIs were identified prospectively over a 3-year, 7-month period in a large teaching hospital. Level of investigation was agreed by a group of three senior clinicians. Levels of investigation comprised: 1) rapid desktop review; 2) departmental “mini-root cause analysis” (mini-RCA, developed internally); and 3) hospital-level RCA or mortality review. Results Of 63006 procedures there were 73 reported cases of significant harm. Eleven resulted in death. Thirty PSIs were related to hepatobiliary endoscopy, 17 to lower gastrointestinal endoscopy, and 26 to upper gastrointestinal endoscopy. Hospital-level RCA was performed in six cases, mini-RCA/mortality review in 14, and 53 were examined by the endoscopy lead. Findings were presented in an endoscopy user group (EUG) meeting. There was learning in relation to informed consent, pre-procedural radiology reviews, pre-procedural treatment, escalation planning, teamwork and communication, preparation of equipment, and recognition of delayed complications. Open and honest communication with patients and relatives was facilitated. Conclusions The introduction of an endoscopy-tailored investigation tool, the mini-RCA, as part of a three-tiered approach, facilitated investigation, appropriate action, learning, and disclosure after PSIs.
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Wong, Eliza Lai-Yi, Janice Ying-Chui Lau, Patsy Yuen-Kwan Chau, Roger Yat-Nork Chung, Samuel Yeung-Shan Wong, Jean Woo, and Eng-Kiong Yeoh. "Caregivers’ Experience of End-of-Life Stage Elderly Patients: Longitudinal Qualitative Interview." International Journal of Environmental Research and Public Health 19, no. 4 (February 13, 2022): 2101. http://dx.doi.org/10.3390/ijerph19042101.
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Objectives: This study seeks to provide an understanding of the changing experiences in caregivers of end-of-life patients in Hong Kong through exploring their caregiving journey. Methods: Using longitudinal individual qualitative interviews, a total of 14 caregivers of community-dwelling elderly patients receiving end-of-life care were recruited between 2015 and 2016. A series of in-depth interviews and observations were conducted in 14 cases during the end-of-life journey. Results: A thematic analysis revealed four sequential experiential stages, abbreviated as “CAPE” that caregivers confronted: Stage 1 Certainty, (1a) lack of certainty regarding the progression of decline at the end-stage of life (1b) feelings of despair as patients’ function decreased; Stage 2 Ambivalence, (2a) feelings of ambivalence after decisions were made regarding EOL care, (2b) struggle over care responsibility within families; Stage 3 Perturbed, (3a) varied in quality of EOL care, (3b) depressed mood arisen from frequent exposure to the suffering of elderly patients; and Stage 4 Expectation, (4a) losing the caregiving role as patients showing signs of imminent death. Conclusions: These findings increase our understanding of caregivers’ in-depth experience over time that arise within the structural context of end-of-life care. Our data highlights the need for end of life related knowledge and information, provision of a caring atmosphere and communication, and professional-led detachment in creating caregiving-friendly service in healthcare system, thus as to provide support and alleviate stress for caregivers with their critical responsibility and role during the course of end-of-life care.
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Shayganmehr, Aref, Fatemeh Hazratian, and Robabeh Emrouzi. "Lived Experience of Transportation Network Company Driver About the Causes of High-risk Driving Behaviors: A Thematic Analysis." Health in Emergencies & Disasters Quarterly 6, no. 3 (April 1, 2021): 169–78. http://dx.doi.org/10.32598/hdq.6.3.391.1.
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Background: Nowadays, industrialization, using cars and consequently traffic jams are part of human life which grows every day. Along with the expansion of communication and transportation speed, the number and severity of traffic accidents increases. According to the World Health Organization, traffic accidents are now recognized as the ninth cause of death worldwide. In Iran, traffic accidents after cardiovascular diseases are the second leading cause of death. Materials and Methods: This qualitative study was designed and implemented to determine driver’s views and opinions in two cities of Warsaw, Poland, and Tabriz, Iran, about driver’s high-risk behaviors. This study was conducted using in-depth interviews with 27 drivers. The study results were divided into four main questions about driving behaviors, reasons for driving abnormal behaviors, the prevalence and causes of abnormal behaviors, and suggested measures to correct these behaviors. Results: The study results were divided into six main themes of driving norms, individual factors, social factors, external factors, driving skills, and driving laws. Our findings indicate that drivers are more likely to rely on individual skills in driving in unacceptable conditions. In other words, they ignore the rules and regulations. But, when driving in high standards conditions and good facilities, drivers accept the rules and prioritize them. Conclusion: Internal control should be considered a helpful complement to external control, and that external control provides the highest efficiency when it comes with internal control. To internalize norms and observe driving laws and regulations, the authors suggest removing obstacles such as distrust among drivers regarding the effectiveness of driving laws, unawareness of breaking the laws, lack of job satisfaction, low level of participation, and structural barriers. Also, roads and vehicle safety must be improved along with a better track of the drivers’ behavior.
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Beaumont, C. Ellsworth, and C. Benjamin. "Identifying Gaps in Metastatic Breast Cancer Patient Knowledge and Their Communication Experiences With Health Care Professionals and Developing Visually Based Solutions to Overcome Those Gaps." Journal of Global Oncology 4, Supplement 2 (October 1, 2018): 108s. http://dx.doi.org/10.1200/jgo.18.66400.
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Background: Metastatic breast cancer (MBC) is the fifth most common cause of death from cancer globally.1 MBC is incurable and its trajectory complicated. Patients have only a few days to choose treatments after an unexpected diagnosis, and most conversations with health care professionals (HCPs) are oral, a communication method with low retention accuracy (14%).2 Patients and caregivers feel ill prepared and overwhelmed. Yet when visuals are introduced into HCP/patient communication, accurate recall can be as high as 85% for low-literacy populations.2 Aim: Test if visually based communication tools can be used by HCPs to increase MBC patient and caregiver understanding of MBC as incurable, and confidence in making treatment decisions for quality of life. Methods: Survey of MBC patients (n=487) communication experience prior to treatment of Stage IV; interviews with HCPs (n=20) in the clinic to identify communication barriers with patients; empathy role play with HCPs and patients to clarify viewpoints (n=7); analysis of patient materials; in-depth interviews with MBC patients and communication experts (n=12); iterative design process of communication tool prototype with MBC patient group (n=48) and HCPs. Results: Only 1 in 8 patients were educated with visuals during initial discussions with HCPs. Less than half of patients (46%) included HER2 and hormone receptor status when asked to describe their subtype. One-third of patients felt they did not have enough knowledge to participate in decision-making for treatment and 58% of patients felt rushed to start; 71% did not recall discussing goals/hobbies; and just 62% discussed pain and symptom management. HCPs want to deliver difficult news in a clear and empathetic way, reduce repetition, save time educating patients, and have better tools for caregivers; current patient materials are impersonal and overwhelming. Iterative development and testing of the MBC Communication Toolkit prototype with HCPs and patients showed patients understood treatment options more easily with a visual metaphor while HCPs using the prototype said the images were effective for communicating symptoms and treatment options. Conclusion: A visual approach to improving communication between MBC patients and caregivers and their HCPs seems possible based on positive results of patient interpretation and practitioner feedback. Visual tools can help HCPs engage patients with information to enable them to understand their disease, goals, and nature of treatments so they can make informed, appropriate decisions. REFERENCES 1. International Agency for Research on Cancer: Breast cancer: estimated incidence, mortality and prevalence worldwide in 2012. Available at https://globocan.iarc.fr/Pages/fact-sheets_cancer.aspx 2. Houts PS, Witmer JT, Egeth HE, et al: Using pictographs to enhance recall of spoken medical instructions II. Patient Educ Couns 43:231-242, 2001 https://doi.org/10.1016/S0738-3991(00)00171-3
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Clark, Jelisa S. "Breonna’s Song." Departures in Critical Qualitative Research 11, no. 3 (2022): 57–76. http://dx.doi.org/10.1525/dcqr.2022.11.3.57.
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After failing to indict officers involved in the shooting death of Breonna Taylor, Kentucky Attorney General Daniel Cameron explained, “My job as the special prosecutor was to put emotion aside and investigate facts.” The positivist values emphasized by Cameron (i.e., objectivity, validity, thoroughness, and truth) have consistently been referenced as the gold standard of research and been used to justify White supremacy and deny Black humanity. In this article, I use Unapologetic Black Inquiry (UBI) to analyze Cameron’s remarks. UBI values Black defiance and dissident knowledge to center Black humanity and liberation, and provokes questions such as: Who produced knowledge and narratives in the Breonna Taylor case? What was their purpose in creating this knowledge? What are the assumptions about Blackness embedded in this narrative? In answering these questions, I challenge the presumed superiority of objectivity, validity, thoroughness, and truth in knowledge production, discuss how these values deny Black humanity, and explore the liminal space and dis/comfort Black women may experience when their humanity is denied.
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Matusiak, Thomas. "A jaguar in Paris: Teo Hernández’s shamanic cinema." Studies in Spanish & Latin-American Cinemas 18, no. 3 (September 1, 2021): 341–50. http://dx.doi.org/10.1386/slac_00060_1.
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Teo Hernández (Ciudad Hidalgo 1939‐Paris 1992) began a prolific career as an experimental filmmaker after entering a self-imposed exile in Paris in 1966. With no formal training, he completed dozens of films on the amateur format of Super 8 before his untimely death at the height of the AIDS epidemic in France. Hernández’s cinema cannot be separated from his postcolonial experience as an undocumented immigrant in Europe. Based on his audio-visual and written work, this article examines how the filmmaker elaborated a unique film theory grounded in an auto-ethnographic appropriation of primitivist tropes. Through this queer exilic cinema, Hernández crafted an authorial persona around the figure of a shamanic filmmaker. I take the films Nuestra senõra de París/Our Lady of Paris (Hernández 1981‐82) and Pas de ciel/No Sky (Hernández 1987) as a point of departure to examine the construction of a cinematic ritual capable of inducing trance in the body of the spectator and the filmmaker.
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Patton, Desmond Upton, Jamie MacBeth, Sarita Schoenebeck, Katherine Shear, and Kathleen McKeown. "Accommodating Grief on Twitter: An Analysis of Expressions of Grief Among Gang Involved Youth on Twitter Using Qualitative Analysis and Natural Language Processing." Biomedical Informatics Insights 10 (January 1, 2018): 117822261876315. http://dx.doi.org/10.1177/1178222618763155.
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There is a dearth of research investigating youths’ experience of grief and mourning after the death of close friends or family. Even less research has explored the question of how youth use social media sites to engage in the grieving process. This study employs qualitative analysis and natural language processing to examine tweets that follow 2 deaths. First, we conducted a close textual read on a sample of tweets by Gakirah Barnes, a gang-involved teenaged girl in Chicago, and members of her Twitter network, over a 19-day period in 2014 during which 2 significant deaths occurred: that of Raason “Lil B” Shaw and Gakirah’s own death. We leverage the grief literature to understand the way Gakirah and her peers express thoughts, feelings, and behaviors at the time of these deaths. We also present and explain the rich and complex style of online communication among gang-involved youth, one that has been overlooked in prior research. Next, we overview the natural language processing output for expressions of loss and grief in our data set based on qualitative findings and present an error analysis on its output for grief. We conclude with a call for interdisciplinary research that analyzes online and offline behaviors to help understand physical and emotional violence and other problematic behaviors prevalent among marginalized communities.
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Mohammad, K., I. Goswami, J. Buchhalter, and L. Bello-Espinosa. "Developing a Consultation Model for Neonatal Neurocritical Care: A 2-Year Experience." Paediatrics & Child Health 21, Supplement_5 (June 1, 2016): e86b-e87. http://dx.doi.org/10.1093/pch/21.supp5.e86b.
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Abstract BACKGROUND: Developing brain has unique pattern of injury and responds to injury differently. Management of neonatal seizures, perinatal asphyxia as well as ischemic-hemorrhagic preterm brain injury requires specific skill sets of neonatology, neurology, neurophysiology and neuroradiology. The impact of neurological conditions extends beyond neonatal intensive care unit stay warranting continuity of care in order to improve outcomes. OBJECTIVES: Establishing a special interest group to run within the existing intensive care facility based on separate subspeciality model of neurocritical care in adults and study the impact of the change on short term outcome of neurological conditions in neonates. DESIGN/METHODS: A multidisciplinary team was formulated including faculties from Neonatology, Pediatric Neurology, Diagnostic Imaging and Neonatal Follow up to form a neonatal neurocritical care (NNCC) core team. Roles to each team members was defined and oncall schedule for round the clock coverage developed. Hypoxic Ischemic Encephalopathy (HIE) was targeted first by standardized policies and procedures to be followed after admission, introduction of continuous video EEG monitoring and series of training sessions for nurses and fellows on bedside application of diagnostic tools. The core team was involved in care of the infant from admission to discharge with a well defined follow up plan and had 24 hour remote access to EEG recorded in any of the 2 Level 3 NICU involved. RESULTS: On comparing management and outcomes prior to and following the start of NNCC we found that the use of anti-epileptic drugs (AED) reduced from 60 to 46%, the use of maintenance dose was halved. Considerable reduction in death or MRI documented brain injury was noted. CONCLUSION: Consultation model of NNCC resulted in improved communication and collaboration between disciplines, better HIE care pathway and short term outcomes, creation of database that will allow assessment of long term outcome. The group is currently targeting Intra-Ventricular hemorrhage and post-hemorrhagic hydrocephalus management. In future the team will focus on real time multimodal brain monitoring.
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Kaltman, Jessica, Anne Margaret Walling, and Neil Wenger. "Implementing the Bereaved Family Survey for an advanced cancer population." Journal of Clinical Oncology 35, no. 31_suppl (November 1, 2017): 76. http://dx.doi.org/10.1200/jco.2017.35.31_suppl.76.
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76 Background: Despite being endorsed as a National Quality Forum measure, the Bereaved Family Survey (BFS), a tool to assess a patient’s end-of-life (EOL) experience, has not been broadly used outside the Veteran’s Affairs Health System or in the outpatient setting. We adapted the BFS for an advanced cancer population and implemented it at an academic health system to identify areas for quality improvement in EOL care. Methods: Between August 2016 and May 2017, we surveyed caregivers of advanced cancer decedents. We included English-speaking decedents > 18 years of age who were continuity patients of a health system oncologist and had documentation of metastatic disease in either problem list, oncology notes, or advanced imaging. Death was verified in the chart or by obituary found via internet search. Caregivers surveyed were the appointed healthcare agent in an advance directive or the first listed contact. Scoring was done via the top-box approach. Surveys were mailed 3 months after death with a follow-up post-card reminder and phone-call at 2 and 4 weeks, respectively. Results: Of 285 eligible decedents, 242 caregivers were mailed surveys with 83 completed (34% response rate) of whom 28% died in the hospital. Mean overall BFS score was 75 out of 100. Ratings were high for overall care quality (78% Always/Usually) and staff caring (74% Always) with lower ratings for communication (58% Always), emotional/spiritual support (37% Always with 30% not wanting support) and pain control (56% Always/Usually uncomfortable). Nearly 84% of respondents felt their loved one died in the right place and 67% felt staff caring for the patient provided a dignified death. 74% of patients were referred to hospice with 64% of caregivers stating the hospice referral was timely. Write-in responses mentioned concerns about caregiver support, the quality and timeliness of hospice care and communication between physician and patient/caregiver. Over half of statements were positive remarks about a physician or ancillary staff member. Conclusions: A post-mortem survey implemented for an advanced cancer population received a modest response rate but collected valuable information regarding gaps in care quality to drive quality improvement.
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Butkevičienė, Rūta, Jolanta Kuznecovienė, David Harrison, Eimantas Peičius, Gvidas Urbonas, Kristina Astromskė, and Ramunė Kalėdienė. "Being Heard: A Qualitative Study of Lithuanian Health Care Professionals’ Perceptions of Dignity at the End-of-Life." Medicina 57, no. 12 (December 1, 2021): 1318. http://dx.doi.org/10.3390/medicina57121318.
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Background: The literature on professionals’ perceptions of dignity at the end-of-life (EOL) shows that there is a need for studies set in different cultural contexts. Lithuania represents one of these little-studied contexts. The aim of this study is to understand professionals’ attitudes, experiences, and suggestions concerning EOL dignity to provide knowledge upon which efforts to improve EOL care can be grounded. The research questions are “How do Lithuanian health care professionals understand the essence of dignity at the end-of-life of terminally ill patients?” and “How do they believe that dignity at the EOL can be enhanced?”. Materials and Methods: The study was exploratory and descriptive. It employed an interpretive phenomenological method to understand the essence of the phenomenon. Lightly structured interviews were conducted with professionals who had EOL experience, primarily with elderly and late middle-aged patients. from medicine, nursing, social work, and spiritual services. The interviews were primarily conducted by audiovisual means due to pandemic restrictions. Using a constant comparative method, the research team systematically codified text and developed themes by consensus after numerous analytic data iterations. Results: Four primary themes about EOL dignity were identified: Physical Comfort, Place of Care and Death, Effects of Death as a Taboo Topic, and Social Relations and Communication. A fifth, overarching theme, Being Heard, included elements of the primary themes and was identified as a key component or essence of dignity at the EOL. Conclusions: Patient dignity is both a human right and a constitutional right in Lithuania, but in many settings, it remains an aspiration rather than a reality. Being Heard is embedded in internationally recognized patient-centered models of EOL care. Hearing and acknowledging individuals who are dying is a specific skill, especially with elderly patients. Building the question “Is this patient being heard?” into practice protocols and conventions would be a step toward enhancing dignity at the EOL.
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Stanytsina, Halyna, and Igor Zagorodniuk. "The European hamster (Cricetus cricetus) in captivity: keeping and breeding experience." Theriologia Ukrainica 2021, no. 21 (July 1, 2021): 152–64. http://dx.doi.org/10.15407/tu2114.
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Hamsters have long been considered agricultural pests and their abundance has been controlled. Now in many countries they are recognized as rare and endangered species that are at a risk of extinction. Among conservation measures to preserve and restore the population of many species is to gain experience in their keeping and reproduction in captivity. The experiments were carried out with hamsters obtained from the Crimea at different times. The keeping experience of hamsters in an ordinary residential apartment and the specifics of domestication of the animals caught in the nature are described. Their captivity, cage arrangement, nutrition, reproduction, specifics of communication, seasonal and circadian rhythms, territorial behaviour, threats and factors influencing their well-being are described in detail. Practice has shown that these are friendly and interacting animals to keep at home, and their breeding as pets is promising. Even adults caught in a trap get used to people in 2–4 weeks, take food from hands, go to the cage door when they are called, remember their nickname, calmly walk on the hands and do not bite at all, even when their babies are taken to the hands. Although hamsters are nocturnal in the nature, they are often active during the day at home. They do not hibernate and are active all-year-round, and even breed in winter. Hamsters are highly sensitive to overheating and draft; both are harmful to them and lead to death. In the evenings, while walking around the room hamsters do not run away and do not hide; the cage is considered their territory, safe, and cosy. Therefore, after walks, they go to the cages themselves or ask to be placed in the cage. Quickly master the treadmill and run in it for hours. Hamsters are very different by their individual behaviour and preferences. The purpose of keeping hamsters in captivity is to introduce the species as pets and to form so-called ‘reserve populations’ to restore populations of the species in the wild. Being among the pets, this species will be preserved in the culture and will be able to be released in places where their existence would be desirable. Based on the experience gained from keeping hamsters in captivity, steps to form "wild" behaviour are recommended. The formation of artificial breeding groups, which together form a reserve population, is an important measure in restoration programmes of natural populations of Cricetus cricetus.
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Walsh, Elizabeth Paige, Catherine Riessman, and Paul Mathew. "Distress themes encoded in narratives of the “last day”: A study among surviving caregivers." Journal of Clinical Oncology 33, no. 29_suppl (October 10, 2015): 23. http://dx.doi.org/10.1200/jco.2015.33.29_suppl.23.
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23 Background: Survey studies have determined the prevalence of dissatisfaction among survivor caregivers related to end of life care. Toward improvement in care at EOL, we hypothesized that novel themes of distress would be identified in narratives of the “last day” from the recently bereaved. Methods: Extended narrative accounts of patients’ last day of life were collected from adult, English-speaking, caregivers (n=5) present at the death of a cancer patient. Interviews (45-120 minutes) featured open-ended questions prompting the subject to share an account of the last day, their care and coping experience. Interviews were conducted and transcribed by the author and analyzed thematically. Results: A theme of distressed communication with health care providers [HCP] could be identified in narrative segments in all 5 interviews, linked to transitions such as changes in treatment or clinical status. Narrative fragments exemplary of distress arising from communication are presented. I. A pain crisis so severe “she asked God to take her.” “I am ready to call the nurse practitioner…and she wouldn’t allow it... She doesn’t want to be a burden.” II. “I said, I don’t want you telling him directly anything. I want you to tell me first so we can go in together and tell him…the right way” including an option to “spend time together.” Soon after, the physician “came rushing into the room and as if we’d never had the conversation…, OK, we’re going to take you to the ICU.” III. “I had asked the nurse…to make sure that she had her clothes on when the funeral parlor came.” It was “important to me for her dignity.” The nurse responded: “they just cut the clothes off anyhow.” IV. “Now you’re going to pull chemo out of your hat? Look at him!...He doesn’t want to leave us but he’s ready to go.” “After we said no to chemo, [his doctor] never came near S again.” Conclusions: This pilot study of last day narratives obtained from surviving caregivers points toward a high prevalence of distress content relating to impaired communication with HCP with consequences including uncontrolled pain, conflict, perceived loss of dignity and abandonment. These data indicate the need for larger-scale studies focused on the content and style of bidirectional communication at the EOL.
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Yazdani, Shahram, Elana Evan, Danielle Roubinov, Paul J. Chung, and Lonnie Zeltzer. "A longitudinal method of teaching pediatric palliative care to interns: Preliminary findings regarding changes in interns' comfort level." Palliative and Supportive Care 8, no. 1 (February 18, 2010): 35–40. http://dx.doi.org/10.1017/s147895150999068x.
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AbstractObjective:A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns' self-assessed comfort levels regarding caring for children with life-threatening conditions.Methods:A newly created assessment tool was administered to interns in order to rate their comfort regarding pediatric palliative care at the beginning and conclusion of their intern year.Results:Twenty-two of the 29 interns completed this survey. Baseline data indicated 55% of the interns had some experience with taking care of a dying pediatric patient during their medical school training, and 79% indicated that they had taken care of a dying adult. Only 7% of the interns felt adequately prepared to deal with death and dying, but all interns indicated interest in further learning about pediatric palliative care. Comparison of the overall comfort levels of the 22 responding residents before and after the first year of training in 20 different related tasks demonstrated a significant self-assessed improvement of comfort in seven areas. There was no increase in self-reported comfort in communication related to palliative care.Significance of results:Residents indicated increased comfort in some areas of pediatric palliative care after the first year of their training. The underlying cause of this increased comfort is unclear at this time. The overall effect of longitudinal palliative care curriculums on residents' level of comfort in caring for this population deserves further assessment.
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GULÁŠOVÁ, Ivica, Nadežda PETERKOVÁ JUSTHOVÁ, and Jozef BABEČKA. "SOCIAL AND ECONOMIC ASPECT OF TREATMENT OF AN ONCOLOGICAL PATIENT IN SPA INSTITUTIONS." JOURNAL OF EUROPEAN ECONOMY, Vol 19, No 4 (2020) (December 2020): 711–25. http://dx.doi.org/10.35774/jee2020.04.711.
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The authors hereby discuss the social aspect of treatment of an oncological patient in a spa institution. The aim of this article is to analyse social changes and needs of an oncological patient, creating a burden to both the patient and their family. The disease is an unbalanced bio-psycho-socio-spiritual phenomenon affecting the quality of life. It is the result of interaction of pathologic and compensation processes that lead to the degeneration and damage of cells, tissues and systems of an organism. The way of coping with the disease is also influenced patients’ attitudes to the disease, their knowledge about the same and, of course, existing prejudices and distorted views that are still present among the public in relation to oncological diseases. A person lives in a certain social environment, has their own family, employment, problems, and interests. Satisfaction of social needs is aimed at moderation of social isolation, effective communication with the patient and provision of social support system. Communication is the exchange of information; it is the basic principle of interpersonal relationships in nursing healthcare. Effective communication is one of the basic and important psychosocial needs and positively influences the quality of relationship between the nurse and the patient. Communication with an oncological patient requires the nurse to have a variety of communication skills that cannot be learned, but are formed through real life situations, constant contact with the patient, knowledge of human psyche, but especially kind and open heart and love of their job. Oncological disease and the treatment thereof significantly influences physical activity, not only at home but also in employment. The patients find themselves in a new social role; can experience changes in their employment, role of a parent and/or a partner. The temporary incapacity to work has longer duration and can end with the return to the previous job position, change to a less exhausting job or a job with shorter working hours, in partial or complete disability and possibly also in death of the patient. The return to work often means the end of loneliness and increased self-awareness for the patient. Spa treatment is expected to provide restoration of organs or systems affected by the oncological disease after the termination of anti-carcinoma treatment, restore the unsatisfactory functioning of organs or systems induced secondarily by the disease or by the treatment thereof.
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Lawrence, Madelaine. "Near-Death and Other Transpersonal Experiences Occurring During Catastrophic Events." American Journal of Hospice and Palliative Medicine® 34, no. 5 (March 2, 2016): 486–92. http://dx.doi.org/10.1177/1049909116631298.
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The purpose of this article is to describe examples of near-death and other transpersonal experiences occurring during catastrophic events like floods, wars, bombings, and death camps. To date, researchers have limited their investigations of these transpersonal events to those occurring to seriously ill patients in hospitals, those dying from terminal illnesses, or to individuals experiencing a period of grief after the death of a loved one. Missing is awareness by first responders and emergency healthcare professionals about these transpersonal experiences and what to say to the individuals who have them. Some responders experience not only deaths of the victims they assist, but also deaths of their colleagues. Information about these transpersonal experiences can also be of comfort to them. The examples in this article include a near-death experience during the Vietnam War, an out-of-body experience after a bomb explosion during the Iraq War, a near-death visit to a woman imprisoned at Auschwitz, and two after-death communications, one from a person killed in Auschwitz and another from a soldier during World War I. Also included are interviews with two New York City policemen who were September 11, 2001 responders. It is hoped the information will provide knowledge of these experiences to those who care for those near death, or dying, or grieving because of catastrophic events, and encourage researchers to further investigate these experiences during disasters.
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Wynne, Deborah. "Charlotte Brontë’s Gothic Fragment: ‘The Story of Willie Ellin’." Victoriographies 11, no. 1 (March 2021): 20–37. http://dx.doi.org/10.3366/vic.2021.0407.
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Charlotte Brontë’s eighteen-page fragment, ‘The Story of Willie Ellin’, written shortly after the publication of Villette in 1853, combines the gothic and realism and uses multiple narrators to tell a disturbing story of cruelty towards a child. The generic instability and disordered temporal framework of this fragment make it unlike anything Brontë had previously written, yet it has attracted the attention of few scholars. Those who have discussed it have condemned it as a failure; the later fragment ‘Emma’, also left incomplete by the author's premature death, has been seen as the more likely beginning of a successor to Villette. ‘The Story of Willie Ellin’ reveals Brontë at her most experimental as she explores the use of different narrative voices, including that of an unnamed genderless ‘ghost’, to tell a story from different perspectives. It also shows Brontë representing a child's experience of extreme physical abuse which goes far beyond the depictions of chastisement in Jane Eyre (1847). This essay argues that ‘The Story of Willie Ellin’ affords rich insights into Brontë’s ideas and working practices in her final years, suggesting that it should be more widely acknowledged as a unique aspect of Brontë’s oeuvre, revealing the new directions she may have taken had she lived to complete another novel.
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Mukhametshina, Dinara R., and Yulia Yu Danilova. "Political Soviet posters and modern multimodal texts: cognitive experience in the process of perception and categorization of reality." Current Issues in Philology and Pedagogical Linguistics, no. 4 (December 25, 2021): 90–103. http://dx.doi.org/10.29025/2079-6021-2021-4-90-103.
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In the work, the attempt to identify the features of the interaction of signs of different semiotic systems in the context of multimodal texts, which are considered as a special information construct and are perceived through the visual communication channel, which combines verbal, graphic, iconic, color codes. The aim of the work was an attempt to make a comprehensive analysis of multimodal political texts, an important element of which is the image of the historical personality of Stalin. This analysis allows us to trace the transformation of the perception and assessment of the life activity of an ambiguous politician in the minds of Soviet and Russian people and, as a consequence, the linguistic society as a whole. The material for the study was Soviet political posters of the mid-20th century and modern multimodal texts, the total number of which was 53 and 67 examples, respectively. The set of methods systematization and generalization, continuous sampling, contextual, intertextual and comparative analysis, is due to the expediency, logic and historical retrospective of the study. This made it possible to reconstruct the cognitive past recorded in the historical consciousness of the people: the article reveals the image of Stalin, in Soviet posters and in modern political multimodal texts, the specificity of perception, categorization and attitude of Soviet / Russian society to its past and present is revealed. For example, the image of Stalin on the posters of the 1930-1953s is as idealized and metaphorical as possible, which is due to the manipulative function – the need to promote the cult of the personality: the themes of patriotism, duty and beneficence become the leading ones and are called upon to form in the mass consciousness a stable, deliberately positive idea of the bright communist future the whole country and its every single Soviet citizen. In modern multimodal texts, it can be noted that they reflect two diametrically opposed views on the personality and life of Stalin: on the one hand, a positive, idealized image of a politician, a nostalgic perception; on the other hand, there is a negative (ironic) view of the “situation of the past,” which is due to the historical context, the cult of the individual and his debunking of this cult after the death of the leader. The specificity of these types of texts is largely due to the author’s linguistic pragmatic attitude and extralinguistic factors.
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Lovrenčić, Petra, and Cecilija Rotim. "Evaluation and care of a polytraumatized patient." Croatian nursing journal 3, no. 1 (June 28, 2019): 93–102. http://dx.doi.org/10.24141/2/3/1/8.
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Polytrauma is a simultaneous severe injury to at least two body regions where at least one injury, or a combination of multiple injuries, endangers life. The spectrum of injuries and posttraumatic disorders is extremely wide. Most commonly they include shock, hypotension due to bleeding or vital organs injury. Injuries are the leading cause of death in developed countries today, and proportion of people who experience polytrauma in the total number of the injured is 3%, with a high mortality rate of 22%. Reanimation procedures and understanding of pathophysiology have progressed remarkably, and in the last twenty years, mortality has decreased by twenty percent. Time is a very valuable factor in the treatment of a polytraumatized patient and requires initiation of injury treatment within 60 minutes of its occurrence. In the clinical approach to treatment, algorithms for the treatment of polytrauma are used to achieve the best results of treatment and to reduce posttraumatic complications. Triage is a formal process through which the condition of all the patients is evaluated right after their arrival at the Emergency Department. Triage determines the urgency of the problem and assesses the allowed and expected waiting time for the beginning of the physician’s examination and treatment of the patient. The approach to a polytraumatized patient is multidisciplinary, includes many specialties and requires continuous education and highly educated staff. High-quality skills, good communication and readiness to respond quickly and efficiently are just some of the key determinants of working with patients with life-threatening conditions.
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Zhu, Shuqin, Hanfei Zhu, Xintong Zhang, Kouying Liu, Zumei Chen, Xiaowen Yang, Changxian Sun, et al. "Care needs of dying patients and their family caregivers in hospice and palliative care in mainland China: a meta-synthesis of qualitative and quantitative studies." BMJ Open 11, no. 11 (November 2021): e051717. http://dx.doi.org/10.1136/bmjopen-2021-051717.
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ObjectiveTo investigate the care needs of dying patients and their family caregivers in hospice and palliative care in mainland China.MethodsA search for English and Chinese quantitative and qualitative studies was performed using the following English databases: PubMed (Medline), CINAHL and PsycINFO, as well as Chinese databases: SinoMed and CNKI. The records were independently screened by two reviewers and critiqued using Joanna Briggs Institute Critical Appraisal tools. All quantitative data were transformed into qualitative data, which were converted into textual descriptions. Due to the diversity of included studies, a three-step analysis was performed: narrative summary, thematic analysis and presentation of integrated results in a narrative form. The qualitative findings were pooled using the meta-aggregation approach.ResultsThe literature search identified 2964 papers after removing duplicates, from which 18 were included (9 quantitative and 9 qualitative studies). All studies were conducted in mainland China. Quantitative studies involved cross-sectional surveys, and qualitative studies involved interviews for data collection. Two synthesised results of patients’ needs were identified, including needs to be comfortable and experience a good death. Another two synthesised results of family caregivers’ needs included needs to care for and improve the quality of life of patients, and to care for themselves well.ConclusionThis study identified that patients and family caregivers have an increasing demand for professional care at the end of life. Professionals, especially nurses, should enact a patients’ demand-centred practice to overcome the challenges of organisation, education, emotion and communication to provide high-quality end-of-life care.
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Lage, Daniel E., Patrick Connor Johnson, Shira Hornstein, Isabel Neckermann, Alane Schmelkin, Connor Grayzel, Patricia Brown, et al. "Supportive oncology care at home after discharge for patients with advanced cancer." Journal of Clinical Oncology 40, no. 28_suppl (October 1, 2022): 295. http://dx.doi.org/10.1200/jco.2022.40.28_suppl.295.
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295 Background: Patients with advanced cancer often experience frequent and prolonged hospitalizations, and the transition from hospital to home represents a critical period for these individuals, as they prefer to maximize time at home and avoid readmissions. We sought to demonstrate the feasibility and acceptability of a Supportive Oncology Care at Home intervention to address the post-discharge needs of recently hospitalized patients with advanced cancer. Methods: We conducted a single-arm pilot trial at Massachusetts General Hospital (MGH). We enrolled English-speaking adults with advanced solid tumors experiencing their second or later unplanned hospitalization, who were being discharged home without hospice services and residing within a 50 mile radius of MGH. The three-week intervention consisted of: 1) hospital in the home care model for proactive symptom assessment and management, including clinician visits to assess patients, draw labs, administer intravenous medications and hydration, and ensure optimal symptom management; 2) remote monitoring of daily patient-reported symptoms, vital signs, and body weight; and 3) structured communication with the oncology team. The primary endpoint of the study was feasibility, defined as ≥60% of approached and eligible patients enrolling and ≥60% of participants completing daily symptom assessments. After intervention completion, patients rated the helpfulness and convenience of the intervention and symptom monitoring technology. Results: From 12/2021-6/2022, we enrolled 40 out of 66 approached patients (60.6% enrollment rate). Enrolled patients (median age = 58.5 years, 50% female, 75% white, 68% married, 50% gastrointestinal cancers) completed 93.8% of daily symptom assessments. 12 patients (30%) did not complete the intervention due to withdrawal (5), hospice transfer (4), or death (3). Among enrolled patients, 20.0% were enrolled in hospice and 15.4% died at 30 days after hospital discharge. In exit interviews, 100% and 75% rated the intervention and symptom monitoring as helpful, respectively. 83% of patients found the in-home monitoring technology convenient. Conclusions: We found that a three-week Supportive Oncology Care at Home intervention is a feasible approach to providing post-discharge care for high acuity, seriously ill hospitalized patients with advanced cancer. These patients also found the intervention highly acceptable. Future studies will test the efficacy of the intervention for reducing hospital readmissions, improving symptom management and quality of life, and increasing days spent at home near the end of life. Clinical trial information: NCT04637035.
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Oyedeji, Charity I., Tolulpe Oyesanya, Nathan Gray, and John J. Strouse. "Barriers and Facilitators of Advance Care Planning for Older Adults with Sickle Cell Disease." Blood 136, Supplement 1 (November 5, 2020): 58–59. http://dx.doi.org/10.1182/blood-2020-136231.
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Background Life expectancy for individuals with sickle cell disease (SCD) has improved significantly in the last 50 years, creating a new population of older adults with SCD; however, life expectancy of adults with SCD is still up to 30 years shorter than African Americans in the general population and much lower than whites. SCD complications cause significant morbidity, requiring patients to make complex decisions about end of life care. Yet, there is a paucity of literature on SCD advance care planning (ACP), to guide providers on how to address ACP in this population. Thus, the purpose of this study was to assess barriers and facilitators to ACP for older adults with SCD. Methods We recruited 19 older adults with SCD (age > 50) from a comprehensive SCD center in the Southeastern United States. We conducted semi-structured interviews by phone or in person. Interview questions addressed aging with SCD, living beyond SCD life expectancy, experience with health care, experience with end of life care, comfort discussing death and end of life care, presence and nature of prior ACP discussions, and preferences for future ACP discussions. Audio-recorded interviews were transcribed verbatim. The data were analyzed using conventional content analysis. Results The mean age of participants was 57 years (range 50-71) and 47% (n = 9) were female. Most participants were diagnosed with SCD several years after birth and were told that they were not expected to live past age 18. Four of 19 participants had written advanced directives. Most participants were comfortable and willing to discuss ACP and thought that SCD ACP discussions should ideally start in early adulthood. Barriers to ACP included lack of communication, inappropriate contexts for ACP discussions, lack of trust, difficulty navigating ACP documents, and spirituality (Figure 1). Lack of communication included limited to no communication from trusted healthcare providers about ACP preferences. Inappropriate contexts for ACP discussions included being approached at difficult times by unfamiliar providers, such as being asked to complete advance directives while sick in the hospital by a provider who did not know the patient well. Trust was a barrier, as several participants were concerned that being asked about ACP while sick meant providers were giving up on them; others were unsure if they could trust providers or family members to carry out their end of life wishes as written. They reported difficulty navigating ACP documents and several participants incorrectly assumed a lawyer was required to finalize ACP documents. Finally, spirituality was a barrier as some participants reported that end of life planning was inconsistent with their religious beliefs. Facilitators of ACP included discussion at the right time, provider familiarity and knowledge, presence of family, and assistance in completing ACP documents. Participants expressed a desire to have an opportunity to openly communicate their end of life wishes with their provider when they were not sick in the hospital. They preferred discussing ACP with a provider whom they had a good relationship with, was familiar with their history, and they perceived was knowledgeable about SCD. Participants identified their SCD provider, PCP, or pulmonologist as suitable providers to talk to about ACP. Most preferred their family to be present during the ACP discussion. Those that had already completed advance directives at the time of the study received assistance from someone outside the health system to do so, such as help from their church, a lawyer, or their family. Conclusion Older adults with SCD expressed a desire for communication about ACP from trusted providers who are knowledgeable about SCD and want to have ACP conversations when they are feeling well. In addition, having the patient's family present and giving them assistance may increase the patient's comfort in completing their advance directives. The lack of communication from trusted providers or communication from unfamiliar providers about ACP during hospitalizations for acute complications are major barriers to creating advance directives for older adults with SCD. Future research is needed to obtain providers' perspectives on barriers to initiating conversations about ACP with adults with SCD. We will use these results to inform development of patient-centered and culturally-sensitive interventions to improve ACP in adults with SCD. Disclosures Strouse: Takeda: Research Funding.
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Taliotis, D. M., J. D. R. Thomson, and J. L. Gibbs. "Abstracts for the British Congenital Cardiac Association Annual Meeting: The Barbican, London, 24–25 November 2005: Poster Presentations: Assessment of the need for elective balloon atrial septostomy in patients with tricuspid atresia. a 25 year experience at the Yorkshire Heart Centre." Cardiology in the Young 16, no. 3 (June 2006): 320. http://dx.doi.org/10.1017/s1047951106300236.
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Introduction: Significant variation exists in the perceived indications for balloon atrial septostomy in children with tricuspid atresia (TA). Many units advocate early, elective balloon atrial septostomy due to potential progressive narrowing of the interatrial opening, especially after the insertion of an arterial shunt. Our practice is to perform an atrial septostomy only in children with clinical and/or echocardiographic features of a restrictive interatrial communication. The aim of the study was to assess our practice by retrospective evaluation of patients born with tricuspid atresia with particular reference to the clinical fate of the atrial septum. More specifically the frequency of emergency atrial septostomy, the complication rate, the need for delayed septostomy or surgical resection and the longer term outcome were evaluated. Materials and methods: The study was a retrospective review (1980–2005) of the data on 49 live-born patients in our departmental database with a diagnosis of TA. One patient was excluded from the study due to referral to another centre and subsequent loss to follow up. By reviewing the medical notes of the remaining 48 patients we collected data on indications for, and timing of balloon atrial septostomy and subsequent complications and long term outcome. Results: The median time to follow up was 9.5 years (0.7–23.7). The diagnosis group was heterogeneous with 38 (79%) patients diagnosed with TA and normally related great arteries with or without pulmonary stenosis or atresia. The remaining 10 patients had more complex anatomy. Of the 48 patients, 5 (10%) were deemed to require balloon atrial septostomy for a clinically and/or echocardiographically restrictive atrial septum. Three procedures were performed within the first 24 hrs of life and 2 within the first month. One of the patients developed NEC following the septostomy and subsequently died of overwhelming sepsis. One patient required delayed surgical septectomy at 6 years of age, during a bidirectional Glenn operation. Of the remaining 42 patients there were 7 deaths (16%) but none were attributed to a restrictive atrial septum (1–at birth, severe acidosis and multi organ failure due to interrupted aortic arch and poor response to IV Prostin; 1–5 days with Group B streptococcal sepsis; 1–post operative sepsis following insertion of a BT shunt; 1–9 years, acute shunt obstruction; 1–withdrawal of care due to complex anatomy deemed to have a poor prognosis; 2-sudden death at home at 3½ years and 11 years). 26 patients required palliation with an arterial shunt (19–modified BT shunt, 6–Waterston Shunt, 1–ductal stent). None of the patients developed a clinically and/or echocardiographically restrictive atrial septum post procedure or during long term follow-up. Conclusions: We conclude that elective balloon atrial septostomy at presentation may not be necessary in patients born with tricuspid atresia. Accepting the limitations of retrospective data collection we also conclude that progressive narrowing of the interatrial septum at a later date is an unusual occurrence, even after an arterial shunt operation. We recommend that atrial septostomy should only be performed in patients who show obvious clinical and/or echocardiographic evidence of restrictive interatrial communication.
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Kadkhoda, Haleh, Clare Karten, Emily Van Laar, Elisa Weiss, Kevin C. Oeffinger, John Krauss, and Emily S. Tonorezos. "Shared Care For Hematologic Malignancy Survivors: Challenges Between Primary Care Physicians and Hematologist/Oncologists." Blood 122, no. 21 (November 15, 2013): 2958. http://dx.doi.org/10.1182/blood.v122.21.2958.2958.
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Abstract Background Many cancer patients are cured, or have a series of remissions interspersed with periods of re-treatment. In 2006, the Institute of Medicine's From Cancer Patient to Cancer Survivor: Lost in Transition recommended comprehensive treatment summaries and follow-up care plans for all cancer survivors. [Parry 2013] There were about 14 million cancer survivors in the US as of January 2012; this population is expected to be 18 million by 2022. [Siegel 2012] Among survivors, 64% have survived 5 years or more; 40% have survived 10 years or more; and 15% have survived 20 years or more after diagnosis. [de Moor 2013] Many survivors in this growing population experience physical, psychological, and/or financial long-term/ late effects. The complexities of managing cancer survivors suggest their care should not be conceived as a transition from the hematologist/oncologist to the primary care provider, but rather as an ongoing, flexible collaboration determined by individual survivor needs. Methods Polling surveys were conducted within the 2012 online education activity Sharing Care for Survivors of Hematologic Malignancies, developed by The Leukemia & Lymphoma Society and Medscape Oncology. Case-based education was delivered by an expert panel of hematologist/oncologists (Hem/Oncs) and primary care physicians (PCPs) to illustrate effective communication methods and critical communication points between (Hem/Oncs) and (PCPs). Results As of June 30, 116 Hem/Oncs and 171 PCPs overall responded to the polling surveys, which address current practices and barriers in shared care of cancer survivors. Responses were analyzed to identify gaps in continuity of care among specialties. A summary of responses shows the most significant barrier in effective management is the lack of survivorship care plans and treatment summaries (41% Hem/Oncs vs 51% PCPs). Only 8% and 5% of Hem/Oncs and PCPs, respectively, use survivorship care plans, although both Hem/Oncs and PCPs agreed that such plans and summaries are the most useful communication vehicle among professionals (73% Hem/Oncs vs 67% PCPs). PCPs used patient self-reported data more frequently to document cancer treatment, compared with Hem/Oncs (21% vs 7%, respectively); Hem/Oncs used caregiver reports more often than did PCPs (12% vs 3%, respectively). Similar numbers of Hem/Oncs and PCPs estimated that PCPs spend more than 4 hours of non-reimbursed time weekly researching issues related to patient care (47% Hem/Oncs vs 41% PCPs). Despite progress in electronic health records and widespread Internet access, these physicians most typically use the phone to communicate about the management of cancer survivors (64% Hem/Oncs vs 74% PCPs), followed by faxed/mailed letters, with email ranking as least used. Lack of prompt communication between Hem/Oncs and PCPs was the second highest barrier listed by respondents to effective management (22% and 27%, respectively). Conclusion Analysis of the Hem/Onc and PCP learner responses to the polling surveys point to clinical complexities and persistent challenges in the co-management of survivors of hematologic cancers. The challenges relate to communication, technological, healthcare system and healthcare coverage issues.Timely, ongoing communication of the right clinical information between Hem/Oncs and PCPs is essential for optimal management of the growing number of cancer survivors. Hem/Oncs and PCPs devote significant time each week to addressing the cancer survivors' needs; the lack of reimbursed time for PCPs may be an impediment to optimal care. Hem/Oncs and PCPs place a high value on the utility of survivorship care plans; however, they are not widely used. Phone calls are the current preferred communication mode. Until other technological solutions are more widely used to share clinical information, it is important to employ practical solutions, such as providing PCPs with information to help prioritize cancer survivors' follow-up care needs and providing patients/caregivers with brief cancer treatment summaries. Communication strategies to address potentially preventable causes of death, such as cardiac disease and second cancers, as well as acknowledgment and treatment for anxiety and depression related issues [Harrington 2010], which often accompany the uncertainty many cancer survivors live with, are critical. Disclosures: No relevant conflicts of interest to declare.
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Caleffi, Maira, Norah Ana Burchardt, Helio Pasqualotto Scapin, Isabel Crivelatti, Carlos Spode Gomes, Ana Lucia Gomes, and Paula Raffin Pohlmann. "Patient-reported outcomes in metastatic breast cancer: QoL, needs, and expectations of survivors." Journal of Clinical Oncology 35, no. 5_suppl (February 10, 2017): 228. http://dx.doi.org/10.1200/jco.2017.35.5_suppl.228.
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228 Background: Breast cancer is still a leading cause of death and suffering worldwide. To date, metastatic breast cancer (MBC) is a treatable but incurable disease. Molecular subtypes influence outcomes, with recent increase in median overall survival to 56 months in HER2+ disease (Swain et al NEJM 2015). The success of MBC treatment underscores the increasing importance of discussing quality of life (QoL) and patients’ needs. A survey evaluating patient-reported outcomes was carried out in a Brazilian center with the aim of evaluating patient’s QoL, needs and expectations. Methods: In this IRB approved study, MBC patients were selected from clinical database for phone interviews. During the call, verbal consent was obtained and recorded. Patients answered a standardized questionnaire containing 28 questions about their experience with MBC. RedCap database was created with data from interviews for further analysis. Results: A total of 94 patients with MBC were initially screened. From these, 50 were interviewed (24 deceased, 6 declined and 14 had technical problems). Patient’s age ranged from 31-87y. In 44% family income decreased after MBC diagnosis. Median time from diagnosis of MBC to interview was 62 months (range 1-274 months). Most patients (86%) kept themselves informed about MBC; main sources being doctors (100%), internet (76%), media (71%), other patients (54%), and family (48%). Only 6% didn’t know what MBC meant. Majority were on therapy: chemotherapy/injectables (54%), oral medication (36%), and radiation (2%). Most (86%) preferred follow up by a multidisciplinary team, and 18% would prefer exclusive MBC clinics. Only 6% accepted the label “metastatic”. Less popular labels were “advanced disease” (6%), “recurred” (4%), “palliative” (4%), or “disseminated” (0%). They preferred this disease phase be called “controlled disease” (50%) or “chronic disease” (28%). Conclusions: The main sources of information about MBC for patients are the internet and their providers. In this center, communication between providers, policy makers and MBC patients could potentially be improved with terminology changes, since patients would prefer the metastatic phase of their disease be called “Controlled Disease”.
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Maroshi, Valery V., and Geza Horvath. "Raskolnikov’s crime and repentance in Russian and Hungarian literature of the second half of the twentieth century." Imagologiya i komparativistika, no. 18 (2022): 168–90. http://dx.doi.org/10.17223/24099554/18/9.
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The article deals with the creative reception of a complex of motifs “sin - repentance - salvation” and the hero’s moral reflections that form the basis of Crime and Punishment and Fyodor Dostoevsky’s unfulfilled plan of a book about the “Great Sinner.” We analyze the works of several Russian and Hungarian authors of the 1960s-1990s. In Victor Pelevin’s novel Chapayev and Pustota, the hero involuntarily becomes a murderer. Instead of being exiled to Siberia, he ends up in a mental hospital, which functionally serves as a replacement for Raskolnikov’s “punishment” stage - a prison sentence. After leaving the hospital, the hero, who has not accepted the new reality, flees to a Buddhist monastery in Inner Mongolia to escape from the criminalized and dangerous modernity. The motifs of crime and failed repentance of the outsider writer are used by Vladimir Makanin in the novel The Underground or the Hero of Our Time. His hero recognizes Dostoevsky’s authority, projecting the novel’s situation onto his own. However, he rejects the need to repent the murders, since for him Raskolnikov’s story is an “alien” literary plot and a humiliation of his very “self.” The heroes of Limonov’s early prose constantly relate themselves to the marginal heroes and criminals of Dostoevsky. For them, the impossibility of repentance does not cancel the hero’s selfdoubt, his “state of hesitation” that determines, according to Dostoevsky, the behavior of the Great Sinner and Raskolnikov. In Russian prose of the 1990s, the text and plot allusions of which refer to Crime and Punishment, the main antihero is a writer and reader of Dostoevsky who tries on the situations and actions of Dostoevsky’s heroes, ultimately dismissing them as “alien” and “literary.” The classics of modern Hungarian literature, Janos Pilinszky and Miklos Meszoly, admitted that they literally lived inside Dostoevsky’s world. The novels of Meszoly of the 1960s, The Death of an Athlete and Saul, both tell the story of rebirth and conversion of two heroes - the runner Balint and the detective Saul. Balint is lonely and aspires to the absolute, a sports record, for which he is willing to sacrifice everything. He is similar to Dostoevsky’s sinner in his pridefulness. However, before his death, he ascends a mountain. The motifs that accompany his “spiritual ascent” point to the sacred symbolism of rebirth. The final change in the direction and purpose of running turns him into an “athleta Christi”, a repentant proud man. However, the plot of Saul does not follow the Bible to the end and finishes with Saul’s blinding, interrupting the biblical story and not representing his enlightenment as of the future Paul the Apostle. Similarly to Crime and Punishment, the novel unfolds around a murder - a “stoning” of the victim, Stephen the Apostle. Saul, like Raskolnikov, renounces his former self-identification and logic of the Law. The shock in both cases is the sin of murder, the internal experience of the crime. Saul takes the blame for the beating of Stephen. The authors declare no conflicts of interests.
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Silva, Vladimir Araujo da, Rita de Cássia Frederico Silva, Ruth Natalia Teresa Turrini, Sonia Silva Marcon, and Maria Júlia Paes da Silva. "Characteristics of caregivers submitted to music therapy after the death of loved ones." Revista Brasileira de Enfermagem 72, no. 6 (December 2019): 1464–70. http://dx.doi.org/10.1590/0034-7167/2018-0076.
Full textAbstract:
ABSTRACT Objective: To describe the characteristics of bereaved caregivers submitted to post-loss music therapy. Method: This is a cross-sectional database from a randomized clinical trial that performed music therapy for caregivers who lost their loved ones to cancer. The following variables were used for this analysis: sociodemographic, religious beliefs, previous sound-musical experiences, and experiences related to care, loss and repair processes. Descriptive statistical analyzes were performed. Results: Of the 69 participants, 85.5% had a strong bond/secure attachment with their loved ones; 68.1% followed a long death and dying process (> 6 months), which was related to a chronic disease; 88.4% did not participate in conspiracy of silence, suggesting a satisfactory communication; 60.9% reported receiving spiritual/religious support, suggesting healthy and continent support; and all participated in funeral rites. Conclusion: The process of elaborating the bereavement of caregivers indicated the presence of protective factors.