The gift of here and now at the end of life: Mindful living and dignified dying among Asian terminally ill patients.

OBJECTIVES: In Chochinov's dignity model, living in the here and now (mindful living) is explicitly stated as a dignity-conserving practice. However, what facilitates mindful living remain unclear. This study aims to investigate the mechanisms of mindful living among Asian terminally ill patients. METHODS: This interpretative phenomenological analysis comprised patients aged 50 and above with a prognosis of less than 12 months. Fifty interview transcripts from a larger Family Dignity Intervention study conducted in Singapore were used for the analysis. RESULTS: Findings revealed 12 themes that were organized into 3 axioms of mindful living for dignified dying: (a) purposive self-awareness, (b) family-centered attention, and (c) attitudes of mortality acceptance. Through purposive self-awareness, patients introspected their lived experience with illness and anticipated death to find resilience and contentment. Patients' conscious family-centered attention revolved around their relationships, achievements, and legacy within the family, leading to a deepened sense of interconnectedness with self and beloved others at life's end. Lastly, patients adopted nonjudgmental attitudes of mortality acceptance as they made necessary arrangements in preparation for their death, allowing them to treasure every living moment and obtain a closure in life. An empirical model of mindful living for dignified dying was developed based on these emerging themes, illustrating the interweaving of intention, attention, and attitude for facilitating meaningful living in the face of mortality. SIGNIFICANCE OF RESULTS: Mindful living is a dignity-preserving practice, which helps terminally ill patients to find tranquility in each present moment despite their impending death. The identified mechanisms of mindful living lay important groundwork for a new understanding and possible directions for culture-specific, mindfulness-based, family-centered interventions suited to terminally ill patients in the Asian context.

Recovery needs and psychosocial rehabilitation trajectory of stroke survivors (PReTS): A qualitative systematic review of systematic reviews.

OBJECTIVE: Stroke has a major impact on a person's life. While much research exists on stroke prevention and treatment, explorations into psychosocial recovery needs are lacking. This review critically consolidates the challenges and needs of stroke survivors and develops a trajectory that encapsulates their journey from illness to recovery. DATA SOURCES: Six major databases were searched, including Academic Search Premier, CINAHL, Global Health, Medline, PsycArticles, and PsycINFO. METHODS: This review adhered to the PRISMA guidelines and employed the PICo (population, phenomena of interest, context) framework to screen for relevant qualitative reviews published between 1 January 2010 and 31 August 2023. Following full-text screening and the assessment of methodological quality using a modified version of the Assessment of Multiple Systematic Reviews scale, a total of 17 reviews were included for thematic synthesis. RESULTS: Included reviews referenced 400 qualitative primary studies involving more than 5623 stroke survivors. Data synthesis revealed 18 themes that were further organized into six conceptual categories: (1) The unfamiliar body, (2) compassionate healthcare system, (3) holistic rehabilitation, (4) intrapersonal strength, (5) interpersonal relations, and (6) thriving forward to form the psychosocial rehabilitation trajectory of stroke survivor (PReTS) model. The model recognizes the losses that can occur after a stroke and emphasizes the essentiality of addressing psycho-socio-emotional and spiritual needs alongside physical impairments. CONCLUSION: The PReTS model is the first to highlight stroke survivors' losses, recovery journeys, and psychosocial needs. The conceptualization serves to inform and advance stroke rehabilitation practices with holistic and wellness recovery research.

Living losses in stroke caregiving: A qualitative systematic review of systematic reviews on psycho-socio-emotional challenges and coping mechanisms.

BACKGROUND: Stroke compromises the quality of life and wellbeing of stroke survivors and families as a whole. The unexpected caregiving responsibilities often cause psychological distress, overwhelming emotions, living losses and grief, and relational conflicts with stroke survivors. Despite the increasing research to better understand their needs, empirically sound and holistic psychosocial interventions for stroke caregivers are lacking. AIMS: This study aims to consolidate psycho-socio-emotional needs and challenges in the existing systematic reviews and offer potential directions for psychosocial interventions to better support caregivers at a psycho-socio-emotional level. METHODS: This systematic review adhered to the PRISMA guideline and employed the PICo (population, phenomena of interest, context) framework to screen for relevant systematic reviews for analysis. Six major databases were searched, including Academic Search Premier, CINAHL, Global Health, Medline, PsycArticles, and PsycInfo between 2010 and 2020. Ten systematic reviews were selected for full-text analysis using thematic synthesis. SUMMARY OF REVIEW: Data synthesis revealed eight themes with sixteen sub-themes, all together organized into two main theme categories. The psycho-socio-emotional challenges included disruptions to (1) psychological homeostasis, (2) role equilibrium, (3) familial connection, and (4) caregiving empowerment. The psycho-socio-emotional coping mechanisms, which could be adopted to buffer against the identified challenges, involved (1) recalibration of normality and balance, (2) psychosocial support and caregiver relief, (3) relational reorientation and dyadic coping, and (4) institutional holistic care and support. CONCLUSION: The findings accentuate the importance of addressing living losses and grief emerging from the caregiving journey, as well as facilitating meaning reconstruction to safeguard caregivers' wellbeing. Clinical implications and future research directions are discussed.

Reciprocal Dynamics of Dignity in End-of-Life Care: A Multiperspective Systematic Review of Qualitative and Mixed Methods Research.

BACKGROUND: Preserving terminally ill patients' dignity and well-being through dignified and holistic care has become the overarching goal in palliative care services. However, dignity is a multifaceted concept with a wide range of interpretations under different cultural contexts. AIM: The aim of this review is to understand the variations in subjective interpretations and constitutions of dignity in palliative or end-of-life care via an integrative worldview. DESIGN: This systematic review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guideline and used SPIDER tool to screen for appropriate and relevant articles for analysis. DATA SOURCES: Four major databases were searched including CINAHL, ERIC, Medline, and PsycARTICLES between 2009 and 2018. Forty-eight qualitative studies that examined dignity from the perspectives of patients, family caregivers, and health-care professionals were selected for full text data analysis using thematic synthesis. RESULTS: Analysis of the various concepts of dignity revealed 18 themes that were further categorized into 7 conceptual categories: (1) self-determination, (2) existential liberty, (3) relational connectedness, (4) caregiving revitalization, (5) mindful humanity, (6) patient-family care, and (7) sustainable culture. These 7 categories span across individual, familial, and institutional dimensions, forming a new Dynamic Reciprocity of Dignity model. CONCLUSIONS: The Dynamic Reciprocity of Dignity model highlights the importance of adopting a systemic lens to address dignity-related needs and concerns at the end of life, while providing insights on how compassionate care and self-compassion can serve as the foundation of dignified care, which in turn serve as a buffer against patients' existential suffering as well as caregivers' burnout and fatigue. Recommendations for clinical practice and future research directions are discussed.

A novel Family Dignity Intervention (FDI) for enhancing and informing holistic palliative care in Asia: study protocol for a randomized controlled trial.

BACKGROUND: The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore. METHODS/DESIGN: An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method. DISCUSSION: To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT03200730 . Registered on 26 June 2017.