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.

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.

The systemic challenges of non-palliative care professionals caring for end-of-life patients: A lived experience study.

OBJECTIVES: The aims of this study are to identify the challenges faced by non-palliative care professionals (NPCPs) in caring for end-of-life patients; determine how these challenges interact with and influence each other systemically; and advance the theories and practices for supporting NPCPs in the provision of quality end-of-life care beyond the boundaries of palliative medicine. METHODS: A constructivist phenomenological research design with an Interpretive-Systemic Framework of inquiry was adopted. Thirty-five physicians, 35 nurses, and 35 Medical Social Workers who play critical roles in caring for end-of-life patients and belonging to the 9 major medical disciplines of Cardiology, Geriatric, Intensive Care Medicine, Internal Medicine, Nephrology, Neurology, Oncology, Respiratory Medicine, and Surgery were recruited through purposive snowball sampling from 3 major public hospitals. RESULTS: Framework analysis revealed 5 themes and 17 subthemes that illuminate the individual, relational, cultural, institutional, and structural challenges that NPCPs faced in rendering end-of-life care. These challenges influence each other within the health-care ecosystem, serving to perpetuate or heighten care obstacles. SIGNIFICANCE OF RESULTS: This is the first known study exploring the systemic challenges of NPCPs spanning 9 major medical disciplines and encompassing 3 professional stakeholders responsible for the care for end-of-life patients, thus ensuring perspective inclusivity across the health-care system. Recommendations that consider the complexity of the interactions between these systemic challenges are presented in detail.

Acceptability and feasibility of a pilot randomized controlled trial of Narrative e-Writing Intervention (NeW-I) for parent-caregivers of children with chronic life-threatening illnesses in Singapore.

BACKGROUND: Narrative e-Writing Intervention (NeW-I) is a novel psycho-socio-spiritual intervention which aims to bridge gaps in paediatric palliative care by providing anticipatory grief support to parent-caregivers who are looking after their child with a chronic life-threatening illness in Singapore. This is done via a therapist-facilitated smartphone app that focuses on strengths and meaning derived from parents' caregiving journey. NeW-I is empirically informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by anticipatory grief interventions literature for improving the holistic well-being for parent-caregivers of seriously ill children. NeW-I is implemented in Singapore as an open-label two-armed randomized controlled trial comprising an intervention and control group. METHODS: This study examined the acceptability (via analysis of participants' post-intervention qualitative feedback and responses to a post-intervention evaluation survey) and feasibility (via records and memos of therapists' experience of delivering the intervention) of NeW-I among 26 intervention participants drawn from the larger trial. RESULTS: Framework analysis of participants' post-intervention feedback revealed four themes, namely: (i) Meaningful opportunity for reflection, (ii) Congruity with parent-caregivers' needs, (iii) Compatibility of online narrative writing and (iv) Sustainability and enhancement recommendations. The post-intervention evaluation survey showed that participants were overall satisfied with their NeW-I experience with a large number of participants acknowledging that NeW-I had improved their spiritual well-being, hopefulness about the future and perception of social support that was available to them, as well as lessened their feelings of sadness and depression, caregiver burden and fear and anxiety about their child's illness. The research team found it feasible to deliver the intervention in the current setting. CONCLUSION: NeW-I is an innovative e-health tool that could immeasurably value-add to paediatric palliative care services for Asian families in Singapore and around the world. TRIAL REGISTRATION: ClinicalTrials.gov, ID: NCT03684382 , Verified: September 2018.

Resolving anticipatory grief and enhancing dignity at the end-of life: A systematic review of palliative interventions.

Anticipatory grief is the experience of grief symptomatology prior to loss. This study is a systematic review of empirical interventions or interventional components that were observed to lessen or adaptively direct the experience of anticipatory grief for patients at the end of life and their family members. A search of 5 major databases found 13,718 articles, of which 10 high-quality randomized controlled trials were included for final review. Lebow's "adaptational tasks of anticipatory mourning" was employed as a working model on the efficacy of the interventions. The interventions exhibited some positive outcomes but none addressed anticipatory grief directly. Recommendations for future research are discussed.

Blessings or burdens: an Interpretative Phenomenological Analysis (IPA) study on the motivations and their impact on end-of-life caregiving among Asian family caregivers.

BACKGROUND: While the impact of family caregiving has been well-documented, many of such studies center on investigating external factors such as socioeconomic status, accessibility to resources and availability of social support as the primary causation of caregiver wellbeing outcomes. This paper explores the motivations that drive family caregivers in supporting their family members at the end-of-life, and critically examines how internal appraisal processes of such motivations can both positively and negatively impact their wellbeing. METHODS: This study adopted an interpretative phenomenological analysis (IPA) to investigate the motivations and internal appraisal processes of Asian family caregivers in Singapore who were tending to a dying family member. Qualitative dyadic interview data (N = 20) was drawn from a larger Randomized Controlled Trial for a novel Family Dignity Intervention (FDI) for palliative care patients and their families. The sampling population consisted of participants aged 21 and above who were identified to be the primary caregivers of older palliative care patients with a prognosis of less than 12 months. Data collection was conducted in the homes of patients and family caregivers. RESULTS: Findings revealed six themes that could either nurture or diminish caregiver wellbeing: 1) Honoring Fidelity (caregivers were motivated to commit to their caregiving roles in order to avoid regret), 2) Alleviating Suffering (caregivers were motivated to relieve their family member's pain), 3) Enduring Attachment (caregivers were motivated to spend time together with their family member), 4) Preserving Gratitude (caregivers were motivated to express their appreciation to their family member by caregiving), 5) Navigating Change (caregivers were motivated to adapt accordingly to changes in the illness trajectory) and 6) Reconciling with Mortality (caregivers were motivated to respond accordingly to their family member's prognosis). The final theme of the Wellbeing Determinant is posited as an indication of self-determination, and is conjectured to influence how caregiving motivations are appraised by the caregiver. CONCLUSION: Fulfilling and enhancing one's sense of self-determination appears central to infusing one's caregiving motivations with positive meaning, and consequently nurturing one's wellbeing in the end-of-life caregiving journey. These findings are discussed with recommendations for healthcare professionals working with family caregivers of palliative care patients.

Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore.

BACKGROUND: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child's chronic life-threatening illness, there is no such study within the Asian context. METHODS: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018. RESULTS: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants' lived experience of their child's chronic life-threatening illness and death, starting from the diagnosis of their child's chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child's death and the losses which accompanied the death (Theme 3) and participants' experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or 'rituals' that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7). CONCLUSION: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.

Lived experience of a child's chronic illness and death: A qualitative systematic review of the parental bereavement trajectory.

To understand the lived experience of parents who have lost their child to a chronic life-limiting condition, six major databases were searched by adhering to the Preferred Reporting Items for Systematic Review and Meta-Analyses guidelines. Articles were screened for appropriateness using the Sample, Phenomenon of Interest, Design, Evaluation, Research type tool, and relevant qualitative studies were selected for full-text data analysis using Thematic Synthesis. Findings were categorized into 13 themes that were further organized into a four-phase trajectory of parental bereavement experience of child loss, namely: Liminal Margin, Holding Space, Navigating Losses, and Reconstructing Lives. The findings are discussed in the light of existing literature with practical recommendations for enhancing parental bereavement support services.

Slow art plus: developing and piloting a single session art gallery-based intervention for mental health promotion via a mixed method waitlist randomized control trial.

Introduction: The current study builds on the expertise of National Gallery Singapore and Nanyang Technological University Singapore (NTU) in developing and piloting an enhanced version of the Slow Art program, namely "Slow Art Plus" for mental health promotion. Methods: A single-site, open-label, waitlist Randomized Control Trial (RCT) design comprising of a treatment group and waitlist control group was adopted (ClinicalTrials.gov ID: NCT05803226). Participants (N = 196) completed three online questionnaires at three timepoints: baseline [T1], immediately post-intervention/s baseline [T2], post-intervention follow-up/immediately post-intervention [T3]. Qualitative focus groups were conducted to evaluate program acceptability. Results: A mixed model ANOVA was performed to understand intervention effectiveness between the immediate intervention group and waitlist control group. The analyses revealed a significant interaction effect where intervention group participants reported an improvement in spiritual well-being (p = 0.001), describing their thoughts and experiences (p = 0.02), and nonreacting to inner experiences (p = 0.01) immediately after Slow Art Plus as compared to the control group. Additionally, one-way repeated measure ANOVAs were conducted for the intervention group to evaluate maintenance effects of the intervention. The analyses indicated significant improvements in perceived stress (p < 0.001), mindfulness (p < 0.001) as well as multiple mindfulness subscales, active engagement with the world (p = 0.003), and self-compassion (p = 0.02) 1 day after the completion of Slow Art Plus. Results from framework analysis of focus group data revealed a total of two themes (1: Experiences of Slow Art Plus, 2: Insights to Effective Implementation) and six subthemes (1a: Peaceful relaxation, 1b: Self-Compassion, 1c: Widened Perspective, 2a: Valuable Components, 2b: Execution Requisites, 2c: Suggested Enhancements), providing valuable insights to the overall experience and implementation of the intervention. Discussion: Slow Art Plus represents a unique approach, offering a standardized, multimodal, single-session program that integrates mindfulness and self-compassion practices, as well as reflective and creative expressions with Southeast Asian art. It demonstrates potential in meeting the mental health needs of a wide range of individuals and could be readily incorporated into social prescribing initiatives for diverse populations.

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.

A Novel Mindful-Compassion Art-Based Therapy for Reducing Burnout and Promoting Resilience Among Healthcare Workers: Findings From a Waitlist Randomized Control Trial.

Protecting the mental health of healthcare workers is an urgent global public health priority. Healthcare workers, especially those immersed in palliative care, are prone to burnout due to the intense emotions associated with end-of-life caregiving. This study examines the efficacy of a novel, multimodal, and group-based Mindful-Compassion Art-based Therapy (MCAT) that integrates reflective self-awareness with creative emotional expression for protecting healthcare workers' mental health. A dual-arm open-label waitlist randomized controlled trial was conducted. A total of 56 healthcare workers were recruited from the largest homecare hospice in Singapore and randomized to the immediate-treatment condition of a standardized 6-week, 18-hours MCAT intervention (n=29), or the waitlist-control condition (n=27). Self-administered outcome measures on burnout, resilience, emotional regulation, self-compassion, death attitudes, and quality of life were collected at baseline, post-intervention/second-baseline at 6weeks, and follow-up/post-intervention at 12weeks. Results from mixed model ANOVAs reveal that treatment group participants experienced significant reduction in mental exhaustion, as well as significant improvements in overall emotional regulation, nonreactivity to intrusive thoughts, approach acceptance of death, and afterlife belief as compared to waitlist-control immediately after MCAT completion. Effect sizes of these impacts ranged from medium to large (η 2=0.65 to 0.170). Results from one-way ANOVAs further reveal that the treatment gains of reduced mental exhaustion and increased emotional regulation were maintained among treatment group participants at 12-weeks follow-up compared to baseline, with new benefits identified. These include increased ability to observe and describe one's experiences, elevated overall self-compassion, greater mindful awareness, enhanced common humanity, and better quality of life. Effect sizes of these impacts were large (η 2=0.128 to 0.298). These findings reflect the robust effectiveness and positive residual effects of MCAT for reducing burnout, building resilience, nurturing compassion, fostering collegial support, and promoting mental wellness among healthcare workers. The clinical model and applicability of MCAT in larger and more diverse caregiving contexts, such as family dementia care, are discussed. Clinical Trial Registration: ClinicalTrials.gov # NCT03440606, #NCT04548089.

'Food for Life and Palliation (FLiP)': a qualitative study for understanding and empowering dignity and identity for terminally ill patients in Asia.

OBJECTIVES: With 'eating' posited as Singapore's domestic pastime, food experiences for Singaporeans constitute national, social, ethnic and personal identities. However, though they form significant parts of Singaporean existence across the lifespan, studies and observations about food experiences for individuals at the end of life remain noticeably absent. Extant literature continues to focus on nutritional practice during illness and the active dying process, forgoing the rich lived experiences of food in the lives of patients and their families. The current work sought to qualitatively extricate through a constructivist phenomenological approach, the 'food voices' of Singaporean palliative care patients and their families. It also simultaneously aimed to assess the role of food in bolstering their subjective feelings of dignity and identity, while also considering resultant clinical implications. SETTING: Homes of patients within the Singaporean palliative care setting. PARTICIPANTS: A subset of qualitative data (n=25) in the form of dyadic interviews with terminally ill patients and a family caregiver was generated from a larger family dignity intervention study that explored the experience of living and dying among Asian palliative care patients and their families. RESULTS: Framework analysis with both inductive and deductive approaches informed by the a priori domain of food resulted in the generation of four major themes, each with three subthemes. These were organised into the Food for Life and Palliation model. They include: (1) feeding identity and familial bonds, (2) liminal subsistence in illness transition, (3) food becoming lineage, and (4) compassionate nourishment. CONCLUSIONS: Clinical implications are considered; including food-focused interventions that enhance dignity, promote meaning-making and facilitate legacy construction. Developmental suggestions are also directed at industry partners producing end-of-life nutrition products.

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.

Correction: A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial.

[This corrects the article DOI: 10.2196/17561.].

A Novel Narrative E-Writing Intervention for Parents of Children With Chronic Life-Threatening Illnesses: Protocol for a Pilot, Open-Label Randomized Controlled Trial.

BACKGROUND: A novel evidence-based Narrative e-Writing Intervention (NeW-I) has been developed and tested in Singapore to advance psychosociospiritual support for parents of children with chronic life-threatening illnesses. NeW-I is informed by an international systematic review and a Singapore-based qualitative inquiry on the lived experience of parental bereavement and supported by literature on anticipatory grief interventions for improving the holistic well-being of parent caregivers of seriously ill children. OBJECTIVE: This study's aim was to provide an accessible platform, NeW-I-which is a strengths- and meaning-focused and therapist-facilitated mobile app and web-based counseling platform-that aims to enhance quality of life, spiritual well-being, hope, and perceived social support and reduce depressive symptoms, caregiver burden, and risk of complicated grief among parents of children with chronic life-threatening illnesses. METHODS: The NeW-I therapist-facilitated web-based platform comprises a mobile app and a website (both of which have the same content and functionality). NeW-I has been implemented in Singapore as a pilot open-label randomized controlled trial comprising intervention and control groups. Both primary and secondary outcomes will be self-reported by participants through questionnaires. In collaboration with leading pediatric palliative care providers in Singapore, the trial aims to enroll 36 participants in each group (N=72), so that when allowing for 30% attrition at follow-up, the sample size will be adequate to detect a small effect size of 0.2 in the primary outcome measure, with 90% power and two-sided significance level of at least .05. The potential effectiveness of NeW-I and the accessibility and feasibility of implementing and delivering the intervention will be assessed. RESULTS: Funding support and institutional review board approval for this study have been secured. Data collection started in January 2019 and is ongoing. CONCLUSIONS: NeW-I aspires to enhance holistic pediatric palliative care services through a structured web-based counseling platform that is sensitive to the unique cultural needs of Asian family caregivers who are uncomfortable with expressing emotion even during times of loss and separation. The findings of this pilot study will inform the development of a full-scale NeW-I protocol and further research to evaluate the efficacy of NeW-I in Singapore and in other Asian communities around the world. TRIAL REGISTRATION: ClinicalTrials.gov NCT03684382; https://clinicaltrials.gov/ct2/show/NCT03684382. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/17561.

A novel mindful-compassion art therapy (MCAT) for reducing burnout and promoting resilience for end-of-life care professionals: a waitlist RCT protocol.

INTRODUCTION: End-of-life (EoL) care professionals are prone to burnout given the intense emotional nature of their work. Previous research supports the efficacy of art therapy in reducing work-related stress and enhancing emotional health among professional EoL caregivers. Integrating mindfulness meditation with art therapy and reflective awareness complementing emotional expression has immense potential for self-care and collegial support. Mindful-compassion art therapy (MCAT) is a novel, empirically informed, and highly structured intervention that aims to reduce work-related stress, cultivate resilience, and promote wellness. This study aims to assess the potential effectiveness of MCAT for supporting EoL care professionals in Singapore. METHODS: This is an open-label waitlist randomized controlled trial. Sixty EoL care professionals, including doctors, nurses, social workers, and personal care workers, are randomly allocated to one of two groups: (i) an intervention group that receives MCAT immediately and (ii) a waitlist-control group that receives MCAT after the intervention group completes treatment. Face-to-face self-administered outcome assessments are collected at three different time points-baseline (T1) for both groups, post-intervention (T2), and 6-week follow-up (T3) for intervention group-as well as pre-intervention (T2) and post-intervention (T3) for the waitlist-control group. The primary outcome measure is burnout, and secondary measures include emotional regulation, resilience, compassion, quality of life, and death attitudes. Between- and within-participant comparisons of outcomes are conducted, and the appropriate effect size estimates are reported. An acceptability and feasibility study is to be conducted by using a triangulation of qualitative data with framework analysis. DISCUSSION: The outcomes of this study will contribute to advancements in both theories and practices for supporting professional EoL caregivers around the world. It will also inform policy makers about the feasibility, acceptability, and effectiveness of delivering a multimodal psycho-socio-spiritual intervention within a community institutional setting. The study has received ethical approval from the institutional review board of Nanyang Technological University. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT03440606 . Retrospectively registered February 21, 2018.

Thematic analysis of spousal interaction patterns among Asian parents of children with chronic life-threatening illness.

OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship. PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore. RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation). CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.

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.