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.

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.

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.

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.