Conceptualising personhood in nursing care for people with altered consciousness, cognition and behaviours: A discussion paper.

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.

Women living with infertility in Iran: A qualitative content analysis of perception of dignity.

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.

Dilemmas of intervention: From person-centred to alienation-centred dementia care.

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.

Dignity enhanced through faith & family support in palliative care: a qualitative study.

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.

Relational Solidarity and Conflicting Ethics in Dementia Care in Urban India.

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.

Dignity in Medicine: Definition, Assessment and Therapy.

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.

Factors Associated With Distress Related to Perceived Dignity in Patients With Rheumatic Diseases.

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.

Autonomy and its relevance for the construction of personhood in dementia- a thematic synthesis.

BACKGROUND: This article examines the concept of autonomy in the context of person-centred dementia research and care, which is frequently being used but not clearly defined. Also, there is no clear conceptual relation between autonomy and personhood in this context. METHODS: Therefore, literature on person-centred dementia research and care was examined to answer the following question: How is the concept of autonomy discussed in person-centred dementia research and care literature? RESULTS: This analysis revealed heterogeneous perspectives on autonomy within the context of dementia. These were assigned to two different perspectives on personhood: one that links personhood to the existing cognitive abilities and the other one, that understands personhood relationally as the result of a socially constructed process. These results are discussed with regard to a nursing and care practice that could be considered as being deficit-oriented, but also with regard to the concept of social health in dementia. CONCLUSIONS: Derived from this analysis, there is a clear need for general conceptual sensitivity in this field. Also, an in-depth examination of the social constructionist approach to personhood in the context of dementia is warranted.

Ambiguous personhood: Paradoxes of social belonging in Danish nursing home care.

In oldest old age (generally considered to be from 85 years onwards), personhood is often called into question, impacting well-being as a result. Based on ethnographic fieldwork, this article examines the well-being of oldest old nursing home residents at the intersections of ageism, fraying personhood and fragile social belonging in Danish nursing home care. In Denmark personhood hinges on both independence and social belonging; or "fællesskab." We examine how these concepts are practiced in nursing home care. Taking its starting point in the distinction between the "inside world" of the nursing home and the "real world" outside, the article examines how processes of othering occur in nursing home care, imperilling resident personhood and opportunities for social belonging. We consider how oldest old residents navigate social belonging, finding it in turn life-sustaining and vexatious. We argue that tacit ageism permeates the nursing home, to the detriment of resident well-being, despite the best intentions of an aged care system that is structured to specifically maintain personhood.

'Robbed out of mind': Reflections on Alzheimer's and gendered subjectivity in select Indian literary narratives.

Neurological degeneration is a potent signifier molding older lives, divesting them of 'personhood' and making them a 'target of care'. This article delineates the depictions of Alzheimer's and its associated losses in select Indian literary narratives- Jalsobi: In the Shadow of Light (2018) and Girl in White Cotton (2019) and seeks to understand how 'ageing into disability' for older women has severe implications that marginalize their embodied existence, foisting a symbolic death. Through the fictional accounts, the article explores two primary threads of consideration - how the 'selfhood' gets eroded/reclaimed while experiencing cognitive impairment and how the shift from the patient-centric to the person-centric approach alters the relational care dynamics in the Indian context. It also attempts to situate the conception and representation of age-induced cognitive loss within the framework of critical disability studies, which understates the reductionist biomedical perspective and fosters an alternative, inclusive, and empathetic understanding of dysfunctionality.

Components of spirituality in older adults: A phenomenological study through interviews based on dignity therapy.

AIM: A key perspective in examining dignity, which is important for older adults, is spirituality. Therefore, this study aimed to identify the components of spirituality in older adults through interviews based on dignity therapy (DT). METHODOLOGICAL DESIGN AND JUSTIFICATION: Colaizzi's descriptive phenomenology was applied to understand experiences rooted in the life world of older adults from their own perspective. ETHICAL ISSUES AND APPROVAL: This study was approved by the ethical review committee of the author's university. All participants provided consent to participate. RESEARCH METHODS: Semi-structured interviews based on DT were conducted with 11 community-dwelling adults aged 65 years or older who were using some form of medical or social services. The interviews were transcribed, and the text was analysed based on Colaizzi's phenomenological method. RESULTS: Four themes were identified as components of spirituality in older adults: trauma, being silent about hard experiences, forming connections and taking on challenges and discovering one's own spirit. The participants felt a sense of helplessness and frustration as they dealt with traumatic events. Feelings of shame, guilt and/or resignation prevented them from talking about the distress they were experiencing, but they were able to move forward after receiving emotional support and having opportunities to share with others. These processes led to the discovery of a new self. STUDY LIMITATIONS: This study assessed the experiences of older adults in Japan and may therefore have been influenced by the social background and culture of Japan. Future research should target older adults from a variety of social backgrounds as well as those with specific health conditions. CONCLUSION: The findings suggest the importance of creating opportunities for healthcare professionals as well as family, friends and community members to help older adults reflect on their lives and talk about their accomplishments and unresolved issues. Doing so should help older adults maintain their dignity while remaining aware of their mortality.

Lessons for Ethics From the Kingdom of Fungi.

This article considers lessons about American (individual-centered) anthropocentric (human-centered) thinking that can be applied to how we confer dignity and moral status to beings other than humans. Interestingly, global bioethics might glean such lessons from fungi.