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1.
Palliat Support Care ; : 1-7, 2024 Jan 25.
Artigo em Inglês | MEDLINE | ID: mdl-38269445

RESUMO

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.

2.
Clin Rehabil ; 38(2): 263-284, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-37933440

RESUMO

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.


Assuntos
Reabilitação Psiquiátrica , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Revisões Sistemáticas como Assunto , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/psicologia , Pesquisa Qualitativa , Sobreviventes/psicologia
3.
Int J Stroke ; 18(3): 268-277, 2023 03.
Artigo em Inglês | MEDLINE | ID: mdl-35619566

RESUMO

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.


Assuntos
Qualidade de Vida , Acidente Vascular Cerebral , Humanos , Qualidade de Vida/psicologia , Acidente Vascular Cerebral/terapia , Emoções , Adaptação Psicológica , Cuidadores/psicologia
4.
Qual Health Res ; 33(1-2): 53-62, 2023 01.
Artigo em Inglês | MEDLINE | ID: mdl-36420949

RESUMO

Physicians, nurses, social workers, and allied health professionals including physiotherapists and occupational therapists play important roles as they work closely with stroke survivors to improve functional independence in daily activities and quality of life. Yet, in Singapore little is known about their perspectives on what constitute quality stroke care based on their clinical experiences. In this project, our qualitative interviews with 15 healthcare workers at a major stroke center in the country yielded a Continuity of Care Advocate Model (CCAM) to help us better understand our participants' experience-based perspectives on quality stroke care. We found that CCAM, constructed based on the perspectives of HCWs across a stroke care continuum, is a holistic model of quality stroke care which prioritizes support for patients and their families throughout the patient's health trajectory. We conclude by discussing how this model is aligned with and differs from current research on definitions of care continuity.


Assuntos
Fisioterapeutas , Reabilitação do Acidente Vascular Cerebral , Acidente Vascular Cerebral , Humanos , Singapura , Qualidade de Vida , Acidente Vascular Cerebral/terapia , Centros de Reabilitação , Pesquisa Qualitativa
5.
BMC Palliat Care ; 21(1): 59, 2022 Apr 29.
Artigo em Inglês | MEDLINE | ID: mdl-35488270

RESUMO

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.


Assuntos
Cuidadores , Pais , Criança , Estudos de Viabilidade , Humanos , Projetos Piloto , Singapura , Redação
6.
Front Psychol ; 12: 744443, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34744918

RESUMO

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.

7.
Front Psychol ; 12: 730709, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34552538

RESUMO

Loneliness has become a global major public health concern, with detrimental effects to the young and old. ARTISAN (Aspiration and Resilience Through Intergenerational Storytelling and Art-based Narratives) is a 5-week, 15-h participatory art and group-based intervention that focuses on resilience building and loneliness alleviation among the young and old through a structured multimodal framework held at a museum space. Developed with a Participatory Action Research (PAR) approach, this intervention is evaluated using an open-label waitlist randomized controlled trial design (RCT) comprised of community-dwelling youth and older adults randomized into an intervention group (n = 35) or a waitlist-control group (n = 33). Participants were assessed on standardized self-reported psychometric measures including loneliness, resilience, quality of life, social support, life satisfaction and national identity at three time points. Qualitative data generated during each intervention session as well as acceptability focus groups were recorded and transcribed. Linear mixed modeling analyses revealed that participants in the intervention group experienced improvements in life satisfaction compared to participants in the waitlist-control group (95% CI: 0.22 to 0.77, p < 0.001, Cohen's d = 0.53) immediately after the completion of ARTISAN. Subgroup analyses for youth participants indicated improvements in quality of life (95% CI: 0.16 to 0.52, p < 0.001, d = 1.31) and national identity (95% CI: 0.18 to 0.80, p = 0.002, d = 0.43) in comparison to the waitlist-control group. At 5-weeks follow-up, the intervention group participants continued to experience high levels of life satisfaction (95% CI: 0.04 to 0.42, p = 0.017, d = 0.47), enhancements in resilience (95% CI: 0.07 to 0.55, p = 0.011, d = 0.46), as well as a significant reduction in loneliness (95% CI: -0.34 to -0.08, p = 0.001, d = 0.61) compared to baseline, reflecting the effectiveness and positive residual effects of the ARTISAN intervention. Similarly, the qualitative findings provided support for the intervention and additional insights to the quantitative findings. This holistic intervention framework that integrates stories, arts and heritage for bridging and empowering lives fills a critical gap in knowledge and practice between the arts, health and citizenship, paving the way for further research in creating a more caring and inclusive society with the arts. Clinical Trials Registration:www.ClinicalTrials.gov, identifier: NCT03048708.

8.
Psychooncology ; 30(7): 1029-1040, 2021 07.
Artigo em Inglês | MEDLINE | ID: mdl-33728728

RESUMO

OBJECTIVE: The palliative journey can be emotionally stressful for both patients with advanced cancer and their families. Psychological resilience is crucial in aiding with patients' adaptation and post-traumatic growth. The aim of this systematic review was to critically examine the definitions of psychological resilience and its associated factors in palliative patients with advanced cancer. METHODS: Four databases were systematically searched from inception to August 2020. Both qualitative and quantitative studies that examined factors associated with psychological resilience in a sample of patients with advanced cancer undergoing palliative care were included. RESULTS: A total of 15 studies met the criteria, of which 10 were qualitative and five were quantitative. Nine studies included a definition of psychological resilience, from which five common themes of buffering, adaptation, resources, recovery, and growth were derived. The quantitative studies found association between resilience and hope, independence, social support, fatigue, emotional distress, and coping strategies. The qualitative studies reported additional sources of resilience such as spirituality, social support, prior experience dealing with illness and life adversity, meaning-making, reconciling with life's finiteness, acceptance of illness, control, determination, positive attitude, dignity, engagement with palliative care and quality of life being supported by palliative care. CONCLUSIONS: More research is needed for developing an overarching definition of psychological resilience in palliative advanced cancer patients that acknowledges and appreciates the contextual sensitivity of this concept among different cultural groups. Further studies are also needed to examine a holistic range of bio-psycho-socio-spiritual factors associated with psychological resilience among these patients and their families.


Assuntos
Neoplasias , Resiliência Psicológica , Adaptação Psicológica , Humanos , Cuidados Paliativos , Qualidade de Vida
9.
Am J Hosp Palliat Care ; 37(5): 385-398, 2020 May.
Artigo em Inglês | MEDLINE | ID: mdl-31581779

RESUMO

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.


Assuntos
Cuidados Paliativos/psicologia , Assistência Terminal/psicologia , Família/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Relações Interpessoais , Educação de Pacientes como Assunto , Autonomia Pessoal , Respeito
10.
BMJ Open ; 9(11): e029555, 2019 11 21.
Artigo em Inglês | MEDLINE | ID: mdl-31753869

RESUMO

OBJECTIVE: To assess the frequency and intensity of arts engagement inclusive of active and passive engagements in arts, culture and heritage activities among Singaporean adults aged 50 and above, and examine the relationships between participatory art and holistic well-being. DESIGN: Cross-sectional stratified household survey. SETTING: All residential areas across Singapore's Central, East, North, North-East and West Regions. PARTICIPANTS: 1067 community-dwelling, Singaporean older adults between the ages of 50 and 95 years were recruited. PRIMARY AND SECONDARY OUTCOME MEASURES: Respondents completed a self-reported questionnaire, consisting of standardised ad hoc items assessing the frequencies and durations of active and passive participatory arts engagement, as well as validated psychometric assessments on psychosociospiritual health including the primary outcome measure on quality of life, and the secondary outcome measures on physical, psychological, emotional, spiritual, and social well-being. sociodemographic information, as well as frequency and intensity of physical activity were also collected. RESULTS: Passive engagement (60%) and active engagement (17%) in the arts were associated with better holistic wellness and social support. Specifically, findings from the propensity score matching and independent t-test analyses revealed that adults aged 50 and above who passively engaged in arts and culture-related events experienced higher quality of life (t(728)=3.35, p=0.0008, d=0.25), perceived health (t(728)=2.21, p=0.0277, d=0.16) and sense of belonging (t(728)=2.17, p=0.03, d=0.16), as compared with those who did not. Moreover, those who actively engaged in participatory arts experienced greater quality of life (t(442)=3.68, p=0.0003, d=0.36), self-rated health (t(442)=2.59, p=0.0099, d=0.25), spiritual well-being (t(442)=3.75, p=0.0002, d=0.37), meaning in life (t(442)=5.03, p<0.0001, d=0.50) and sense of peace (t(442)=3.72, p=0.0002, d=0.36), as compared with those who did not actively engaged in the arts. CONCLUSION: This study provided robust evidence to support a significant causal relationship between arts engagements and holistic well-being. Recommendations for art-based public health and elderly care research, practice and policy are discussed.


Assuntos
Arte , Promoção da Saúde/métodos , Envelhecimento Saudável/psicologia , Saúde Holística , Qualidade de Vida/psicologia , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Humanos , Masculino , Saúde Mental , Pessoa de Meia-Idade , Pontuação de Propensão , Autoimagem , Singapura
11.
Trials ; 20(1): 406, 2019 Jul 08.
Artigo em Inglês | MEDLINE | ID: mdl-31287010

RESUMO

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.


Assuntos
Arteterapia , Esgotamento Profissional/prevenção & controle , Empatia , Pessoal de Saúde/psicologia , Atenção Plena , Resiliência Psicológica , Assistentes Sociais/psicologia , Assistência Terminal/psicologia , Esgotamento Profissional/diagnóstico , Esgotamento Profissional/psicologia , Humanos , Ensaios Clínicos Controlados Aleatórios como Assunto , Singapura , Fatores de Tempo , Resultado do Tratamento , Listas de Espera
12.
Palliat Support Care ; 17(2): 234-244, 2019 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-30058506

RESUMO

OBJECTIVE: To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes. METHOD: Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches. RESULT: Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes. SIGNIFICANCE OF RESULTS: Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps.

13.
Trials ; 18(1): 587, 2017 Dec 04.
Artigo em Inglês | MEDLINE | ID: mdl-29202863

RESUMO

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.


Assuntos
Cuidadores/psicologia , Relações Familiares , Saúde Holística , Cuidados Paliativos/métodos , Pacientes/psicologia , Pessoalidade , Assistência Terminal/métodos , Protocolos Clínicos , Emoções , Humanos , Entrevistas como Assunto , Qualidade de Vida , Projetos de Pesquisa , Singapura , Apoio Social , Espiritualidade , Inquéritos e Questionários , Resultado do Tratamento
14.
Age Ageing ; 42(4): 455-61, 2013 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-23443510

RESUMO

BACKGROUND: the empirical Dignity Model has profoundly influenced the provision of palliative care for older terminally ill patients in the West, as it provides practical guidance and intervention strategies for promoting dignity and reducing distress at the end-of-life. OBJECTIVE: to examine the concept of 'living and dying with dignity' in the Chinese context, and explore the generalisability of the Dignity Model to older terminal patients in Hong Kong. METHODS: using qualitative interviews, the concept of dignity was explored among 16 older Chinese palliative care patients with terminal cancer. Framework analysis with both deductive and inductive methods was employed. RESULTS: the three major categories of themes of the Dignity Model were broadly supported. However, the subtheme of death anxiety was not supported, while two subthemes of generativity/legacy and resilience/fighting spirit manifested differently in the Chinese context. Furthermore, four new emergent themes have been identified. They include enduring pain, moral transcendence, spiritual surrender and transgenerational unity. CONCLUSION: these findings highlight both a cultural and a familial dimension in the construct of dignity, underline the paramount importance of cultural awareness and competence for working with ethnically diverse groups, and call for a culturally sensitive and family oriented approach to palliative care interventions with older Chinese terminal patients.


Assuntos
Envelhecimento , Povo Asiático/etnologia , Atitude Frente a Morte/etnologia , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Serviços de Saúde para Idosos , Neoplasias/terapia , Cuidados Paliativos , Pessoalidade , Direito a Morrer , Adaptação Psicológica , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Envelhecimento/etnologia , Envelhecimento/psicologia , Conscientização , Efeitos Psicossociais da Doença , Características Culturais , Relações Familiares/etnologia , Feminino , Hong Kong/epidemiologia , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Neoplasias/etnologia , Neoplasias/mortalidade , Neoplasias/psicologia , Espiritualidade , Assistência Terminal
15.
Am J Chin Med ; 40(2): 255-67, 2012.
Artigo em Inglês | MEDLINE | ID: mdl-22419421

RESUMO

The objective of this study was to assess evidence for the efficacy and effectiveness of Chinese qigong exercise in rehabilitative programs among cardiac patients. Thirteen databases were searched through to November 2010, and all controlled clinical trials on Chinese qigong exercise among patients with chronic heart diseases were included. For each included study, data was extracted and validity was assessed. Study quality was evaluated and summarized using both the Jadad Scale and the criteria for levels of evidence. Seven randomized controlled trials (RCTs) and one non-randomized controlled clinical trial (CCT) published between 1988 and 2007 met the inclusion criteria. In total, these studies covered 540 patients with various chronic heart diseases including atrial fibrillation, coronary artery disease, myocardial infarct, valve replacement, and ischemic heart disease. Outcome measures emerged in these studies included subjective outcomes such as symptoms and quality of life; and objective outcomes such as blood pressure, ECG findings, and exercise capacity, physical activity, balance, co-ordination, heart rate, and oxygen uptake. Overall, these studies suggest that Chinese qigong exercise seems to be an optimal option for patients with chronic heart diseases who were unable to engage in other forms of physical activity; however, its efficacy and effectiveness in cardiac rehabilitation programs should be further tested.


Assuntos
Exercícios Respiratórios , Cardiopatias/reabilitação , Ensaios Clínicos como Assunto , Coração/fisiopatologia , Cardiopatias/fisiopatologia , Humanos
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