Designing Palliative Care Facilities to Better Support Patient and Family Care: A Staff Perspective

Objective: To contribute staff perspectives on the design of palliative care facilities to better align with the philosophy of palliative care, in support of patient, family, and staff well-being. Background: The receipt of palliative care differs from other inpatient experiences owing to its distinct philosophy of care, longer lengths of stay, a greater presence of family members, and more frequent end-of-life events. While research regarding the optimal design of palliative care environments recognizes these differences, this knowledge has been slow to exert change on the guidelines and procurement processes that determine the design solutions possible within these settings. Sustained research attention is required. Methods: An online survey, comprising a series of open-ended questions, elicited the perceptions of palliative care staff regarding the relationship between the physical environment and the distinct philosophy of palliative care. Results: Responses from 89 Australian-based palliative care professionals confirmed the high value that staff place on environments that offer privacy, homeliness, safety, and access to gardens to assist the delivery of optimum care. Conclusions: Our findings illustrate that the implications of privacy and homeliness extend far beyond the patient room and that homeliness is about more than an aesthetic of comfort. This highlights a broader capacity for design to better support the philosophy of palliative care. Importantly, the data reveal a key relationship between staff well-being and the environments in which they work; environments that are unable to match the quality of care that staff aspire to deliver can engender frustration and distress.

Proactive Variant Effect Mapping to Accelerate Genetic Diagnosis for Pediatric Cardiac Arrest

While genetic testing is becoming standard of care for patients with potentially inherited cardiovascular disease, the prevalence of uncertain results severely limits its utility. One promising approach is to generate variant effect maps that report the function of all possible variants in a gene prospectively. The proactive clinical application of these maps is nascent, and requires careful integration with current American College of Medical Genetics guidelines for variant interpretation. Here, we describe three pediatric cases of cardiac arrest or sudden cardiac death with variants of uncertain significance in calmodulin genes. We demonstrate the prospective clinical utility of a calmodulin variant effect map to inform variant interpretation, and therefore diagnosis and family care, in each case. This study was approved by the Stanford University and Vanderbilt University Medical Center IRBs. Consent was waived based on low risk of de-identified retrospective data collection per the IRB.

Caregiving in a Pandemic: COVID-19 and the Well-Being of Family Caregivers 55+ in the United States

Little is known about the effects of Coronavirus disease 2019 (COVID-19) on older family caregivers. Using data from a national sample of 2,485 U.S. adults aged ≥55, we aimed to describe the magnitude of disruptions to family care arrangements during the initial wave of the COVID-19 pandemic, and the associations between these disruptions and the mental health outcomes (depression, anxiety, loneliness, and self-rated health) and employment outcomes (job loss or furlough, hours or wages reduced, transition to work-from-home) of family caregivers. We found that COVID-19 disrupted over half of family caregiving arrangements, and that care disruptions were associated with increased depression, anxiety, and loneliness among caregivers, compared with both noncaregivers and caregivers who did not experience disruptions. Family caregivers who experienced pandemic-related employment disruptions were providing more care than caregivers who did not experience disruptions. These findings highlight the impact of the pandemic on an essential and vulnerable health care workforce.

An Inventory of Deceased Donor Family Care and Contact Between Donor Families and Recipients in 15 European Countries

Families of organ donors play an important role in the deceased organ donation process. The aim of this study was to gain insight into donor family care by creating an inventory of practice in various European countries. A questionnaire about donor family care and contact between donor families and recipients was developed. Representatives of the organ donor professionals of 15 European countries responded (94%). The donor coordinator plays a key role in care for the donor family. All countries provide information about the donation results to the families, although diminished due to privacy laws. Anonymous written contact between donor families and recipients is possible in almost all countries and direct contact in only a few. Remembrance ceremonies exist in most countries. Half of the respondents thought the aftercare could improve. This first inventory shows that differences exist between countries, depending on the organisation of the donation process, the law and the different role of the professionals. Direct contact between donor families and recipients is rarely supported by the donation organisation. To date there has been limited research about the experience of donor family aftercare and we would urge all donation organisations to consider this as a priority area.

Palliative care in the pre-hospital service in Brazil: experiences of health professionals

Background An integrated care network between emergency, specialized and primary care services can prevent repeated hospitalizations and the institutionalized death of terminally ill patients in palliative care (PC). To identify the perception of health professionals regarding the concept of PC and their care experiences with this type of patient in a pre-hospital care (PHC) service in Brazil. Methods Study with a qualitative approach, of interpretative nature, based on the perspective of Ricoeur’s Dialectical Hermeneutics. Results Three central themes emerged out of the professionals’ speeches: (1) unpreparedness of the team, (2) decision making, and (3) dysthanasia. Conclusions It is necessary to invest in professional training associated with PC in the home context and its principles, such as: affirming life and considering death as a normal process not rushing or postponing death; integrating the psychological and spiritual aspects of patient and family care, including grief counseling and improved quality of life, adopting a specific policy for PC that involves all levels of care, including PHC, and adopt a unified information system, as well as more effective procedures that favor the respect for the patients’ will, without generating dissatisfaction to the team and the family.

全人照護及其教育訓練與評值

<p>目的：全人照護是對病人身體、心理、社會層面及靈性全面照護的態度與行為，需要醫療院所投注多專 業、跨領域且有效率又有品質的整合服務，才能滿足病人「一站式服務、一次購足」的需求。本文之目的在於詮釋全人照護之真諦、內涵、教育訓練與評值。</p> <p>方法：藉由闡釋全人照護的素養與能力，強調推廣全人照護需要多面向的教育訓練加以養成，並發展以能力為基礎的評值方法。</p> <p>結果：醫療人員需要終身持續學習有關全人照護的核心知識與技能、醫療專業照護、同理心與心理支持、就醫行為和家庭照護，以及生命關懷及和臨終照護，並佐以適合及一致性的評值標準，方能系統性的推廣全人照護。</p> <p>結論：本文探討全人照護的真諦、如何推動全人照護及如何實施全人照護之教育訓練與評值，作為醫療院所推動全人照護之參考。</p> <p>&nbsp;</p><p>Objective: Holistic care is an approach that involves consideration of the physical, emotional, social, and spiritual wellbeing of a patient. It involves multidisciplinary, interprofessional integrated teams with members who educate, cooperate with, and respect each other to offer one-stop fulfillment of patient needs. This article explains the core values and intentions of holistic care and the relevant education, training, and assessments.</p> <p>Methods: By explaining the competencies of holistic care, this article argues that the promotion of holistic care necessitates multidimensional education, training, and competency-based assessments.</p> <p>Results: To systematically promote holistic care, accompanied by appropriate and consistent assessment standards, health care providers must continue to learn about the main components of holistic care, including its required knowledge and competencies, professional medical care empathy and psychological support, the praxeology of healthcare seeking, family care, and end-of-life and hospice care.</p> <p>Conclusion: This article discusses the core values of holistic care; how to promote holistic care; and how to implement education, training, and assessments in the field of holistic care and may therefore serve as a reference for holistic care training in medical settings.</p> <p>&nbsp;</p>

Vulnerability and quality of life of older persons in the community in different situations of family care

ABSTRACT Objective: to correlate socio-contextual aspects, physical vulnerability and quality of life of older persons in the community in different situations of family care. Methods: epidemiological, a cross-sectional and analytical study, with elderly people in the community (n=769), with application of the instruments: Vulnerable Elders Survey-13 (VES-13), World Health Organization Quality of Life for Older Persons (WHOQOL-OLD) and the World Health Organization Quality of Life (WHOQOL-BREF); and socio-contextual data questionnaire. Results: the population assessed presented an average of regular quality of life in both the WHOQOL-BREF and the WHOQOL-OLD. Older non-vulnerable persons (62.2%) and those with close family contact (82.6%) have a better quality of life than the vulnerable (p<0.0001). Conclusion: lower quality of life scores and more distant families are related to vulnerable elderly people; thus, the assessment of family proximity and physical vulnerability of older persons is shown to be an important factor in improving quality of life.

Zpráva o projektu mySupport Study

The aim of the mySupport Study, which runs from 2019 to 2022, is to implement the psychosocial education intervention Family Care Decision Support (FCDS) in 6 countries in Europe and North America and to develop guidelines for its implementation, as well as to evaluate its benefits for caregivers of people with dementia. Website: https://mysupportstudy.eu/