Caring for the Stonewall Generation: Assessment of Staff Training for Transgender Persons Living in Long Term Care

Transgender persons who came of age in the late 1960s are considered LGBTQ+ elders - The Stonewall Generation. These persons experience unique bio-psychosocial challenges, often complicated by a history of a lack of access to good medical care and social supports. Discrimination and bias can influence the provision of care and the protection of privacy for transgender or gender non-conforming persons. Staff training is essential to provide ethical care for aging trans persons who require residential care. This presentation examines current staff training modules of 100 Long Term Care (LTC) facilities, assessing training needs to provide affirming, culturally competent, and ethical care for sexual and gender minorities. Keywords: cultural competence; Long Term Care; staff training; transgender

Word weapons? Letters to editors

This short commentary argues that academic letters to editors on politically-contested topics must be treated with particular ethical care. The interface between science and Māori/Indigenous knowledge is one such topic, vulnerable to inadequate but commonly-held ideas about both science and Māori/Indigenous knowledge. Letters to editors by scientists are personal opinion but carry the imprimatur of science expertise. When such letters contain lay views masquerading as expert opinion, they have negative effects on both science and Māori knowledge, hence qualifying to be described as ‘word weapons’.

Raising the bar? The impact of the UNISON ethical care campaign in UK domiciliary care

This article critically analyses a major trade union initiative in the United Kingdom to raise standards in public contracts for domiciliary care, and in turn to improve wages and working conditions for outsourced care workers. The campaign successfully built alliances with national employer representatives, and around 25 per cent of commissioning bodies in England, Scotland and Wales have signed a voluntary charter that guarantees workers an hourly living wage, payment for travel time and regular working hours. The campaign overall, however, has had only limited effects on standards across the sector, in which low wages, zero-hours contracts and weak career paths predominate. Furthermore, the campaign has not yet yielded significant gains in terms of union recruitment, although there are signs of sporadic mobilisations of care workers in response to localised disputes.

Voice, Counterspaces, and Ethical Care in Research With Black Women With Trauma and Incarceration Histories

Formerly incarcerated women face diverse challenges to re-entry, which include recovering from health illnesses and trauma to navigating various systems of stigma and surveillance. It is these multilevel challenges to reintegration that also make formerly incarcerated women vulnerable participants in research. As such, this qualitative study explores how 28 formerly incarcerated Black women experience the research interview process. Findings revealed that women participated in research because these contexts were viewed as spaces for “truth telling” and increasing awareness that can effect changes in the lives of communities facing trauma. Moreover, the participants perceived the interview process to allow them to share their pasts in ways that can promote healing and recovery. Participants also discussed risks of emotional distress and anticipatory fears regarding imbalanced researcher–participant dynamics. The implications for antioppressive, compassionate interviewing practices underscore the need for greater considerations of the role of the researcher and how they contribute to women’s recovery from complex trauma and illness.

Experiences of stigma and discrimination among people living with dementia and family carers in Brazil: qualitative study

This study aimed to understand stigma in relation to people living with dementia in São Paulo, Brazil. A critical narrative inquiry methodology was used. Home-based semi-structured interviews were conducted between January and March 2020 with six people living with dementia and 15 family carers. Data analysis was conducted using inductive and deductive techniques. The latter was informed by Link and Phelan's sociological theory of stigma. We found that dementia was commonly viewed by people living with dementia as part of ageing and carers reported low levels of knowledge and awareness about the condition. To avoid negative reactions from people, people living with dementia managed the negative views of dementia by minimising and normalising the condition, by expressing their ability to live an active life, and by emphasising the positive impacts of dementia in their lives. Fear of negative reactions appeared to lead to a selective disclosure of their diagnosis. Among carers, stigmatising attitudes coincided with a strong willingness to provide good care, to protect the person cared for, as well as to understand and validate their own caring experiences, rather than to cause any harm. In doing so, however, carers ended up depersonalising and infantilising people living with dementia, underestimating their capacities, demanding ‘obedience’ and restricting the person's freedom. There is a need to increase awareness about dementia and to provide support and training on person-centred and ethical care for carers in Brazil.

Ethical care requires pragmatic care research to guide medical practice under uncertainty

Background The current research-care separation was introduced to protect patients from explanatory studies designed to gain knowledge for future patients. Care trials are all-inclusive pragmatic trials integrated into medical practice, with no extra tests, risks, or cost, and have been designed to guide practice under uncertainty in the best medical interest of the patient. Proposed revision Patients need a distinction between validated care, previously verified to provide better outcomes, and promising but unvalidated care, which may include unnecessary or even harmful interventions. While validated care can be practiced normally, unvalidated care should only be offered within declared pragmatic care research, designed to protect patients from harm. The validated/unvalidated care distinction is normative, necessary to the ethics of medical practice. Care trials, which mark the distinction and allow the tentative use of promising interventions necessarily involve patients, and thus the design and conduct of pragmatic care research must respect the overarching rule of care ethics “to always act in the best medical interest of the patient.” Yet, unvalidated interventions offered in contexts of medical uncertainty cannot be prescribed or practiced as if they were validated care. The medical interests of current patients are best protected when unvalidated practices are restricted to a care trial protocol, with 1:1 random allocation (or “hemi-prescription”) versus previously validated care, to optimize potential benefits and minimize risks for each patient. Conclusion Pragmatic trials can regulate medical practice by providing (i) a transparent demarcation between unvalidated and validated care; (ii) norms of medical conduct when using tests and interventions of yet unknown benefits in practice; and eventually (iii) a verdict regarding optimal care.

Ethical care during COVID-19 for care home residents with dementia

The COVID-19 pandemic has had a devastating impact on care homes in the United Kingdom, particularly for those residents living with dementia. The impetus for this article comes from a recent review conducted by the authors. That review, a qualitative media analysis of news and academic articles published during the first few months of the outbreak, identified ethical care as a key theme warranting further investigation within the context of the crisis. To explore ethical care further, a set of salient ethical values for delivering care to care home residents living with dementia during the pandemic was derived from a synthesis of relevant ethical standards, codes and philosophical approaches. The ethical values identified were caring, non-maleficence, beneficence, procedural justice, dignity in death and dying, well-being, safety, and personhood. Using these ethical values as a framework, alongside examples from contemporaneous media and academic sources, this article discusses the delivery of ethical care to care home residents with dementia within the context of COVID-19. The analysis identifies positive examples of ethical values displayed by care home staff, care sector organisations, healthcare professionals and third sector advocacy organisations. However, concerns relating to the death rates, dignity, safety, well-being and personhood – of residents and staff – are also evident. These shortcomings are attributable to negligent government strategy, which resulted in delayed guidance, lack of resources and Personal Protective Equipment, unclear data, and inconsistent testing. Consequently, this review demonstrates the ways in which care homes are underfunded, under resourced and undervalued.