Sujet(s)
Édition de gène , Humains , Édition de gène/éthique , Grossesse , Femelle , Diagnostic prénatal/éthique , Personne humaineSujet(s)
Fécondation in vitro , Accessibilité des services de santé , Personne humaine , Humains , Fécondation in vitro/éthique , Femelle , Grossesse , Accessibilité des services de santé/éthique , États-Unis , Interruption légale de grossesse/éthique , Avortement provoqué/éthique , Début de la vie humaine/éthiqueRÉSUMÉ
PURPOSE: Palliative care patients experience chronic sorrow with loss in dignity and meaning in life. Logotherapy is an effective way to cope with loss. This study aimed to evaluate the effect of logotherapy on chronic sorrow, dignity, and meaning in life of palliative care patients. METHODS: This study was conducted with 58 adults hospitalized due to advanced cancer and assigned to either intervention or control group by simple randomization. Data were collected with descriptive information form, Palliative Performance Scale, Patient Dignity Inventory (PDI), Prolonged Grief Disorder Scale-Patient Form (PGDS-PF), and Meaning in Life Questionnaire (MIL) on admission, at the 4th and 8th weeks. The intervention group received eight sessions of logotherapy. The control group received routine care. RESULTS: The mean scores of PGDS-PF (p = 0.01), PDI (p = 0.01), and searched meaning subdimension of MIL (MIL-SM) (p = 0.11) decreased in the intervention group compared to controls, both at the 4th and 8th week evaluation. The mean score of the present meaning subdimension of MIL (MIL-PM) (p = 0.02) increased at the 4th week evaluation but decreased at a non-statistically significant level at the 8th week. The mean scores of PGDS-PF and PDI increased in the control group while MIL-PM and MIL-SM decreased, both at the 4th and 8th week evaluation. CONCLUSIONS: Logotherapy was found effective in decreasing the sorrow and dignity-related distress of palliative care patients, while increasing finding meaning in life. Logotherapy is recommended to be used by palliative care professionals to empower patients. TRIAL REGISTRATION: Clinicaltrials registration number and date: NCT05129059, 19/01/2021.
Sujet(s)
Assistance , Chagrin , Tumeurs , Soins palliatifs , Humains , Soins palliatifs/méthodes , Soins palliatifs/psychologie , Mâle , Femelle , Adulte d'âge moyen , Assistance/méthodes , Tumeurs/thérapie , Tumeurs/psychologie , Sujet âgé , Adulte , Enquêtes et questionnaires , Adaptation psychologique , Personne humaineRÉSUMÉ
The authors want to invite the integrated care community to reflect with us on an evolutionary shift in how we approach matters of justice and equity: from a diversity, equity, and inclusion (DEI) framework to a perspective that centers the relational concepts of belonging, dignity, and justice (BDJ) for a more just world (Davis, 2021). Our desire to reflect, question, and pivot is inspired by the Ecocycle Planning Model-which I (Deepu George) used to critically frame the Collaborative Family Healthcare Association's (CFHA) history in Part I of the article (George, 2023a) and creatively anticipate our future in Part II (George & Khatri, 2024). In this article, the authors want to focus on the nodes of maturity and creative destruction, as well as the idea of the rigidity trap-to examine our collective energies around the idea of DEI. With CFHA's 30th anniversary upon us, we pause and reflect on not only the benefits of DEI efforts heretofore, but also the pitfalls, to avoid the rigidity trap, which is likely to occur when we embrace tenets of an idea that may no longer serve the values we once aspired to or fail to evolve in favor of the familiar. Considering critiques of the limitations of DEI work in practice and literature, the authors believe a BDJ approach will better inform our growth moving forward. Therefore, the authors want to reflect, honor, and build upon the impact and gains from DEI and adapt them to better serve the needs of all-especially the historically marginalized and underrepresented voices. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
Sujet(s)
Diversité culturelle , Justice sociale , Humains , Respect , Inclusion sociale , Personne humaine , Équité en santé/tendances , Équité en santé/normesRÉSUMÉ
Objective: The current study aimed to develop and validate of human dignity questionnaire in nursing care. Methods: The present research is a sequential exploratory mixed method study. The questionnaire was developed and validated in three phases: (1) the concept of human dignity was defined through conventional content analysis qualitative approach, (2) early items of questionnaire was generated according to findings of the first phase, (3) validation of the questionnaire was evaluated using face, content and construct validity as well as reliability. The study was conducted with the participation of 13 nurses in the qualitative section and 203 nurses in the quantitative section in teaching hospitals affiliated to Jahrom University of Medical Sciences (Iran). Results: In the qualitative section, the definition and dimensions of the concept of human dignity in nursing care were discovered. In the quantitative section, the initial pool of items for the questionnaire of human dignity in nursing care was formed using the results of the qualitative section of the study and review of texts and related questionnaires. In factor analysis, four subscales including: respectful communication, equality of patient human value, preservation of privacy and patient-centered care were extracted by Eigen value above one. Internal consistency and stability of the questionnaire were calculated as 0.85 and 0.80, respectively, indicating an excellent reliability. Conclusion: The 20-item developed questionnaire is valid and reliable for measurement of human dignity questionnaire in nursing cares.
Sujet(s)
Personne humaine , Humains , Enquêtes et questionnaires , Reproductibilité des résultats , Femelle , Adulte , Mâle , Iran , Soins infirmiers , Soins centrés sur le patient , Adulte d'âge moyen , Respect , Analyse statistique factorielle , Personnel infirmier hospitalier/psychologie , Hôpitaux d'enseignement , Jeune adulteSujet(s)
, Troubles mentaux , Humains , /méthodes , Troubles mentaux/thérapie , Services de santé mentale , Personne humaine , RespectRÉSUMÉ
BACKGROUND AND OBJECTIVES: Conversations about dignity are fundamental to person-centered care in pediatrics, yet practical language strategies to promote and support dignity remain understudied. To address this gap, we aimed to identify and characterize language used by pediatric oncologists to recognize and affirm dignity across advancing illness. METHODS: In this longitudinal prospective study, we audio-recorded serial disease reevaluation encounters between pediatric oncologists, children with cancer, and families across 24 months or until the child's death. Using a hybrid deductive-inductive qualitative approach, we defined dignity language a priori on the basis of existing descriptions of dignity in the literature and then conducted a content analysis to refine the definition specific to pediatric cancer care before coding serial medical encounters. Thematic frequencies were reported by using descriptive statistics. RESULTS: A total of 91 discussions at timepoints of disease progression were audio-recorded for 36 patients and their families. No dignity language was identified in nearly half (45%) of "bad news" encounters, and the time spent by the oncologist engaging in dignity language represented a minority (<7%) of overall recorded dialogue. Within coded dialogue, we characterized 3 key themes upholding dignity language (empowerment, autonomy, respect). CONCLUSIONS: Opportunities exist to improve dignity communication in childhood cancer, and the authors propose a conceptual model ("Lend an EAR") to guide dignity-based communication in pediatric cancer. Future research should emphasize patient and parent perspectives on language to support dignity for children with advanced cancer, with stakeholder-driven refinement of the Lend an EAR model before integration and testing in communication skills training programs.
Sujet(s)
Tumeurs , Humains , Tumeurs/psychologie , Tumeurs/thérapie , Enfant , Études prospectives , Femelle , Mâle , Études longitudinales , Relations médecin-patient , Enfant d'âge préscolaire , Personne humaine , Langage , Adolescent , Respect , Oncologie médicale , CommunicationRÉSUMÉ
PURPOSE: To explore whether and how eHealth solutions support the dignity of healthcare professionals and patients in palliative care contexts. METHOD: This qualitative study used phenomenographic analysis involving four focus group interviews, with healthcare professionals who provide palliative care to older people. RESULTS: Analysis revealed four categories of views on working with eHealth in hierarchical order: Safeguarding the patient by documenting-eHealth is a grain of support, Treated as less worthy by authorities-double standards, Distrust in the eHealth solution-when the "solution" presents a danger; and Patient first-personal contact with patients endows more dignity than eHealth. The ability to have up-to-date patient information was considered crucial when caring for vulnerable, dying patients. eHealth solutions were perceived as essential technological support, but also as unreliable, even dangerous, lacking patient information, with critical information potentially missing or overlooked. This caused distrust in eHealth, introduced unease at work, and challenged healthcare professionals' identities, leading to embodied discomfort and feeling of a lack of dignity. CONCLUSION: The healthcare professionals perceived work with eHealth solutions as challenging their sense of dignity, and therefore affecting their ability to provide dignified care for the patients. However, healthcare professionals managed to provide dignified palliative care by focusing on patient first.
Sujet(s)
Attitude du personnel soignant , Groupes de discussion , Personnel de santé , Soins palliatifs , Personne humaine , Recherche qualitative , Respect , Télémédecine , Humains , Soins palliatifs/psychologie , Femelle , Mâle , Sujet âgé , Personnel de santé/psychologie , Adulte d'âge moyen , Adulte , ConfianceRÉSUMÉ
The aim of this discussion paper is to explore factors and contexts that influence how nurses might conceptualise and assign personhood for people with altered consciousness, cognition and behaviours. While a biomedical framing is founded upon a dichotomy between the body and self, such that the body can be subjected to a medical and objectifying gaze, relational theories of self, multiculturalism and technological advances for life-sustaining interventions present new dilemmas which necessitate discussion about what constitutes personhood. The concept of personhood is dynamic and evolving: where historical constructs of rationality, agency, autonomy and a conscious mind once formed the basis for personhood, these ideas have been challenged to encompass embodied, relational, social and cultural paradigms of selfhood. Themes in this discussion include: the right to personhood, mind-body dualism versus the embodied self; personhood as consciousness, rationality and narratives of self; social relational contexts of personhood and cultural contexts of personhood. Patricia Benner's and Christine Tanner's clinical judgement model is then applied to consider the implications for nursing care that seeks to reflexively incorporate personhood. Nurse clinicians are able to move between conceptions of personhood and act to support the body, as well as presumed autonomy and relational, social and cultural personhood. In doing so, they use analytical, intuitive and narrative reasoning which prioritises autonomous constructions of self. They also incorporate relational and social contexts of the person receiving care within the possibilities of technological advances and constraints of contextual resources.
Sujet(s)
Cognition , Personne humaine , Humains , Conscience , Soins infirmiers/psychologie , Soins infirmiers/méthodes , Soins infirmiers/tendancesRÉSUMÉ
Discussions regarding personhood and dementia care are often based on practices of recognition; on notions of being-or not being- 'one of us'. This article provides a short overview of personhood as articulated in dementia care, especially in the assemblage of practices known as 'person-centred care' (PCC), and in post-human approaches that developed following the critique of PCC. This article posits an alternative framework, based on a rereading of the concept of alienation, that we want to call 'alienation-centred care'. It considers the extent to which dynamic prosthetic networks can be adapted to the lives of people with dementia, rather than only examining the individual's reactivity to dementia interventions that define traditional approaches. It further urges us to understand the multiple origins of alienating states. Conclusions explore how this framework might address some of the limitations identified in both humanist and post-human approaches to personhood and dementia.
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Démence , Soins centrés sur le patient , Personne humaine , Humains , Démence/psychologie , Démence/thérapieRÉSUMÉ
Human rights may feel self-apparent to us, but less than 80 years ago, one of the most advanced countries at the time acted based on an utterly contrary ideology. The view of social Darwinism that abandoned the idea of the intrinsic value of human lives instead argued that oppression of the inferior is not only inevitable but desirable. One of the many catastrophic outcomes is the medical data obtained from inhuman experiments at concentration camps. Ethical uncertainty over whether the resulting insights should be a part of the medical literature provides a chance to consider the seemingly irreplaceable social construct of human dignity. Would any medical benefit justify the utilization of this illicit data? Would utilization even qualify as an insult to the dignity of the exploited subjects, or is this a question about intersubjective meaning? This work discusses the wisdom in blind adherence to human dignity, the possibility of retrospective insults, moral complicity, contrary viewpoints, and possible resolutions.
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Droits de l'homme , National socialisme , Humains , Philosophie médicale , Personne humaine , Expérimentation humaine/éthique , Expérimentation humaine/histoire , Sens moralRÉSUMÉ
Neuropalliative care developed to address the needs of patients living with life-limiting neurologic disease. One critical consideration is that disease-related changes to cognition, communication, and function challenge illness experiences and care practices. We conducted an ethnography to understand neuropalliative care as a phenomenon; how it was experienced, provided, conceptualized. Personhood served as our conceptual framework; with its long philosophical history and important place in nursing theory, we examined the extent to which it captured neuropalliative experiences and concerns. Personhood contextualized complex losses, aligning the impact of functional and relational changes. Cognition, communication, and functional alterations stretched conceptions of personhood, insinuating it can be relational, fluid, adaptive. Although normative conceptions of personhood guided research and decision-making, ethical considerations suggested personhood could be transformed, remade. We consider the implications of our findings through three themes. First, we examine how literature on illness experience fails to integrate the realities of people living with and dying from neurologic disease; we counter this by interrogating the concept of experience. Second, we turn to Ricoeur's work on recognition to illuminate relational conceptions of personhood to inform care practices. Finally, we reflect on how personhood can bridge the gap left by functional changes, enhance relational engagement, and promote dignity at the end of life.
Sujet(s)
Anthropologie culturelle , Personne humaine , Humains , Anthropologie culturelle/méthodes , Maladies du système nerveux/psychologie , Maladies du système nerveux/thérapieRÉSUMÉ
BACKGROUND: Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services. DESIGN: Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis. RESULTS: Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare. DISCUSSION: Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity. CONCLUSION: Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.
Sujet(s)
Soins palliatifs , Recherche qualitative , Humains , Mâle , Femelle , Soins palliatifs/psychologie , Soins palliatifs/méthodes , Soins palliatifs/normes , Adulte d'âge moyen , Sujet âgé , Liban , Adulte , Famille/psychologie , Soutien social , Sujet âgé de 80 ans ou plus , Respect , Personne humaine , Entretiens comme sujet/méthodes , Soutien familialRÉSUMÉ
BACKGROUND: Globally, infertility is known as a major problem which can ruin a couple's relationship. In recent years, many studies have addressed the causes of infertility, the outcomes of treatments for infertility, and the effects of infertility on couples' mental health; however, the concept of dignity of women living with infertility has never been examined in depth. OBJECTIVE: This study aimed to explore the dignity of women living with infertility in Iran. DESIGN: This qualitative research was conducted via conventional content analysis approach. METHODS: This qualitative study was conducted in Iran from February to December 2022. In this research, the data were collected through face-to-face semi-structured in-depth interviews with 23 women living with infertility selected via purposive sampling. The interviews were continued until reaching the data saturation point. Data analysis was performed simultaneously with data collection. The interviews were recorded, transcribed, and analyzed through Graneheim and Lundman style content analysis, with data management done using the MAXQDA software. To achieve the accuracy and validity of the study, the four-dimension criteria by Lincoln and Guba, namely credibility, dependability, conformability, and transformability, were considered and used. RESULTS: Analysis of the qualitative data yielded three themes and eight subthemes. The three main themes were (1) overcoming identity crises (overcoming dysthymia, coping with unaccomplished motherhood), (2) respect for personal identity (respect for confidentiality; respect for beliefs, values, and attitudes; avoidance of stigma and pity), and (3) compassion-focused therapy (sympathizing, mental and spiritual support, and enhancement of life skills). CONCLUSION: Dignity of women living with infertility encompasses overcoming identity crises, respect for personal identity, and compassion therapy. The policymakers and administrators in the healthcare system can use the findings of this study to create a proper clinical environment toward preserving the dignity of women living with infertility.
Sujet(s)
Infertilité féminine , Recherche qualitative , Humains , Femelle , Iran , Adulte , Infertilité féminine/psychologie , Infertilité féminine/thérapie , Respect , Personne humaine , Entretiens comme sujet , Infertilité/psychologie , Infertilité/thérapie , PerceptionRÉSUMÉ
When an abortion is performed, someone dies. Are we killing a human person? Widespread disagreement exists. However, it is not necessary to establish personhood in order to establish the wrongness of abortion: a substantial chance of personhood is enough. We defend The Do Not Risk Homicide Argument: abortions are wrong after 10 weeks gestation because they substantially and unjustifiably risk homicide, the unjust killing of a human person. Why 10 weeks? Because the cumulative evidence establishes a substantial chance (a more than one in five chance) that preborn human beings are persons after 10 weeks (if not before then). We submit evidence from our bad track record, widespread disagreement about personhood (after 10 weeks gestation), problems with theories of personhood, the similarity between preborn human beings and premature newborns, miscalculations of gestational age, and the common intuitive responses of women to their pregnancies and miscarriages. Our argument is cogent because it bypasses the stalemate over preborn personhood and rests on common ground rather than contentious metaphysics. It also strongly suggests that society must do more to protect preborn human beings. We briefly discuss its practical implications for fetal pain relief, social policy, and abortion law.
Sujet(s)
Avortement provoqué , Homicide , Personne humaine , Humains , Grossesse , Femelle , Avortement provoqué/éthique , Âge gestationnel , Philosophie médicale , Premier trimestre de grossesseRÉSUMÉ
PURPOSE OF REVIEW: Over the last 20 years, dignity and dignity-conserving care have become the center of investigation, in many areas of medicine, including palliative care, oncology, neurology, geriatrics, and psychiatry. We summarized peer-reviewed literature and examined the definition, conceptualization of dignity, potential problems, and suggested interventions. RECENT FINDINGS: We performed a review utilizing several databases, including the most relevant studies in full journal articles, investigating the problems of dignity in medicine. It emerged that dignity is a multifactorial construct and that dignity-preserving care should be at the center of the health organization. Dignity should be also regularly assessed through the tools currently available in clinical practice. Among dignity intervention, besides dignity models of care, dignity intervention, such as dignity therapy (DT), life review and reminiscence therapy, have a role in maintaining both the extrinsic (preserved when health care professionals treat the patient with respect, meeting physical and emotional needs, honors the patient's wishes, and makes attempts to maintain privacy and confidentiality) and intrinsic dignity (preserved when the patient has appropriate self-esteem, is able to exercise autonomy and has a sense of hope and meaning). Unified trends across diverse medical contexts highlight the need for a holistic, patient-centered approach in healthcare settings. Challenges compromising dignity are pervasive, underscoring the importance of interventions and systematic efforts to address these issues. Future research and interventions should prioritize the multifaceted nature of dignity, striving to create healthcare environments that foster compassion, respect, and dignity across all medical settings.
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Personne humaine , Humains , Respect , Psychothérapie/méthodesRÉSUMÉ
OBJECTIVES: Using the concept of relational solidarity, we examine how autonomy, equality, dignity, and personhood are practiced in the care of people living with dementia at home in urban India. METHODS: Video interviews with 19 family carers and 25 health providers conducted in English, Hindi, and Kannada in Bengaluru between March and July 2022. Data were translated into English and thematically analyzed. RESULTS: Family carers and providers unanimously agreed that people with dementia should be respected and cared for. Concurrently, they perceived people with dementia as being "like a kid" and used the analogy of a parent-child relationship to understand their care responsibilities. This analogy informed how ethical principles such as personhood and equality were reframed in the relationships between family carers and people with dementia, as well as how carers and providers maintained the safety but undermined the autonomy of people with dementia through restricting their movements inside and outside the home. DISCUSSION: There can be relational solidarity in dementia care at home in urban India but also contradictions in the interpretations and applications of the ethical principles of autonomy, equality, dignity, and personhood. As such, a more organic, grassroots model of ethical practice is needed to frame care and provide material support to families in India.
Sujet(s)
Aidants , Démence , Autonomie personnelle , Humains , Inde , Démence/thérapie , Démence/psychologie , Démence/soins infirmiers , Aidants/éthique , Aidants/psychologie , Mâle , Femelle , Personne humaine , Adulte d'âge moyen , Population urbaine , Sujet âgé , Respect , AdulteRÉSUMÉ
BACKGROUND: The loss of perceived dignity is an existential source of human suffering, described in patients with cancer and chronic diseases and hospitalized patients but rarely explored among patients with rheumatic diseases (RMDs). We recently observed that distress related to perceived dignity (DPD) was present in 26.9% of Mexican patients with different RMDs. The study aimed to investigate the factors associated with DPD. METHODS: This cross-sectional study was performed between February and September 2022. Consecutive patients with RMDs completed patient-reported outcomes (to assess mental health, disease activity/severity, disability, fatigue, quality of life [QoL], satisfaction with medical care, and family function) and had a rheumatic evaluation to assess disease activity status and comorbidity. Sociodemographic variables and disease-related and treatment-related variables were retrieved with standardized formats. DPD was defined based on the Patient Dignity Inventory score. Multivariate regression analysis was used. RESULTS: Four hundred patients were included and were representative of outpatients with RMDs, while 7.5% each were inpatients and patients from the emergency care unit. There were 107 patients (26.8%) with DPD. Past mental health-related comorbidity (Odds Ratio [OR]: 4.680 [95% Confidence Interval [CI]: 1.906-11.491]), the number of immunosuppressive drugs/patient (OR: 1.683 [95% CI: 1.015-2.791]), the physical health dimension score of the World Health Organization Quality of Life-Brief questionnaire (WHOQOL-BREF) (OR: 0.937 [95% CI: 0.907-0.967]), and the emotional health dimension score of the WHOQOL-BREF (OR: 0.895 [95% CI: 0.863-0.928]) were associated with DPD. CONCLUSIONS: DPD was present in a substantial proportion of patients with RMDs and was associated with mental health-related comorbidity, disease activity/severity-related variables, and the patient QoL.