BMC Palliative Care最新文献

{"title":"Palliative care for patients with heart failure and family caregivers in rural Appalachia: a randomized controlled trial","authors":"Ubolrat Piamjariyakul, Angel Smothers, Kesheng Wang, Saima Shafique, Sijin Wen, Trisha Petitte, Stephanie Young, George Sokos, Carol E. Smith","doi":"10.1186/s12904-024-01531-2","DOIUrl":"https://doi.org/10.1186/s12904-024-01531-2","url":null,"abstract":"Heart failure (HF) is a debilitating disease with worsening symptoms and family caregiving burden. HF affects more than 8 million Americans. West Virginia has the highest HF death rate in the U.S. and limited healthcare services. This study tested whether the family HF palliative and end-of-life care intervention (FamPALcare) improved patient and caregiver outcomes at 3- and 6-month study endpoints. This study used a randomized controlled trial design. Patients with HF and their caregivers were randomly assigned together to the intervention (n = 21) or control (n = 18) group. The intervention included five telephone coaching sessions on the HF home, palliative, and end-of-life care. The outcome data collected at baseline and at 3 and 6 months were from the patients’ (a) HF-related health status and depression/anxiety scale scores; and from caregivers’ (b) caregiving burden and depression/anxiety scale scores; and (c) anonymous ratings on the 11-item FamPALcare helpfulness scale, completed by the intervention participants. The mean age of the patients was 65.66 (SD = 13.72) years, and 67% were White males. The mean age of the caregivers was 62.05 (SD = 13.14) years, and 77% were White females. Compared to the controls, patients in the intervention group had significantly greater scores for HF-related health status (p < .05) and lower depression/anxiety scores at 6 months, the study endpoint. The family caregivers in the intervention group had significantly lower scores on caregiving burden (p < .05) and depression/anxiety (p < .01) at 3 months. The mean helpfulness rating was M = 4.46 out of 5 (SD = 0.49). The FamPALcare intervention was found to be effective at improving patient HF-related health status and reducing caregiver burden and improving both patient and caregiver depression and anxiety scores. The FamPALcare HF intervention was found feasible and consistently delivered (fidelity). The FamPALcare intervention’s cost-effectiveness and helpfulness ratings information will be used to plan for subsequent clinical trials. ClinicalTrials.gov NCT04153890, Registered on 4 November 2019, https://clinicaltrials.gov/ct2/show/NCT04153890 .","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141883332","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Experiences with a national team-based learning program for advance care planning in pediatric palliative care.","authors":"Marijanne Engel, Jurrianne C Fahner, Marije P Hennus, Marijke C Kars","doi":"10.1186/s12904-024-01515-2","DOIUrl":"10.1186/s12904-024-01515-2","url":null,"abstract":"<p><strong>Background: </strong>Advance Care Planning (ACP) enables patients and relatives to define and share values, goals and preferences for future medical treatment and care. The IMplementing Pediatric Advance Care Planning Toolkit (IMPACT), developed in the Netherlands, is a method for conducting ACP in pediatric palliative care. Healthcare professionals who were trained to use IMPACT, indicated their need for ongoing support to practice ACP communication skills optimally over time. Therefore, we developed a team-based learning program aimed at teaching participants how to transfer knowledge on ACP, continue practicing ACP communication skills and reflect on ACP conversations within their own team context. The aim of this study was to evaluate the program's transfer of knowledge as well as the professionals' experience and team reflection on ACP.</p><p><strong>Methods: </strong>A one-day IMPACT train-the-trainer course was developed and a selection of healthcare professionals (facilitators) from pediatric palliative care teams (PPCTs) from all seven Dutch university hospitals and the specialized Center for Pediatric Oncology were invited to participate. Hereafter, facilitators were asked to transfer their course-acquired knowledge to their team members (learners) by organizing two coaching-on-the-job sessions. A mixed-methods design, combining questionnaires and field notes, was used to evaluate the level of knowledge transfer and team reflection achieved.</p><p><strong>Results: </strong>Eighteen healthcare professionals in the role of facilitator participated in the train-the-trainer course. In seven PPCTs one (n = 3) or two (n = 4) coaching-on-the-job session(s) took place, attended by 29 and 17 learners, respectively. In the questionnaires, 11 facilitators indicated that they had to some extent transferred acquired knowledge to their team members as intended. Sixteen out of 21 learners who participated in at least one coaching-on-the-job session, reported (somewhat) increased self-confidence for conducting ACP conversations. The reported main strength of the program was practicing with/learning from colleagues whereas dealing with workload and variation in existing ACP skills within PPCTs need more attention.</p><p><strong>Conclusions: </strong>The newly developed team-based learning program resulted in intended transfer of knowledge and methodical reflection on ACP in coaching-on-the-job sessions in most participating PPCTs. Planning coaching-on-the-job sessions regarding ACP in pediatric palliative care with multiple healthcare professionals is challenging and needs more emphasis in the training.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11297680/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141879716","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advancing the integration of biosignal-based automated pain assessment methods into a comprehensive model for addressing cancer pain","authors":"Marco Cascella, Piergiacomo Di Gennaro, Anna Crispo, Alessandro Vittori, Emiliano Petrucci, Francesco Sciorio, Franco Marinangeli, Alfonso Maria Ponsiglione, Maria Romano, Concetta Ovetta, Alessandro Ottaiano, Francesco Sabbatino, Francesco Perri, Ornella Piazza, Sergio Coluccia","doi":"10.1186/s12904-024-01526-z","DOIUrl":"https://doi.org/10.1186/s12904-024-01526-z","url":null,"abstract":"Tailoring effective strategies for cancer pain management requires a careful analysis of multiple factors that influence pain phenomena and, ultimately, guide the therapy. While there is a wealth of research on automatic pain assessment (APA), its integration with clinical data remains inadequately explored. This study aimed to address the potential correlations between subjective and APA-derived objectives variables in a cohort of cancer patients. A multidimensional statistical approach was employed. Demographic, clinical, and pain-related variables were examined. Objective measures included electrodermal activity (EDA) and electrocardiogram (ECG) signals. Sensitivity analysis, multiple factorial analysis (MFA), hierarchical clustering on principal components (HCPC), and multivariable regression were used for data analysis. The study analyzed data from 64 cancer patients. MFA revealed correlations between pain intensity, type, Eastern Cooperative Oncology Group Performance status (ECOG), opioids, and metastases. Clustering identified three distinct patient groups based on pain characteristics, treatments, and ECOG. Multivariable regression analysis showed associations between pain intensity, ECOG, type of breakthrough cancer pain, and opioid dosages. The analyses failed to find a correlation between subjective and objective pain variables. The reported pain perception is unrelated to the objective variables of APA. An in-depth investigation of APA is required to understand the variables to be studied, the operational modalities, and above all, strategies for appropriate integration with data obtained from self-reporting. This study is registered with ClinicalTrials.gov, number (NCT04726228), registered 27 January 2021, https://classic.clinicaltrials.gov/ct2/show/NCT04726228?term=nct04726228&draw=2&rank=1 ","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":3.1,"publicationDate":"2024-08-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141883248","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"The CAREPAL-8: a short screening tool for multidimensional family caregiver burden in palliative care.","authors":"Anneke Ullrich, Corinna Bergelt, Gabriella Marx, Anne Daubmann, Gesine Benze, Julia Heine, Lisa-Marie Dickel, Feline Wowretzko, Youyou Zhang, Carsten Bokemeyer, Friedemann Nauck, Karin Oechsle","doi":"10.1186/s12904-024-01480-w","DOIUrl":"10.1186/s12904-024-01480-w","url":null,"abstract":"<p><strong>Background: </strong>Family caregivers of terminally ill and dying people do not only experience varying levels but also different dimensions of caregiver-related strain and burden. The aim of the study was to develop a short multidimensional screening tool for the detection of burden in family caregivers in palliative care.</p><p><strong>Methods: </strong>Family caregivers of cancer patients newly admitted to specialist inpatient palliative care (N = 232) completed questionnaires on psychological burden, quality of life, social support and need fulfillment. A latent class mixture model was used to identify discrete classes of family caregivers related to their multidimensional caregiver burden. Multinomial logistic regression analyses were performed to identify the most predictive items from a set of established questionnaires.</p><p><strong>Results: </strong>Four latent classes of family caregivers were identified: Currently stable caregivers (37%), Caregivers with unmet needs (20%), Psychologically burdened caregivers (30%), and High-risk caregivers (13%). Each of these classes describes a different risk profile of multidimensional family caregiver burden, although family caregivers exhibit high levels of distress across all classes. From a set of 48 items, we identified eight items that predicted the class membership best. These items represent the items of the novel multidimensional screening tool: The 8-item Screening Tool for Family Caregiver Burden in Palliative Care (CAREPAL-8). Except for social support, the items maintained fidelity to the conceptualization of multidimensional caregiver burden used in this study. A preliminary classification system was developed, which has yet to be validated.</p><p><strong>Conclusions: </strong>This study represents the first step in the establishment of a practical, self-administered screening tool that might help healthcare providers to tailor caregiver care according to their burden in daily practice. Brevity of the 8-item tool might facilitate its use in routine clinical care.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-02","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295689/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141879717","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Developing research priorities for palliative care in Colombia: a priority setting partnership approach.","authors":"Tracey McConnell, Cindy V Mendieta, Esther de Vries, Jose A Calvache, Gillian Prue, Sam Ahmedzai, Joanne Reid","doi":"10.1186/s12904-024-01534-z","DOIUrl":"10.1186/s12904-024-01534-z","url":null,"abstract":"<p><strong>Background: </strong>A recent Lancet commission called for more research on palliative care in low- and middle-income (LMIC) countries such as Colombia. A research priority setting approach has been recommended by The Global Forum for Health Research to address the huge gap in research output between LMIC and high-income countries, with influential health service bodies recommending the active involvement of non-research expert stakeholders in establishing research priorities to address service user needs.</p><p><strong>Method: </strong>Priority setting partnership (PSP) following the four stages of the James Lind Alliance methodology; establishing the partnership, identifying evidence uncertainties, refining questions and uncertainties, and prioritization. Data from MS forms were analysed using descriptive statistics.</p><p><strong>Results: </strong>A total of 33 stakeholders attended an online PSP workshop and completed the Mentimeter exercise in Microsoft Teams. A total of 48 attended the subsequent in person prioritisation exercise in urban Bogota (n = 22) and rural Popayan (n = 25). The stakeholders were a diverse group of health professionals (physicians, medical students, nurses, dentists, physiotherapists, nutritionist, occupational and speech therapists), financial and administrative staff and patients with life-limiting illness and caregivers. Top research priorities included patient and caregiver needs, service provider education and training, and better integration of palliative care with cancer and non-cancer services. The key challenges included a lack of interest in palliative care research, along with funding, time and resource constraints. Key solutions included collaboration across disciplines and settings, highlighting benefits of palliative research to help secure adequate resources, and multicentre, mixed method research, with patient involvement from the research development stage.</p><p><strong>Conclusion: </strong>The findings of this PSP should be disseminated among palliative care associations worldwide to inform international multicentre studies, and among governmental and nongovernmental organisations that promote research in Colombia. A focus on patient and family caregiver palliative care needs in Colombia should be prioritised.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-08-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11295305/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141876448","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Social support resources in adolescents and young adults with advanced cancer: a qualitative analysis.","authors":"Nancy Lau, Angela Steineck, Casey Walsh, Kaitlyn M Fladeboe, Joyce P Yi-Frazier, Abby R Rosenberg, Krysta Barton","doi":"10.1186/s12904-024-01527-y","DOIUrl":"10.1186/s12904-024-01527-y","url":null,"abstract":"<p><strong>Purpose: </strong>Adolescents and Young Adults (AYAs) with cancer are an at-risk group with unique palliative and supportive care needs. Social support in AYAs with cancer is associated with better coping, quality of life, and psychosocial well-being. Here, we extend existing research to examine the sources and types of support received by AYAs with advanced cancer.</p><p><strong>Methods: </strong>AYAs participated in a semi-structured, 1:1 interview on communication and psychosocial support needs. The present analysis focused on social support experiences for AYAs with advanced cancer. Directed content analysis was used to develop the codebook. Established social support constructs provided a coding framework. We presented our qualitative findings as a code frequency report with quantified frequency counts of all \"source of support\" and \"type of support\" codes. We assigned a global \"sufficiency of support code\" to each AYA.</p><p><strong>Results: </strong>We interviewed 32 AYAs with advanced cancer (Mage = 18, SDage = 3.2, 41% female). Most AYAs identified family (namely, caregivers) as their primary source of support and stated that family universally provided all types of support: emotional, informational, instrumental, and social companionship. They received informational and emotional support from clinicians, and received emotional support and social companionship from healthy peers, cancer peers, and their existing community. One-third of participants were coded as having \"mixed support\" and described a lack of support in some domains.</p><p><strong>Conclusion: </strong>AYAs with advanced cancer described caregivers as their universal source of support, and that other support sources provided support for specific needs. Future research should continue to evaluate social support needs and family-based palliative and supportive care interventions to bolster social support resources in this high-risk group.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-31","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11290203/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141861356","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Nurses' experiences of ethical challenges concerning thirst in dying patients in specialist palliative care: a qualitative study.","authors":"Maria Friedrichsen, Caroline Lythell, Micha Milovanovic, Nana Waldréus, Hans Thulesius, Tiny Jaarsma, Pier Jaarsma, Christel Hedman, Anne Söderlund Schaller","doi":"10.1186/s12904-024-01519-y","DOIUrl":"10.1186/s12904-024-01519-y","url":null,"abstract":"<p><strong>Aim: </strong>To describe nurses' experiences of ethical challenges in relation to thirst in terminally ill patients in specialist palliative care units.</p><p><strong>Research design: </strong>A qualitative, reflexive thematic design with an inductive analysis was used.</p><p><strong>Participants and research context: </strong>Eighteen qualitative interviews with nurses working in six different specialist palliative care units in different hospitals in Sweden were conducted. The interviews were transcribed verbatim and analysed with a reflexive thematic analysis.</p><p><strong>Results: </strong>This study identified four themes that reflect ethical challenges experienced by nurses in the palliative care regarding thirst: Harmful infusions interfere with peaceful dying; conflict between tradition and personal experience; What is the right intervention to quench thirst? and; Lack of standard procedures, competence and interest among team members.</p><p><strong>Conclusion: </strong>Palliative care nurses experience a number ethical challenges in relation to thirst in dying patients. The main challenge is the provision of fluids to dying patients via artificial infusions, which nurses struggle with, as they do not want to interfere with a peaceful dying process.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11290186/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141856905","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Advance directives in amyotrophic lateral sclerosis - a systematic review and meta-analysis.","authors":"Anne Lisa Mangal, Martin Mücke, Roman Rolke, Iris Appelmann","doi":"10.1186/s12904-024-01524-1","DOIUrl":"10.1186/s12904-024-01524-1","url":null,"abstract":"<p><strong>Background: </strong>Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease of the upper and lower motoneuron. It is associated with a life expectancy of 2-4 years after diagnosis. Individuals experience paralysis, dysphagia, respiratory failure and loss of communicative function, rendering advance care planning (ACP) critically important. This systematic review primarily aimed to internationally compare the application of advance directives (AD) and ACP in ALS. Its secondary aim was to identify ACP preferences, identify fields for future research and to generate recommendations for improving patient care through ACP.</p><p><strong>Methods: </strong>We conducted a systematic literature review and meta-analysis. Five electronic databases (Embase, Medline, Scopus, PsycInfo and CENTRAL) were searched for qualitative and quantitative primary literature from 1999 to 2024. Cross-references were used to identify additional publications. Study selection was performed based on inclusion criteria. Number and content of AD were extracted systematically. After statistical analysis consecutive meta-analysis was performed for international differences and changes over time. Quality assessment of studies was performed using the MMAT (Mixed Methods Appraisal Tool). PROSPERO Registration (June 07, 2021) : CRD42021248040.</p><p><strong>Results: </strong>A total of 998 records was screened of which 26 were included in the synthesis. An increase in publication numbers of 88.9% was observed from 1999 to 2024. Results regarding use and content of AD were heterogeneous and international differences were detected. AD were signed in 60.4% of records (1,629 / 2,696 patients). The number of AD decreased over time when separating the review period in two decades (1st 1999-2011: 78% vs. 2nd 2012-2024: 42%). Study quality was superior in qualitative and mixed method designs compared to quantitative studies.</p><p><strong>Conclusion: </strong>Further prospective studies should include detailed analyses on preferences regarding ventilation and artificial nutrition in ALS and should encompass countries of the global south. Despite the complexity of ACP with regard to individual patient needs, ACP should be part of each individual support plan for ALS patients and should specifically comprise a discussion on the preferred place of death. The available disease-specific AD documents should be preferred.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11285133/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141793849","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Sexual health-a topic for cancer patients receiving oncological treatment with palliative intent.","authors":"Claudia Schmalz, Anne S Oberguggenberger, Eva Nagele, Brigitte Bliem, Anne Lanceley, Andy Nordin, Karin Kuljanic, Pernille T Jensen, Vesna Bjelic-Radisic, Alexander Fabian, Juan I Arraras, Chie Wei-Chu, Carien L Creutzberg, Razvan Galalae, Hilde Toelen, Kristin Zimmermann, Anna Costantini, Thierry Almont, Samantha Serpentini, Ligita Paskeviciute Frøding, Ingvild Vistad, Krzysztof A Tomaszewski, Elisabeth Inwald, Elfriede Greimel","doi":"10.1186/s12904-024-01513-4","DOIUrl":"10.1186/s12904-024-01513-4","url":null,"abstract":"<p><strong>Objectives: </strong>Sexuality is an important dimension of health-related quality of life (HRQOL) in cancer patients. Studies evidence that most patients report impairments of their sexual health related to their disease or its treatment. The Quality of Life Group of the European Organization for the Research and Treatment of Cancer (EORTC) developed a patient reported outcome measure assessing multidimensional aspects of sexual health. The validation study for this instrument revealed heterogenous results for patients in palliative oncological treatment. The aim of this secondary analyses is to examine differences in patient related sexual health outcomes between palliative patients with good performance status (GPS) and those with poor performance status (PPS).</p><p><strong>Methods: </strong>In this observational cohort study, self-reported sexual health issue scores were compared between the two groups of patients in palliative oncological treatment with GPS vs PPS status.</p><p><strong>Results: </strong>Patients with GPS experienced significantly more sexual satisfaction than patients with PPS (p = 0.015). They reported significantly more treatment effects on their sexual activity (p = 0.005) and suffer more from decreased libido (p = 0.008). Patients with PPS reported significantly more fatigue (p = 0.03) and regarded preservation of sexual activity of higher importance than did patients with GPS (p = 0.049).</p><p><strong>Conclusions: </strong>Our study demonstrates the importance of sexuality for patients in palliative oncological treatment, especially for those with limited performance status. Considering the patients´ perspective, sexual health reaches beyond physical functioning. Patients in a palliative phase of disease report high levels of psychosexual problems while sexual performance deteriorates. Sexuality is an important aspect of HRQOL for these patients, needs to be addressed by health care providers and sensitively integrated into palliative care plans.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11285330/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141793871","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}

{"title":"Implementation of a hospital-based end-of-life and bereavement care program in a latin American middle-income country. A source of light and compassion in the midst of cloudy times.","authors":"Ximena Garcia-Quintero, Eddy Carolina Pedraza, María Isabel Cuervo-Suarez, Isabel Correa, Justin N Baker, Michael J McNeil","doi":"10.1186/s12904-024-01522-3","DOIUrl":"10.1186/s12904-024-01522-3","url":null,"abstract":"<p><strong>Background: </strong>The death of a child is one of the most devastating events a family can face, resulting in significant physical and psychosocial morbidity. Bereavement support programs have been developed in high-income contexts to address this need. However, little is known about implementing bereavement programs in low-and middle-income countries (LMICs). Here, we describe the implementation of a bereavement program for parents whose children died due to cancer or other catastrophic illnesses.</p><p><strong>Methods: </strong>We conducted a retrospective analysis to describe the implementation of a hospital-based End of Life (EoL) care and bereavement program. This program was developed in several stages, including an assessment of bereaved families, development program guidelines, staff training, piloting of the program, refinement, and standardization. The program was developed between 2019 and 2021 in a nonprofit, teaching hospital and referral center for southwestern Colombia.</p><p><strong>Results: </strong>Several tools were developed as key components of the bereavement program: a virtual bereavement course; guidance for EoL and bereavement communication and care, memory making, and follow-up calls; a condolence letter template, and group support workshops. A total of 956 healthcare professionals were trained, 258 follow-up calls to bereaved parents were made, 150 individual psychological follow-ups to parents with complicated grief occurred, 79 condolence letters were sent, and 10 support group workshops were carried out. Challenges were identified and overcome, such as limited resources and staff, and cultural perceptions of death. In 2021, this program received an award by the hospital as the Best Strategy to Humanize Healthcare.</p><p><strong>Conclusions: </strong>This study highlights the feasibility of developing and implementing EoL and bereavement care programs for parents and families within hospitals in LMICs. Lack of resources, staff, and training are some of the identified challenges to implementation. Utilizing methodological tools allows us to identify facilitator factors and deliverable outcomes of our EoL and bereavement program. This model provides a valuable framework for resource-limited settings.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":null,"pages":null},"PeriodicalIF":2.5,"publicationDate":"2024-07-29","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11285602/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141793870","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":2,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}