Palliative & Supportive Care最新文献

Objectives: People with advanced cancer express the need for support to balance everyday activities to experience quality of life. The Balance, Activity and Quality of Life Intervention was developed to address this need using a resource- and activity-oriented approach that integrates rehabilitation into palliative care. To inform a future full-scale evaluation, the objective of this feasibility study was to test if the selected outcome measures of health-related quality of life, including physical function and fatigue, and occupational balance could capture any possible changes of the Balance, Activity and Quality of Life Intervention in people with advanced cancer.

Methods: Repeated-measurement feasibility study without a control group (ClinicalTrials.gov NCT04772690). Twenty-two home-living adults with advanced cancer participated in the study. The intervention was delivered at the research clinic of REPHA, The Danish Knowledge Centre for Rehabilitation and Palliative Care. Data regarding health-related quality of life, including physical function and fatigue, and occupational balance were collected with the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core-30 and the Occupational Balance Questionnaire at baseline, after a 5-day intervention stay and at 6- and 12-week follow-up.

Results: The outcome measure of health-related quality of life captured a statistically significant improvement (p = 0.0046) after the 5-day intervention stay, with 64% of the participants experiencing clinically relevant improvements. No other statistically significant changes were found. Missing data were minor.

Significance of results: Health-related quality of life is a promising outcome measure to capture the possible changes of the Balance, Activity and Quality of Life Intervention. The results indicate that a resource- and activity-oriented approach may be helpful when integrating rehabilitation into palliative care.

Objectives: Healthcare provider self-disclosures are common although sometimes controversial. Providers have unique opportunities to self-disclose for the purpose of conveying empathic concern during Dignity Therapy sessions. We examine the topics of empathic self-disclosures (ESDs) during Dignity Therapy sessions.

Methods: We analyzed 203 audio-recorded, transcribed Dignity Therapy sessions from a stepped-wedge, randomized trial of Dignity Therapy led by 14 nurses and chaplains in outpatient palliative care. We extracted 117 ESDs across sessions and applied thematic analysis guided by the constant comparative method to generate ESD topic themes and properties.

Results: Providers disclosed ESDs referring to topics of Relationships and Family, Personal Experiences and Characteristics, Cohort Communalities, Location and Geography, and Values. Though each provider led multiple Dignity Therapy sessions in this dataset, providers rarely disclosed the same information to more than one patient. Some disclosures subtly shifted the patient's life review. Providers often acknowledged patients that their self-disclosures were not prescribed elements of Dignity Therapy sessions.

Significance of results: Providers engage in ESD across a range of personal topics in a Dignity Therapy context. Some ESD topics overlapped with those considered appropriate in existing health communication literature. Other topics involved complex or underexamined types of disclosures. While self-disclosures appear to be made with empathic intent, providers undermined the impact of some ESDs by portraying them as unprescribed components of the conversation. More research is needed to assess the positive and negative impacts of ESDs during Dignity Therapy and to support augmentation of Dignity Therapy training protocols to account for providers' ESDs.

Objectives: Coping-Together is a self-directed, self-management intervention initially developed for patients in early-stages of cancer and their caregivers. This study evaluated its acceptability among patients with advanced cancer and their caregivers.

Methods: Twenty-six participants (patients with advanced cancer n = 15 and their caregivers n = 11) were given the Coping-Together materials (6 booklets and a workbook) for 7 weeks. Participants were interviewed twice during this time to solicit feedback on the intervention's content, design, and recommended changes. Audio-recorded interviews were transcribed verbatim, and thematic analysis was conducted.

Results: Participants found Coping-Together was mostly relevant. All (n = 26, 100%) participants expressed interest and a desire to improve their self-management skills. Perceived benefits included learning to develop SMARTTER (specific, measurable, attainable, relevant, timely, and done together) self-management plans, normalizing challenges, and enhancing communication within the dyad and with their healthcare team. Most (n = 25, 96%) identified strategies from the booklets that benefited them. Top strategies learned were skills to manage physical health (n = 20, 77%) (e.g., monitoring symptoms), emotional well-being (n = 21, 81%) (e.g., reducing stress by reframing thoughts), as well as social well-being (n = 24, 92%) (e.g., communicating with their healthcare team). Barriers included illness severity and time constraints. The unique advanced cancer needs that are to be integrated include support related to fear of death, uncertainty, palliative care and advanced care planning. Suggested modifications involved enhancing accessibility and including more advanced cancer information (e.g., end-of-life planning, comfort care, resources).

Significance of results: Participants reported several benefits from using Coping-Together, with minimal adaptations needed. Creating SMARTTER self-management plans helped them implement self-management strategies. Specific areas for improvement addressed the need for improved accessibility and more content related to advanced cancer. Findings demonstrate how Coping-Together is acceptable for those living with advanced cancer and their caregivers, offering much of the support needed to enhance day-to-day quality of life.

Objectives: This review provides an overview of patient-reported outcome measure (PROMs) utilized to assess the impact of advance care planning (ACP) among older adults and evaluates their psychometric properties.

Methods: The inclusion criteria were as follows: (1) studies that targeted older adults; (2) studies using of any type of measurement tools that measure patient-reported ACP program outcomes; and (3) studies published in English or Korean. Following PRISMA guidelines, a systematic review was conducted, encompassing electronic searches across 5 databases including PubMed, EMBASE, Cochrane Library, CINHAL, and PsycINFO and manual searches of umbrella reviews on ACP interventions. General characteristics of the selected measures were extracted, and their methodological quality was assessed using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist.

Results: Out of 19,503 studies initially identified, 74 met the inclusion criteria, reporting on a total of 202 measures. These measures were categorized into 4 domains reflecting the targets of ACP interventions: process (n = 56), action (n = 18), process and action (n = 16), quality of care (n = 63), and health status (n = 49). Despite the breadth of measures identified, none fully met all recommended psychometric properties outlined in the checklist.

Significance of results: While this review aids in the selection of measures for both practical and research purposes, it underscores the necessity for further validation of PROMs in assessing ACP outcomes in older adults, advocating for rigorous psychometric evaluations and adherence to standards like the COSMIN checklist to ensure reliable and valid data. It suggests the need for shortened versions and researcher assistance to address the challenges older adults face with self-reported PROMs and improve participation rates.

Objectives: This study aimed to evaluate the psychometric properties of the Persian version of the International ICD-11 Prolonged Grief Disorder Scale (IPGDS).

Methods: A total of 554 participants (18 years and older, 326 women) completed the Persian IPGDS along with other measures. Participants were recruited through convenience sampling. The study assessed confirmatory factor analysis (CFA), convergent validity, and reliability of the Persian IPGDS.

Results: CFA supported a 4-dimensional model, indicating good structural validity of the Persian IPGDS. Convergent validity was established through correlations with measures of depression, anxiety, and PTSD.

Significance of results: These findings suggest that the Persian IPGDS exhibits satisfactory psychometric properties, making it a valid tool for measuring Prolonged Grief Disorder (PGD) in Persian-speaking Iranian adults.

Objectives: Recent studies have challenged the assumption that families are invariable sources of support for cancer caregivers, noting that relationships with family members can have both positive and negative effects on caregiver well-being. This study expands upon prior literature to examine the relationship between cancer caregivers' perceptions of the quality of their family interactions and their symptoms of anxiety.

Methods: We employed secondary analysis of baseline data from a multisite randomized clinical trial of an intervention for cancer caregivers conducted at 3 large academic palliative care clinics. We performed linear regression analyses to analyze the relationship between caregivers' perceptions of the quality of their family interactions and their symptoms of anxiety; additional models were estimated to further characterize this relationship with the addition of relevant covariates: race, ethnicity, sex, marital/relationship status, relationship to patient, employment status, household income, and perceived social support received from friends and significant others. We also conducted a sub-analysis of data provided by caregivers who were married or partnered to examine the relationship between their perceptions of the quality of their family interactions and their symptoms of anxiety with relationship satisfaction as a covariate.

Results: Among our analytic sample (n = 244), we identified a significant negative relationship between cancer caregivers' perceptions of the quality of their family interactions and their symptoms of anxiety; this relationship remained statistically significant with the addition of covariates. Relationship satisfaction was not found to be a statistically significant covariate in our sub-analysis of married or partnered caregivers.

Significance of results: Study results provide strong support for the development, testing, and implementation of interventions to improve family interactions as a strategy to reduce caregiver anxiety.

Objectives: Palliative care, which was formally established in the Global North, is now recognized globally as part of health care. As part of a larger study, we were interested in how decision-makers at a leading hospice in South Africa understood the changing local context and its influence on the delivery of services. We were interested in how the concept of "total pain," as outlined by Saunders, applies in a very unequal and under-resourced society in the shadow of a long, oppressive colonial, and apartheid past.

Methods: We conducted face-to-face semi-structured interviews with 12 staff at St Luke's Combined Hospices in Cape Town, South Africa, and analyzed the data following Braun and Clarke's thematic analysis approach.

Results: Four major themes emerged from the data. First, St Luke's has faced the challenge of serving a larger and far more diverse population than it had under apartheid. Second, the organization has undergone a process of rethinking holism and holistic services offered to palliative care patients in this context. Third, diversity and cultural sensitivity are key to how services are offered, and finally, the concept of "total pain" in this context is linked to questions of power and empowerment.

Significance of results: This study is small and situated within a particular context, and it is clear that more data are needed. Nevertheless, the study shows that considering the Global South and postcolonial context is important for thinking about total pain and a global system of palliative care which is sensitive to the majority world context.

Objectives: To explore the potential of incorporating personally meaningful rituals as a spiritual resource for Western secular palliative care settings. Spiritual care is recognized as critical to palliative care; however, comprehensive interventions are lacking. In postmodern societies, the decline of organized religion has left many people identifying as "no religion" or "spiritual but not religious." To assess if ritual could provide appropriate and ethical spiritual care for this growing demographic requires comprehensive understanding of the spiritual state and needs of the secular individual in postmodern society, as well as a theoretical understanding of the elements and mechanisms of ritual. The aim of this paper is to provide a comprehensive and theoretically informed exploration of these elements through a critical engagement with heterogeneous literatures.

Methods: A hermeneutic narrative review, inspired by complexity theory, underpinned by a view of understanding of spiritual needs as a complex mind-body phenomenon embedded in sociohistorical context.

Results: This narrative review highlights a fundamental spiritual need in postmodern post-Christian secularism as need for embodied spiritual experience. The historical attrition of ritual in Western culture parallels loss of embodied spiritual experience. Ritual as a mind-body practice can provide an embodied spiritual resource. The origin of ritual is identified as evolutionary adaptive ritualized behaviors universally observed in animals and humans which develop emotional regulation and conceptual cognition. Innate human behaviors of creativity, play, and communication develop ritual. Mechanisms of ritual allow for connection to others as well as to the sacred and transcendent.

Significance of results: Natural and innate behaviors of humans can be used to create rituals for personally meaningful spiritual resources. Understanding the physical properties and mechanisms of ritual making allows anyone to build their own spiritual resources without need of relying on experts or institutionalized programs. This can provide a self-empowering, client-centered intervention for spiritual care.

Objectives: More than 50% of patients with dementia visit the emergency department (ED) each year. Patients with dementia experience frequently unrelieved symptoms that can benefit from palliative care. Response to palliative care needs in the ED can be quite challenging and access to palliative care is generally scarce. The aim of this scoping review is to assess ED use and responsiveness to palliative care needs of patients with dementia in their last year of life.

Methods: A scoping literature review following the Joanna Briggs Institute methodology. Electronic search of the literature was undertaken in Medline (PubMed), Web of Science, Scopus, Scielo, and APA PsycInfo, last updated on 19 February 2024.

Results: Twenty-four studies were identified and confirmed that patients with dementia frequently resort to the ED near the end of life, frequently more than once in their last year of life. Eight studies directly addressed palliative care needs, suggesting significant rates of palliative care needs among patients with dementia and in comparison, to other oncological or non-oncological conditions. Infections and neuropsychiatric symptoms were the main reasons of admission to the ED. Access to palliative care was confirmed to be low.

Significance of results: This scoping review indicates that patients with dementia frequently resource to the ED in their last year of life with unmet palliative care needs. Although scarce access to palliative care and the existence of important barriers in the ED, palliative care intervention in this setting can be seen as an opportunity to attend palliative care needs and referral to palliative care services.

Objectives: Supporting family caregivers (FCs) is a critical core function of palliative care. Brief, reliable tools suitable for busy clinical work in Taiwan are needed to assess bereavement risk factors accurately. The aim is to develop and evaluate a brief bereavement scale completed by FCs and applicable to medical staff.

Methods: This study adopted convenience sampling. Participants were approached through an intentional sampling of patients' FCs at 1 palliative care center in Taiwan. This cross-sectional study referred to 4 theories to generate the initial version of the Hospice Foundation of Taiwan Bereavement Assessment Scale (HFT-BAS). A 9-item questionnaire was initially developed by 12 palliative care experts through Delphi and verified by content validity. A combination of exploratory factor analysis (EFA), reliability measures including items analysis, Cronbach's alpha and inter-subscale correlations, and confirmatory factor analysis (CFA) was employed to test its psychometric properties.

Results: Two hundred seventy-eight participants conducted the questionnaire. Three dimensions were subsequently extracted by EFA: "Intimate relationship," "Existential meaning," and "Disorganization." The Cronbach's alpha of the HFT-BAS scale was 0.70, while the 3 dimensions were all significantly correlated with total scores. CFA was the measurement model: chi-squared/degrees of freedom ratio = 1.9, Goodness of Fit Index = 0.93, Comparative Fit Index = 0.92, root mean square error of approximation = 0.08. CFA confirmed the scale's construct validity with a good model fit.

Significance of results: This study developed an HFT-BAS and assessed its psychometric properties. The scale can evaluate the bereavement risk factors of FCs in clinical palliative care.