The American journal of hospice & palliative care最新文献

{"title":"Parkinson's Disease Carepartners' Perceptions of the Challenges and Rewards of Caregiving.","authors":"Sandhya Seshadri, Angela Contento, Kei Sugiura, Maryann Abendroth, Zachary Macchi, Benzi M Kluger","doi":"10.1177/10499091231223739","DOIUrl":"10.1177/10499091231223739","url":null,"abstract":"<p><strong>Background: </strong>Multiple debilitating symptoms and the progressive nature of Parkinson's disease (PD) affect carepartners' quality of life. Although, there is abundant knowledge on caregiver burden there is limited knowledge on PD carepartners' perceptions of caregiving.</p><p><strong>Aim: </strong>To understand family members' perception of their role, and of the challenges and rewards of PD caregiving.</p><p><strong>Method: </strong>Using a qualitative descriptive research design, we conducted semi-structured interviews with current and former PD carepartners <i>(n = 16)</i>. Interviews were audio-recorded, de-identified, and transcribed verbatim. Data were coded and analyzed to identify themes.</p><p><strong>Results: </strong>We identified 5 themes: <i>(a) Unpredictability is the hardest part of caregiving.</i> It was hard to cope with the unpredictable daily and longer-term fluctuations in PD symptoms; <i>(b) Disease progression and multiple symptoms contribute to carepartners' emotional distress</i>. Carepartners felt unprepared and were saddened by the patient's and their own losses; <i>(c) Caring for a family member is not a \"burden.\"</i> Though stressful, carepartners resisted associating caregiving with the term \"burden\"; <i>(d) Caregiving is a partnership.</i> Carepartners saw their role as being less of \"givers\" and more of partners in disease management<i>;</i> and <i>(e) Caregiving is an opportunity for personal satisfaction, joy, and growth.</i> Caregiving was seen as a \"gift\" that enabled carepartners to express love and experience personal growth.</p><p><strong>Conclusions: </strong>Despite challenges PD carepartners view their role as \"partners\" in the management of the disease and find meaning and strength in caregiving. A palliative care approach emphasizing the positives and challenges of caregiving may provide carepartners with better support.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1442-1450"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139543893","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The Perspective of Cancer Patients in Palliative Care on Unmet Needs: A Qualitative Synthesis Using Meta-Ethnography.","authors":"Ilaria Basile, Letteria Consolo, Daniele Rusconi, Laura Arba, Flavia Rampichini, Augusto Caraceni, Maura Lusignani","doi":"10.1177/10499091231226429","DOIUrl":"10.1177/10499091231226429","url":null,"abstract":"<p><strong>Background: </strong>As cancer patients approach the end of life, their needs become more complex, increasing the demand for palliative care. Advanced-stage cancer patients encounter increasing unmet psychological, physical, autonomy, and communication needs, reflecting the difference between patients' perceived requirements and the support from health care professionals. The objective of this study was to synthesize qualitative evidence on unmet needs in palliative cancer care among inpatient and outpatient adults.</p><p><strong>Methods: </strong>We conducted a meta-ethnographic review according to Noblit and Hare's framework and the operationalized guidelines developed by Sattar. The eMERGe Reporting Guidance was followed. A literature search was conducted in Cinahl, Embase, Medline, Scopus, Web of Science, PsycINFO and Google Scholar for gray literature. For all the studies, direct quotes from the participants and authors' results were identified, coded and analyzed in NVivo 1.7.1 and extracted as I and II order constructs from which higher third-order themes originated.</p><p><strong>Results: </strong>Eight studies were included. Four new themes emerged, representing areas where palliative cancer care patients expressed a need for help: <i>the need for comprehensive, patient-centered care, the need for maintaining a sense of autonomy and dignity, the need for attentive support to patients' soul and the need for accessible and timely care.</i></p><p><strong>Conclusions: </strong>Palliative care patients require a secure, suffering-free end-of-life journey with informed decision-making and team support. Ensuring continuity of care, validating their suffering, and allocating sufficient time are crucial aspects of care. This involves maintaining a consistent care plan, respecting patients' emotions and experiences, and providing services tailored to individual needs.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1491-1505"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11430178/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139099443","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Pediatric Oncology Hospice: A Comprehensive Review.","authors":"Ali Tafazoli, Katharine Cronin-Wood","doi":"10.1177/10499091241227609","DOIUrl":"10.1177/10499091241227609","url":null,"abstract":"<p><p>Pediatric hospice is a new terminology in current medical literature. Implementation of pediatric hospice care in oncology setting is a vast but subspecialized field of research and practice. However, it is accompanied by substantial uncertainties, shortages and unexplored sections. The lack of globally established definitions, principles, and guidelines in this field has adversely impacted the quality of end-of-life experiences for children with hospice needs worldwide. To address this gap, we conducted a comprehensive review of scientific literature, extracting and compiling the available but sparse data on pediatric oncology hospice from the PubMed database. Our systematic approach led to development of a well-organized structure introducing the foundational elements, highlighting complications, and uncovering hidden gaps in this critical area. This structured framework comprises nine major categories including general ideology, population specifications, role of parents and family, psychosocial issues, financial complications, service locations, involved specialties, regulations, and quality improvement. This platform can serve as a valuable resource in establishing a scientifically reliable foundation for future experiments and practices in pediatric oncology hospice.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1467-1481"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11425979/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139473136","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Compassionate Presence in Seriously Ill Cancer Patients.","authors":"M Renz, C Gloggner, D Bueche, U Renz","doi":"10.1177/10499091241226629","DOIUrl":"10.1177/10499091241226629","url":null,"abstract":"<p><p><i>Background</i>: Compassion is a relational response to patients' suffering. Palliative care focuses not only on skills but also on compassion. Nevertheless, incorporated patient perspectives are largely missing from existing research. <i>Aim</i>: Our mixed-method exploratory study in a major Swiss cancer center sought to better understand compassionate presence, its benefits and challenges for patients and providers (ie, close relatives, close friends, and professionals-all referred to here as providers). It also investigated providers' motivation. <i>Method</i>: Twelve multidisciplinary, specially trained professionals interviewed 50 patients who had received compassionate presence. All patients had advanced cancer with risk of death. Providers were also interviewed. Data on the positive and burdensome effects of compassionate presence on patients and providers were gathered using a specific protocol. This also served to record patients' characteristics and providers' motivations to give compassion and whether providers felt sustained (eg, by nature). <i>Results</i>: The study suggests a high impact of compassionate presence with benefits on patients (50/50) and on providers (49/50). Enhanced connectedness was evident not only in the patient-provider relationship (38/50) but also, for instance, in an increased ability to love (8/50) or in an intensified solidarity (29/50). A considerable number of patients and providers experienced mental-spiritual change but also burdensome effects (eg, ambivalences). Providers showed a range of motivations. <i>Conclusion</i>: Compassion is not only necessary in existential crises and near death, but also happens and takes considerable effects precisely in such situations.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1408-1422"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139503312","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Oncology and Palliative Care Integration Model: A Cost Analysis Study in a Brazilian Hospital Setting.","authors":"Tânia V V Guimarães, Alessandro G Campolina, Luciana M Rozman, Toshio Chiba, Patrícia C de Soárez, Maria D P Estevez Diz","doi":"10.1177/10499091241232401","DOIUrl":"10.1177/10499091241232401","url":null,"abstract":"<p><p><b>Background:</b> In 2019, the São Paulo State Cancer Institute (ICESP) implemented a novel model integrating Oncology with Palliative Care specialists. We evaluated the impact of this model on healthcare resource utilization and costs. <b>Methods:</b> We analyzed data from all patients who passed away in February (1 month prior to implementation) and November (8 months after model implementation group) at ICESP, Brazil. Healthcare utilization data, including emergency department visits, hospital and intensive care unit admissions, chemotherapy, and radiotherapy use, were retrieved from Electronic Medical Records. Unit cost values were obtained from the administrative database. <b>Results:</b> A total of 198 patients who died in February and 196 in November were included in the analysis. Groups exhibited similarities in sex, age, ECOG, cancer type, previous outpatient palliative care consultations, and place of death (ward: 56.6% pre-intervention, 50% post-intervention). The mean cost per patient was US$13,226.29 pre-intervention and US$11,445.82 post-intervention (<i>P</i> = .007). Statistically significant differences were noted in days hospitalized in the surgical ward (227 vs 115), emergency department visits (233 vs 45), chemotherapy sessions (140 vs 26), and radiotherapy sessions (146 vs 10). Excluding outpatient treatments, the total costs for chemotherapy and radiotherapy in the last 30 days of life were US$16,924.45 pre-intervention and US$7851.65 post-intervention. Reductions were more pronounced in patients with ECOG 3-4 (<i>P</i> = .039). <b>Conclusion:</b> Our data suggests that the integration model was associated with a reduction in potentially inappropriate treatments during the last month of life, leading to decreased healthcare utilization and costs.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1451-1458"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139914375","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Is This a Deceased Loved One That I See Before Me or Am I Only Dreaming?","authors":"Stephen Claxton-Oldfield","doi":"10.1177/10499091241237257","DOIUrl":"10.1177/10499091241237257","url":null,"abstract":"<p><p>This article makes a case for examining dying person's visions during wakefulness and their dreams during sleep as separate and unique phenomena. The reason being that the mode of experience, for example, being visited by a deceased loved one while awake and conscious vs having a deceased loved one appear in a dream while asleep, may have a different impact on the dying person. A better understanding of the content and impact of waking visions and sleeping dreams, respectively, may be beneficial to both dying persons and their families.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1506-1510"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"140041251","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Promising Impact of Telenovela Intervention for Caregivers of Hospice Patients: A Pilot Study.","authors":"Dulce M Cruz-Oliver, Gabrielle E Milner, Kelsea Mensh, Marielle Bugayong, Marcela D Blinka, Nowella Durkin, Martha Abshire Saylor, Chakra Budhathoki, Debra Parker Oliver","doi":"10.1177/10499091241228835","DOIUrl":"10.1177/10499091241228835","url":null,"abstract":"<p><strong>Background: </strong>Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%).</p><p><strong>Methods: </strong>This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed.</p><p><strong>Results: </strong>Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (<i>P</i> > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%.</p><p><strong>Conclusion: </strong>Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"1400-1407"},"PeriodicalIF":0.0,"publicationDate":"2024-12-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139699199","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Palliative Home Care Based on Clinically Relevant Scientific Measures: A Cross-Sectional Study.","authors":"Ubolrat Piamjariyakul, Stephanie Young, Ann E Hendrickson, R Osvaldo Navia, Kesheng Wang, Carol E Smith","doi":"10.1177/10499091241304728","DOIUrl":"https://doi.org/10.1177/10499091241304728","url":null,"abstract":"<p><p><b>Introduction:</b> Measuring palliative care needs of patients with multiple complex illnesses and their family, is essential for providing quality clinical care. The integrated palliative care outcome scale (IPOS) is a scientifically verified measure of patients' physical, emotional symptoms, and their palliative care communication and practical needs. The patients in this study require palliative care due to both their end-of-life heart failure (HF) and vascular dementia. <b>Purpose:</b> The purposes are to describe and compare home palliative care needs measured by the family caregivers (N = 20) and patients (N = 20) IPOS scores and to examine whether the patient IPOS total score can predict patient HF health status and caregiving burden scores. <b>Methods:</b> This study uses explanatory research design with rigorous methods for obtaining information from multiple sources. Descriptive, Cohen's Kappa (k) statistics comparing patient and caregiver IPOS scores and regression analyses to examine the patient IPOS scores impact on patient HF health status and caregiving burden scores were used. <b>Results:</b> There was significant agreement between patient and caregiver ratings on 16 out of 17 IPOS items (k = .34 to .80). Regression analyses found that the patient IPOS total score significantly predicted patients' HF health status (<i>β</i> = -.50, <i>P</i> < .05), and caregiving burden scores (<i>β</i> = .57, <i>P</i> < .01). <b>Conclusion:</b> Patients' and their caregivers' IPOS scores agreement indicates palliative care needs can be consistently identified. The patient IPOS total scores can predict patients' HF health status and caregiving burden. These measures provide information directly applicable for health professionals guiding palliative home care.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091241304728"},"PeriodicalIF":0.0,"publicationDate":"2024-11-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142741018","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Disclosure Practices in Muslim Patients and the Impact on End-of-Life Care: A Narrative Review.","authors":"Mona Tareen","doi":"10.1177/10499091241303684","DOIUrl":"https://doi.org/10.1177/10499091241303684","url":null,"abstract":"<p><p><b>Context:</b> Non-disclosure practices hold significant weight in end-of-life care for Muslim communities, where cultural and religious beliefs are deeply intertwined with healthcare decision-making. This narrative review explores the complexities of medical decision-making and disclosure practices among terminally ill Muslim patients, examining how these factors shape palliative care delivery. <b>Objectives:</b> The primary objective of this review is to investigate the impact of non-disclosure practices on end-of-life care in Muslim populations, focusing on key themes that influence medical decision-making. Additionally, the review identifies ways in which Healthcare Provider (HCP) can navigate these culturally sensitive issues to enhance care. <b>Methods:</b> A comprehensive narrative review was conducted, utilizing articles from CINHAL, PsychINFO, Scopus, and PubMed databases published between 2009 and 2024. An initial search yielded 2025 articles. After applying inclusion and exclusion criteria, 12 studies were included for analysis. The SANRA guidelines for narrative reviews were followed, and the SPIDER framework was used for qualitative synthesis. <b>Results:</b> Of the 2041 articles initially retrieved, 2014 were excluded after screening, 8 were duplicates, and 7 full texts were excluded for not meeting the inclusion criteria. The final review included 12 studies. Three key themes emerged: (1) cultural, religious, and emotional factors driving requests for non-disclosure, (2) the prominent role of family in medical decision-making, and (3) healthcare provider communication challenges contributing to disparities in palliative care access. <b>Conclusion:</b> Non-disclosure practices present significant barriers to effective palliative care in Muslim communities. To improve care outcomes, culturally competent communication strategies and family-centered decision-making models are crucial.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091241303684"},"PeriodicalIF":0.0,"publicationDate":"2024-11-26","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142717790","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Factors that Facilitate Informal Advance Care Planning Conversations With Family: A Cross-Sectional Survey of Black Adults With Kidney Failure.","authors":"Marlena C Fisher, Nancy Perrin, Deidra C Crews, Nwamaka D Eneanya, Joseph J Gallo, Brianna E Hardy, Katie E Nelson, Loretta Owusu, Claire M Petchler, Martha Abshire Saylor, Marie T Nolan","doi":"10.1177/10499091241298280","DOIUrl":"https://doi.org/10.1177/10499091241298280","url":null,"abstract":"<p><p><b>Background:</b> Advance care planning in adults with kidney failure has been understudied and limited to written advance directives. Many Black adults prefer informal conversations with family, and yet this form of advance care planning is underexplored in research. In this study, we aimed to identify the multilevel factors that facilitate informal advance care planning with family among Black adults with kidney failure. <b>Methods:</b> Black adults with kidney failure were recruited using the electronic health record to identify prospective participants who met inclusion criteria from a metropolitan hospital in the Mid-Atlantic region of the United States from June 2021 to June 2022. Participants completed a survey capturing the personal, interpersonal, and structural level factors that facilitate informal advance care planning conversations with family, and sociodemographic characteristics. <b>Results:</b> The study included 301 respondents, 66% engaged in informal advance care planning and 37% completed an advance directive. Mean age was 56 years, 52% were female, 25% received a high school education or less. Illness acceptance (OR 1.07, <i>P</i> = 0.04) and emotional support (OR 1.44, <i>P</i> = 0.02) facilitated Informal advance care planning, as did having master's or doctoral level education (OR 2.37, <i>P</i> = 0.04). A recent hospitalization (OR 1.79, <i>P</i> = 0.04) and experience as a surrogate decision maker (OR = 1.76, <i>P</i> = 0.05) also facilitated Informal advance care planning. <b>Conclusions:</b> Informal advance care planning conversations occur more frequently than written directives among Black adults with kidney failure. Future interventions should consider cultural preferences by developing interventions that facilitate informal advance care planning conversations with family.</p>","PeriodicalId":94222,"journal":{"name":"The American journal of hospice & palliative care","volume":" ","pages":"10499091241298280"},"PeriodicalIF":0.0,"publicationDate":"2024-11-22","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142690192","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":0,"RegionCategory":"","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}