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1.
J Med Eng Technol ; 46(6): 558-566, 2022 Aug.
Article in English | MEDLINE | ID: mdl-36062509

ABSTRACT

The successful development and implementation of any healthcare technology requires input from multiple stakeholders including clinical leads, trust information technology directorates as well as project management and procurement. In this process however, a key stakeholder that is often overlooked is the patient.This paper illustrates the crucial importance of patient involvement to avoid poor design and poor uptake of technology and subsequently poor health outcomes.To highlight this, we share a case example evidencing involvement of people with lived experience of foot ulcers resulting from Diabetic foot neuropathy throughout identification of unmet technology needs, design requirements for the device and iterative device development and evaluation.


Subject(s)
Diabetes Mellitus , Diabetic Foot , Biomedical Technology , Diabetic Foot/therapy , Humans , Respect , Technology
2.
BMC Geriatr ; 22(1): 732, 2022 09 05.
Article in English | MEDLINE | ID: mdl-36064353

ABSTRACT

INTRODUCTION: Most cancers occur in older individuals, who are more vulnerable due to functional impairment, multiple comorbidities, cognitive impairment, and lack of socio-familial support. These can undermine patients' sense of dignity. This study seeks to compare dignity scores in older patients with advanced cancer on sociodemographic and clinical variables and analyze the predictive value of anxiety, depression, functional limitations, and social support on dignity scores. METHODS: A prospective, multicenter, observational study conducted with participation of 15 hospitals in Spain from February 2020 to October 2021. Patients with newly-diagnosed, advanced cancer completed the dignity (PPDS), anxiety and depression (BSI), Social Support (Duke-UNC-11), and functional limitations (EORTC-C30) scales. Lineal regression analyses explored the effects of anxiety, depression, functional status, and social support on dignity, adjusting for sociodemographic and clinical variables. RESULTS: A total of 180 subjects participated in this study. The results of the correlation analysis revealed that dignity correlated negatively with anxiety, depression, and sex, and positively with social support, functional status, and longer estimated survival. Thus, women, and more anxious and depressed individuals scored lower on the dignity scale, whereas patients with more social support, fewer functional limitations, and longer estimated survival scored higher. CONCLUSION: In conclusion, being female, having a lower educational level, lower estimated survival, depression, anxiety, less social support, and limited functionality are correlated with less dignity in the elderly with advanced cancer. It is a priority to manage both physical and psychological symptoms in patients with unresectable advanced cancer to mitigate psychological distress and increase their sense of dignity.


Subject(s)
Neoplasms , Respect , Aged , Anxiety/psychology , Depression/diagnosis , Depression/epidemiology , Depression/psychology , Female , Humans , Male , Neoplasms/epidemiology , Neoplasms/psychology , Prospective Studies , Quality of Life/psychology , Surveys and Questionnaires
4.
Cien Saude Colet ; 27(10): 3913-3922, 2022 Oct.
Article in Portuguese, English | MEDLINE | ID: mdl-36134797

ABSTRACT

This essay explores the relationship between diversity and public health by addressing tensions related to classifications and recognition in the field of HIV and AIDS policy. The objective is to reflect on how classificatory and operative categories are articulated within the scope of programmatic responses towards the social production of differences and inequalities. To do so it draws from the theoretical framework of studies on vulnerability and recognition and from a methodology that includes a critical review of the literature on the category men who have sex with men (MSM) and ethnographic material, derived from the authors' research and a literature review related to social movements, and research and policies focused on lesbians, gays, bisexuals, transvestites and transsexuals (LGBT). It reviews how the MSM category was constructed in the field of HIV and AIDS prevention policies at an international level, situating political actors and tensions. It problematizes these tensions by analyzing processes of production of political subjects as well as changes in socio-state relations that involve LGBT. It emphasizes the importance of considering how differences and inequalities emerge in socio-political processes and of dedicating studies to improve policies, ensuring an effectively more respectful care.


Este ensaio explora a relação entre diversidade e saúde pública ao abordar tensões que envolvem classificações e reconhecimento no campo das políticas de HIV e Aids. Objetiva refletir sobre como se articulam categorias classificatórias e operativas no âmbito das respostas programáticas em relação à produção social de diferenças e desigualdades. Para tanto, parte do referencial teórico dos estudos sobre vulnerabilidade e reconhecimento e de metodologia que inclui revisão crítica da literatura sobre a categoria HSH e material etnográfico oriundo de pesquisas das autoras e de revisão de literatura, relativo ao movimento social, pesquisas e políticas com foco em lésbicas, gays, bissexuais, travestis e transexuais (LGBT). Recupera o processo de construção da categoria HSH no campo das políticas de prevenção de HIV e Aids em âmbito internacional, situando atores políticos e tensões. Problematiza essas tensões ao analisar processos de produção de sujeitos políticos e mudanças nas relações socioestatais que envolvem LGBT. Enfatiza a importância de considerar como diferenças e desigualdades emergem nos processos sociopolíticos e de destinar estudos para aprimorar políticas, assegurando um cuidado efetivamente mais respeitoso.


Subject(s)
Acquired Immunodeficiency Syndrome , HIV Infections , Sexual and Gender Minorities , Acquired Immunodeficiency Syndrome/prevention & control , Dissent and Disputes , Female , HIV Infections/prevention & control , Health Policy , Homosexuality, Male , Humans , Male , Respect
5.
Psychiatr Danub ; 34(Suppl 8): 71-74, 2022 Sep.
Article in English | MEDLINE | ID: mdl-36170706

ABSTRACT

Dignity Therapy (DT) is a multi-dimensional, brief and individual psychotherapeutic intervention, designed to increase the sense of dignity in patients. The aim of our study was to evaluate the effectiveness of Dignity Therapy in a group of patients suffering from major depressive disorder or bipolar disorder. The results of the study in a small group of patients showed the effectiveness of DT. The PDI (Patient Dignity Inventory Scores) showed a statistically significant difference in the whole group of patients with a reduction in the mean overall score (T0 vs T1 = Mean Difference: 13.700, T-Score: 4.834, Eta squared: 0.709, p: 0.001, statistically significant). However, there is a need to deepen the study to try to offer an opportunity for treatment in this group of patients.


Subject(s)
Bipolar Disorder , Depressive Disorder, Major , Psychiatric Rehabilitation , Bipolar Disorder/therapy , Depression , Depressive Disorder, Major/therapy , Humans , Respect
6.
Nurs Sci Q ; 35(4): 416-418, 2022 Oct.
Article in English | MEDLINE | ID: mdl-36171696

ABSTRACT

Values and expression of values reflect an explicit-tacit coming to know, and value priorities sculpt theoretical knowledge and practice. The author in this article proposes that values, theory, and practice provide a connectedness among persons, families, and communities that promotes the dignity of persons. The promotion of dignity of persons goes beyond a framework that only focuses on the critical elements of missed or incomplete nursing care.


Subject(s)
Nursing Care , Respect , Humans
7.
Int J Palliat Nurs ; 28(9): 419-425, 2022 Sep 02.
Article in English | MEDLINE | ID: mdl-36151985

ABSTRACT

BACKGROUND: The use of the standardised nursing language aims to accurately represent clinical practice, contributing to proper documentation and the creation of evidence-based practice. AIMS: To validate nursing interventions (NI) for patients in palliative care, structuring these using the Dignity-Conserving Care Model. METHODS: A methodological study was conducted, developed according to the recommendations of the International Council of Nurses (ICN) and anchored in the Dignity-Conserving Care Model. The NI were developed in four stages: 1) construction of NI, based in the International Standards Organisation's standard (18.104:2014); 2) content validation by 26 expert nurses; 3) cross-mapping with the NIs contained in the International Classification for Nursing Practice (ICNP®) catalogue, Palliative Care for Dignified Dying, to identify those already existing in the catalogue; and 4) structuring the NI based on the concepts of the Dignity-Conserving Care Model. FINDINGS: 209 NI were validated and grouped into categories, namely: illness-related concerns; dignity-conservation repertoire; social dignity inventory. Of these, 183 were new and 26 already existed in the ICNP® Catalogue. CONCLUSION: The study presents new insights into palliative care in Brazil and presents 183 new NI in addition to those already published by the ICN.


Subject(s)
Hospice and Palliative Care Nursing , Nursing Care , Standardized Nursing Terminology , Humans , Palliative Care , Respect
8.
J Eval Clin Pract ; 28(5): 705-710, 2022 Oct.
Article in English | MEDLINE | ID: mdl-36053567

ABSTRACT

Since its foundation in 2010, the annual philosophy thematic edition of this journal has been a forum for authors from a wide range of disciplines and backgrounds, enabling contributors to raise questions of an urgent and fundamental nature regarding the most pressing problems facing the delivery and organization of healthcare. Authors have successfully exposed and challenged underlying assumptions that framed professional and policy discourse in diverse areas, generating productive and insightful dialogue regarding the relationship between evidence, value, clinical research and practice. These lively debates continue in this thematic edition, which includes a special section on stigma, shame and respect in healthcare. Authors address the problems with identifying and overcoming stigma in the clinic, interactional, structural and phenomenological accounts of stigma and the 'stigma-shame nexus'. Papers examine the lived experience of discreditation, discrimination and degradation in a range of contexts, from the labour room to mental healthcare and the treatment of 'deviancy' and 'looked-after children'. Authors raise challenging questions about the development of our uses of language in the context of care, and the relationship between stigma, disrespect and important analyses of power asymmetry and epistemic injustice. The relationship between respect, autonomy and personhood is explored with reference to contributions from an important conference series, which includes analyses of shame in the context of medically unexplained illness, humour, humiliation and obstetric violence.


Subject(s)
Respect , Shame , Social Stigma , Child , Delivery of Health Care , Humans , Philosophy
9.
Perspect Biol Med ; 65(2): 171-178, 2022.
Article in English | MEDLINE | ID: mdl-35938424

ABSTRACT

This article uses multiple interwoven personal narratives to explicate the relationships among several concepts crucial to bioethics brought into focus by Robert Perske's 1972 article on "The Dignity of Risk," including dignity, risk, paradox, disability, autonomy, uncertainty, diagnosis, and prognosis. The use of personal narrative as a form of evidence and a knowledge-making method allows for the exploration of the meaning-making work of language and story and the introduction of humanities and social science concepts such as stigma management and dignity maintenance into Perske's concept of the dignity of risk. The personal narratives the article draws include Mark, a character in Perske's article; W. E. B. Du Bois; Frantz Fanon; and myself. Finally, the article calls for humility in medical science's predictive narratives for all patients, but particularly for people with disabilities.


Subject(s)
Bioethics , Personhood , Humans , Respect
10.
Perspect Biol Med ; 65(2): 179-188, 2022.
Article in English | MEDLINE | ID: mdl-35938425

ABSTRACT

Requesting accommodations such as signed language interpreters in health-care settings is an activity that can present risk to the deaf patient. By providing space for considerations of risk-taking for particular kinds of experiences that are not universally shared, such as interpreter-mediated experiences, the notion of the dignity of risk can be expanded. The author uses two examples of signed language interpreting in health-care settings to demonstrate how the dignity of risk emerges. This is followed by an analysis of the concept of epistemic injustice as applied to insider knowledge of the deaf community and the potential harms to one's dignity resulting from this asymmetry of knowledge. The essay concludes with an evaluation of concerns about dignity and risk for deaf individuals.


Subject(s)
Respect , Sign Language , Humans
11.
Perspect Biol Med ; 65(2): 189-198, 2022.
Article in English | MEDLINE | ID: mdl-35938426

ABSTRACT

The dignity of risk implies respect for individuals' right to make their own decisions, to participate in a broad range of desired activities, even if those activities have risk, and to expose themselves to potential consequences or learning opportunities. Historically, a more paternalistic approach, done as a benevolent assurance of safety, has been taken with individuals with intellectual disabilities. While optimizing safety, this approach can limit opportunity and, more importantly, limit the dignity of the individual. However, the concern for safety and the sense of responsibility to keep individuals with intellectual disabilities from harm is solidly entrenched and is not without some merit. "Supported decision-making" can offer an alternative to guardianship for some individuals, providing structured processes to enhance full participation. Strategies to involve individuals with intellectual disabilities in their own decision-making and to optimize the safety of those decisions include expanding the discussion of the concept of dignity of risk with family members and care providers of individuals with intellectual disabilities before they turn 18 years old; providing social-skills training and other educational opportunities that promote the likelihood of success in activities and decision-making; and maintaining guardrails when needed to prevent serious harms.


Subject(s)
Intellectual Disability , Adolescent , Family , Humans , Learning , Respect
12.
Perspect Biol Med ; 65(2): 199-206, 2022.
Article in English | MEDLINE | ID: mdl-35938427

ABSTRACT

Dignity of risk, as originally defined by Robert Perske (1972), focused on the treatment of people with intellectual impairments and the need to shift away from paternalism. However, the term also resonates deeply in other health-care situations today. The concept of dignity of risk is tricky to operationalize in many contexts, including in medical decision-making during rehabilitation. In some cases, clinicians may focus solely on risk and how best to "minimize" risk to patients, rather than on understanding and fleshing out options and choices. Questions naturally surface, such as: whose risk are we seeking to limit and at what cost to a patient's dignity? How do personal choices relate to patients' values and quality of life? Can we employ a shared decision-making model when discussing risk taking? When we look closely, we recognize that dignity of risk is at play when cognitively intact patients disregard medical advice that is viewed as the standard of care. This article closely examines this type of risk, the context in which it arises in rehabilitation, and opportunities for shared decision-making that can integrate dignity of risk principles.


Subject(s)
Medicine , Respect , Humans , Paternalism , Quality of Life
13.
Perspect Biol Med ; 65(2): 213-220, 2022.
Article in English | MEDLINE | ID: mdl-35938429

ABSTRACT

Dignity and indignity, risk and safety, are pairs of concepts on a continuum, and this continuum can have fuzzy boundaries and differing interpretations. Risk is typically defined and apprehended by an actor and an observer and can shift according to time, place, context, and voice. Moreover, when the dignity of risk is considered, it typically involves the subject who is deemed to be taking the risk(s) and the other who is considering protection or safeguards and weighing in at a specific moment in time, focusing on a window of information and conceptualization. This can lead to reflexive responses and confirmatory biases. This article draws on the author's experience as a psychologist and clinical ethicist and focuses on judgments about the other, the meaning of risk, and the confounding nature of human perceptions and attributions about risk. As humans in relationship with each other, we are imperfect evaluators of risk for the other. Humility and an openness to situational factors may open up much needed space for reflection.


Subject(s)
Respect , Humans
14.
Perspect Biol Med ; 65(2): 232-241, 2022.
Article in English | MEDLINE | ID: mdl-35938431

ABSTRACT

Hospitals have both a regulatory and an ethical mandate to craft a safe discharge plan for all patients. These plans can become a source of conflict between clinicians and patients when they have differing conceptions of safety and best interests. In bioethics principles this conflict can be characterized as the tension between the patient's right to make medical decisions in accordance with their values, or autonomy, and the clinician's obligation to provide best care to their patients, or beneficence. Employed independently, these principles can be limiting and may not accommodate the nuanced narrative of patients who lack decisional capacity but have expressed clear preferences about where they wish to live. Utilizing case-based discussion, this article explores how the inclusion of Robert Perske's dignity of risk principal in bioethics consultation can support clinicians in expanding their conceptions of beneficence and safety, providing the team with the freedom to craft discharge plans that keep the patient at the center of the narrative.


Subject(s)
Bioethics , Personal Autonomy , Beneficence , Humans , Referral and Consultation , Respect
15.
Perspect Biol Med ; 65(2): 242-251, 2022.
Article in English | MEDLINE | ID: mdl-35938432

ABSTRACT

Managing risk is a necessary component of living a full moral life. Evaluating which risks are acceptable, for what reasons, in what conditions, and then taking actions based on those evaluations, are exercises of moral agency-of intentionally actualizing values that shape an embodied personhood. Health-care institutions in the United States are risk averse, designed to manage risk in ways that can impede the full exercise of patients' moral agency. Home hospice care, conceived as an alternative to institutionally based end-of-life care and driven explicitly by patient goals and values, would seem to be an environment in which patients are empowered to express the full spectrum of their personhood-including making decisions about risk consistent with their values. While home hospice patients have more discretion over risk than patients receiving care in institutions like hospitals and nursing homes, efforts to limit that discretion abound. Such limits can be experienced by patients as failures to recognize their dignity as persons, even while those limits are perceived by others as necessary to preserve that very dignity by keeping them safe. This article uses a running case study to reconceptualize "risk" in home hospice care by (1) challenging the clinical assumption that physical harm is the most important lens through which to view risk, and (2) presenting and applying the concept of positive risk-taking as one way to develop the concept and assessment of risk more fully.


Subject(s)
Hospice Care , Hospices , Humans , Nursing Homes , Personhood , Respect , United States
16.
Perspect Biol Med ; 65(2): 252-261, 2022.
Article in English | MEDLINE | ID: mdl-35938433

ABSTRACT

For Americans with significant disability, decisions about where to live are common flashpoints for the dignity of risk principle. Typically, a health-care professional, like the person's primary care physician, argues that the person is unsafe living at home and therefore must enter a nursing home. However, most people-even with extensive activities of daily living support needs-want to remain home in their communities. The belief that nursing homes offer safer residential environments is unproven and highly suspect. Furthermore, removing people from their personal home comforts diminishes their quality of life. Nonetheless, despite the clear moral imperative of the dignity of risk principle, many factors in the United States impede people with significant disability from remaining at home. Ableist and stigmatized attitudes of physicians about quality of life among people with disability are potential contributors. Few people have adequate financial resources to afford the personal assistance services (PAS) they need for daily basic supports. Medicaid, the major public payor for PAS, is difficult to join, varies widely by state, and has long waiting lists for home and community-based services. These issues are explored using stories from the author's friend Michael, who has significant physical disability and lives home alone.


Subject(s)
Activities of Daily Living , Disabled Persons , Humans , Nursing Homes , Quality of Life , Respect , United States
17.
Perspect Biol Med ; 65(2): 262-273, 2022.
Article in English | MEDLINE | ID: mdl-35938434

ABSTRACT

Historically, people with intellectual/developmental disabilities (IDD) lived in institutions with little contact with the community. Having a label of "mental retardation" meant they were incapable of living and working outside of the institution. These individuals were protected from risk and harms and had little input into how they lived their lives. Perske (1972) challenged the idea that persons with IDD necessarily had to be protected from the harms one faces in daily life. He championed the principle of "dignity of risk," respecting their right to weigh risks and harms of their choices. Over time, federal, state, and local agencies embraced the idea that people with IDD should be integrated into communities and receive supports so they may live their lives to the fullest. This article discusses how a community agency worked with their clients with IDD to balance their personal liberties with acceptable risks as they live and work in the community. Approaches such as the use of a Risk Committee or the empowerment of direct care workers in assessing risks are described through case illustrations.


Subject(s)
Developmental Disabilities , Intellectual Disability , Child , Health Personnel , Humans , Male , Respect
18.
Perspect Biol Med ; 65(2): 274-282, 2022.
Article in English | MEDLINE | ID: mdl-35938435

ABSTRACT

Of the more than 47 million people living with Alzheimer's disease or other types of dementia, an estimated one-third live alone. This essay explores the idea of the dignity of risk as it presents in the lives of people living alone with dementia, an underrepresented group in research, and considers the tension between safeguarding people with dementia from risks associated with disease progression and denying them the experience of risk as an aspect of everyday life. For individuals, risk is associated with vulnerability, choice, uncertainty, and the pursuit of goals, and may hold positive and negative connotations. This essay considers how myriad choices in the everyday lives of people living alone with dementia present some degree of risk, and how the ability to make these choices may constitute a life of dignity, replete with meaning and richness. The essay concludes with suggestions about how to reframe living alone with dementia as a way of living that can be better socially supported.


Subject(s)
Dementia , Home Environment , Humans , Respect , Uncertainty
19.
Perspect Biol Med ; 65(2): 295-306, 2022.
Article in English | MEDLINE | ID: mdl-35938437

ABSTRACT

Although the notion of "dignity of risk" has primarily been used in reference to adolescents with disabilities, this concept can be applied to all adolescents, as parents and guardians are challenged by how to balance adolescents' need for self-determination with the need for safety and supervision. In the context of maturing cognitive and emotional neural circuits, normative adolescent development involves temporal shifts in social and environmental factors that are inherently associated with both higher risk-taking and opportunities for growth and new learning. The challenge for parents of balancing risk and opportunity is influenced by social, cultural, and environmental factors, previous experience, personality, and the perceived capability of the adolescent. When perceived capability is lower, the challenge becomes even more acute, such as when an adolescent has a developmental, physical, or psychiatric disability that impacts cognitive, emotional, or adaptive functioning. This article reviews the literature on normative brain development from the perspective of balancing risk and self-determination in adolescence and discusses the implications for families and clinicians across a range of ability and disability. Potential approaches to fostering self-determination are discussed.


Subject(s)
Emotions , Respect , Adolescent , Humans
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