Pub Date : 2024-10-01DOI: 10.1186/s12904-024-01566-5
Abdi D Osman, Jocelyn Howell, Michael Yeoh, Louisa Lam, Daryl Jones, George Braitberg
Introduction: Advance Care Planning (ACP) refers to a process that includes Advance Care Directives (ACD) and Goals of Care (GOC), a practice widely used for over three decades. Following the findings of an audit and a cross-sectional study in 2019 and 2021 respectively, we implemented several educational and other interventional strategies aimed at enhancing staff awareness and emphasizing the importance of recognizing and documenting of ACD/GOC. The aim of this study was to evaluate the acknowledgement and use of ACD and GOC by Emergency Department (ED) staff following these interventions.
Method: We used a mixed methods approach, incorporating both observational and cross-sectional designs with reflexive thematic analysis. Data extraction for the observational study took place between 1st April and 30th June 2023 focusing on a target population of randomly sampled adults aged ≥ 65 years. Demographics and other ACD and GOC related patients' clinical data were collected. Data collection for the cross-sectional study occurred between 19th July and 13th September 2023 targeting all ED staff. Information gathered included demographics, awareness about ACD and GOC, including storage location and implementation, as well as knowledge of Medical Treatment decision Makers (MTDM), a jurisdictional term identifying a person legally appointed to make healthcare decisions on behalf of someone who lacks decision-making capacity and other Victorian State legislative requirements were collected.
Results: In the observational period, 22,335 patients attended the ED and 19% (n = 6546) qualified for inclusion from which a sample of 308 patients were randomly extracted. We found ACD documents were noted in the medical records of 6.5% of the sample, fewer than 8% identified in our previous study. There was no correlation between ACD record availability and age (p = 0.054; CI ranging from - 0.065 to 7.768). The response rate for the cross-sectional survey was 12% (n = 340) in contrast to earlier study with 28% (n = 476) respondents. Staff knowledge and familiarity with ACD was 25% and GOC 45%.
Conclusion: After implementing interventions in staff education and ACP awareness, we found that ACD documentation did not improve. However, GOC documentation increased in the context of heightened institutional awareness and integration into the Electronic Medical Records (EMR).
{"title":"Acknowledgement and use of advance care directives and goals of care by emergency department staff: a mixed method post intervention study.","authors":"Abdi D Osman, Jocelyn Howell, Michael Yeoh, Louisa Lam, Daryl Jones, George Braitberg","doi":"10.1186/s12904-024-01566-5","DOIUrl":"10.1186/s12904-024-01566-5","url":null,"abstract":"<p><strong>Introduction: </strong>Advance Care Planning (ACP) refers to a process that includes Advance Care Directives (ACD) and Goals of Care (GOC), a practice widely used for over three decades. Following the findings of an audit and a cross-sectional study in 2019 and 2021 respectively, we implemented several educational and other interventional strategies aimed at enhancing staff awareness and emphasizing the importance of recognizing and documenting of ACD/GOC. The aim of this study was to evaluate the acknowledgement and use of ACD and GOC by Emergency Department (ED) staff following these interventions.</p><p><strong>Method: </strong>We used a mixed methods approach, incorporating both observational and cross-sectional designs with reflexive thematic analysis. Data extraction for the observational study took place between 1st April and 30th June 2023 focusing on a target population of randomly sampled adults aged ≥ 65 years. Demographics and other ACD and GOC related patients' clinical data were collected. Data collection for the cross-sectional study occurred between 19th July and 13th September 2023 targeting all ED staff. Information gathered included demographics, awareness about ACD and GOC, including storage location and implementation, as well as knowledge of Medical Treatment decision Makers (MTDM), a jurisdictional term identifying a person legally appointed to make healthcare decisions on behalf of someone who lacks decision-making capacity and other Victorian State legislative requirements were collected.</p><p><strong>Results: </strong>In the observational period, 22,335 patients attended the ED and 19% (n = 6546) qualified for inclusion from which a sample of 308 patients were randomly extracted. We found ACD documents were noted in the medical records of 6.5% of the sample, fewer than 8% identified in our previous study. There was no correlation between ACD record availability and age (p = 0.054; CI ranging from - 0.065 to 7.768). The response rate for the cross-sectional survey was 12% (n = 340) in contrast to earlier study with 28% (n = 476) respondents. Staff knowledge and familiarity with ACD was 25% and GOC 45%.</p><p><strong>Conclusion: </strong>After implementing interventions in staff education and ACP awareness, we found that ACD documentation did not improve. However, GOC documentation increased in the context of heightened institutional awareness and integration into the Electronic Medical Records (EMR).</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"235"},"PeriodicalIF":2.5,"publicationDate":"2024-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11445853/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142362351","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":"Correction to: Readiness for advance care planning and related factors in the general population: a cross sectional study in Iran.","authors":"Ali Askari, Hosein Mohammadi Roshan, Nasim Abbaszadeh, Mahmood Salesi, Seyed Morteza Hosseini, Mobina Golmohammadi, Salman Barasteh, Omid Nademi, Razieh Mashayekh, Mohammad Hossein Sadeghi","doi":"10.1186/s12904-024-01553-w","DOIUrl":"10.1186/s12904-024-01553-w","url":null,"abstract":"","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"233"},"PeriodicalIF":2.5,"publicationDate":"2024-09-30","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11440902/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142330574","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}
Pub Date : 2024-09-28DOI: 10.1186/s12904-024-01562-9
Nagavalli Somasundaram, Halah Ibrahim, Ranitha Govindasamy, Nur Amira Binte Abdul Hamid, Simon Yew Kuang Ong, Lalit Kumar Radha Krishna
Background: Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF).
Methods: From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis.
Results: Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms.
Conclusion: Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care - ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession.
{"title":"Caring for terminally Ill patients: the impact on oncologists.","authors":"Nagavalli Somasundaram, Halah Ibrahim, Ranitha Govindasamy, Nur Amira Binte Abdul Hamid, Simon Yew Kuang Ong, Lalit Kumar Radha Krishna","doi":"10.1186/s12904-024-01562-9","DOIUrl":"https://doi.org/10.1186/s12904-024-01562-9","url":null,"abstract":"<p><strong>Background: </strong>Journeying with patients throughout their cancer trajectory and caring for them at the end of life can lead to emotional and moral distress in oncologists, negatively impacting their personal and professional identities. A better understanding of how transitions in care goals affect oncologists can shed light on the challenges faced and the support required. This study explored the impact of care transitions on oncologists' professional identity formation (PIF).</p><p><strong>Methods: </strong>From September to December 2023, semi-structured interviews were conducted with oncologists in a palliative care center in Singapore. The Ring Theory of Personhood (RToP) was used as a framework to capture the effects of experiences with patients transitioning from curative to palliative care on the oncologists' sense of self and identity. Data were analyzed using both inductive and deductive qualitative analysis.</p><p><strong>Results: </strong>Participants included six female and six male physicians, aged 30 to 53 years (mean 38 years), with an average of 9.75 years of experience as oncologists. The main domains identified were 1) challenges faced in transitioning patients to palliative care, 2) the impact of dealing with dying patients on oncologists, and 3) coping mechanisms.</p><p><strong>Conclusion: </strong>Oncologists experience self-doubt and moral distress as they manage transitions in care. The PIF of oncologists can be supported through reflection and introspection, peer support, and interventions to promote self-care - ultimately enabling them to make meaning of their experiences, renew family ties, and reaffirm their commitment to the profession.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"231"},"PeriodicalIF":2.5,"publicationDate":"2024-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11439311/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142330573","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}
Pub Date : 2024-09-28DOI: 10.1186/s12904-024-01564-7
Catherine E Mosher, Kathleen A Beck-Coon, Wei Wu, Ashley B Lewson, Patrick V Stutz, Linda F Brown, Qing Tang, Paul R Helft, Kristin Levoy, Susan E Hickman, Shelley A Johns
Background: Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes.
Methods: In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy.
Results: Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning.
Conclusions: A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing.
Trial registration: ClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007 .
{"title":"Mindfulness to enhance quality of life and support advance care planning: a pilot randomized controlled trial for adults with advanced cancer and their family caregivers.","authors":"Catherine E Mosher, Kathleen A Beck-Coon, Wei Wu, Ashley B Lewson, Patrick V Stutz, Linda F Brown, Qing Tang, Paul R Helft, Kristin Levoy, Susan E Hickman, Shelley A Johns","doi":"10.1186/s12904-024-01564-7","DOIUrl":"https://doi.org/10.1186/s12904-024-01564-7","url":null,"abstract":"<p><strong>Background: </strong>Patients with advanced cancer and family caregivers often use avoidant coping strategies, such as delaying advance care planning discussions, which contribute to deterioration in their quality of life. Mindfulness-based interventions have shown promise in improving quality of life in this population but have rarely been applied to advance care planning. This pilot trial examined the preliminary efficacy of a group-based Mindfulness to Enhance Quality of Life and Support Advance Care Planning (MEANING) intervention for patient-caregiver dyads coping with advanced cancer. Primary outcomes were patient and caregiver quality of life or well-being, and secondary outcomes included patient advanced care planning engagement (self-efficacy and readiness) and other psychological and symptom outcomes.</p><p><strong>Methods: </strong>In this pilot trial, dyads coping with advanced cancer were recruited from five oncology clinics in the midwestern U.S. and randomized to six weekly group sessions of a mindfulness intervention (n = 33 dyads) or usual care (n = 22 dyads). Outcomes were assessed via surveys at baseline, post-intervention, and 1 month post-intervention. All available data were included in the multilevel models assessing intervention efficacy.</p><p><strong>Results: </strong>Patients in the MEANING condition experienced significant increases in existential well-being and self-efficacy for advance care planning across follow-ups, whereas usual care patients did not. Other group differences in outcomes were not statistically significant. These outcomes included other facets of patient well-being, caregiver quality of life, patient readiness for advance care planning, caregiver burden, and patient and caregiver depressive symptoms, anxiety, sleep disturbance, cognitive avoidance, and peaceful acceptance of cancer. However, only MEANING patients showed moderate increases in psychological well-being across follow-ups, and MEANING caregivers showed moderate increases in quality of life at 1-month follow-up. Certain psychological outcomes, such as caregiver burden at 1-month follow-up, also showed moderate improvement in the MEANING condition. Patients in both conditions reported small to moderate increases in readiness to engage in advance care planning.</p><p><strong>Conclusions: </strong>A mindfulness-based intervention showed promise in improving quality-of-life and advance care planning outcomes in patients and caregivers coping with advanced cancer and warrants further testing.</p><p><strong>Trial registration: </strong>ClinicalTrials.gov NCT03257007. Registered 22 August 2017, https://clinicaltrials.gov/ct2/show/NCT03257007 .</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"232"},"PeriodicalIF":2.5,"publicationDate":"2024-09-28","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11439323/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142330576","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}
Background: The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study.
Methods: This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent.
Results: A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience).
Conclusion: Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs.
{"title":"Experiences of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care: a qualitative study.","authors":"Yanan Xu, Yahui Liu, Yubiao Kang, Danruo Wang, Yujie Zhou, Ligui Wu, Ling Yuan","doi":"10.1186/s12904-024-01559-4","DOIUrl":"https://doi.org/10.1186/s12904-024-01559-4","url":null,"abstract":"<p><strong>Background: </strong>The transition of family caregivers of patients with end-of-Life cancer receiving palliative care from hospital to home is a complex and challenging process. This phase of care involves not only the physical and psychological health of the patient but also the role adaptation and emotional support of the family caregivers. To gain a deeper understanding of the various experiences and feelings during this process, we conducted a qualitative study.</p><p><strong>Methods: </strong>This study employed a descriptive phenomenological research method. The interviews focused on the specific experiences, challenges faced, support received, and coping strategies of family caregivers of patients with end-of-life cancer during the transition from hospital to home palliative care. All data were treated with strict confidentiality, and recordings and transcriptions were made with the participants' consent.</p><p><strong>Results: </strong>A total of 15 family caregivers participated. Four main themes and nine sub-themes were identified: complex transition process (anxiety about uncertainty, resistance to transition), discontinuity in care (insufficient discharge guidance, lack of continuous communication mechanisms), post-discharge continuous care needs (need for home care knowledge and skills, social and emotional support, grief counselling and death education), and personal growth and gains (enhanced coping ability, increased psychological resilience).</p><p><strong>Conclusion: </strong>Family caregivers face numerous emotional, cognitive, practical, and social support challenges during the transition from hospital to home care. To improve the caregiving experience and quality of life, appropriate training and support should be provided to better meet the caregivers' needs.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"230"},"PeriodicalIF":2.5,"publicationDate":"2024-09-27","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11438011/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142330575","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}
Pub Date : 2024-09-23DOI: 10.1186/s12904-024-01563-8
Theresa Tenge, Shaylin Shahinzad, Stefan Meier, Manuela Schallenburger, Yann-Nicolas Batzler, Jacqueline Schwartz, Anja Coym, Johannes Rosenbruch, Mitra Tewes, Steffen T Simon, Carmen Roch, Ute Hiby, Christian Jung, Udo Boeken, Jan Gaertner, Martin Neukirchen
Background: The number of advanced heart failure patients with left ventricular assist devices (LVAD) is increasing. Despite guideline-recommendations, little is known about specialist palliative care involvement in LVAD-patients, especially in Europe. This study aims to investigate timing and setting of specialist palliative care in LVAD-patients.
Methods: We conducted a retrospective multicenter study in 2022. Specialist palliative care services in German LVAD-centers were identified and invited to participate. Forty adult LVAD-patients (mean age 65 years (SD 7.9), 90% male) from seven centers that received a specialist palliative care consultation during hospitalization were included.
Results: In 37 (67.3%) of the 55 LVAD-centers, specialist palliative care was available. The median duration between LVAD-implantation and first specialist palliative care contact was 17 months (IQR 6.3-50.3 months). Median duration between consultation and death was seven days (IQR 3-28 days). 65% of consults took place in an intensive/intermediate care unit with half of the patients having a Do-Not-Resuscitate order. Care planning significantly increased during involvement (advance directives before: n = 15, after: n = 19, p < 0.001; DNR before: n = 20, after: n = 28, p < 0.001). Symptom burden as assessed at first specialist palliative care contact was higher compared to the consultation requests (request: median 3 symptoms (IQR 3-6); first contact: median 9 (IQR 6-10); p < 0.001) with a focus on weakness, anxiety, overburdening of next-of-kin and dyspnea. More than 70% of patients died during index hospitalization, one third of these in a palliative care unit.
Conclusions: This largest European multicenter investigation of LVAD-patients receiving specialist palliative care shows a late integration and high physical and psychosocial symptom burden. This study highlights the urgent need for earlier integration to identify and address poorly controlled symptoms. Further studies and educational efforts are needed to close the gap between guideline-recommendations and the current status quo.
{"title":"Multicenter exploration of specialist palliative care in patients with left ventricular assist devices - a retrospective study.","authors":"Theresa Tenge, Shaylin Shahinzad, Stefan Meier, Manuela Schallenburger, Yann-Nicolas Batzler, Jacqueline Schwartz, Anja Coym, Johannes Rosenbruch, Mitra Tewes, Steffen T Simon, Carmen Roch, Ute Hiby, Christian Jung, Udo Boeken, Jan Gaertner, Martin Neukirchen","doi":"10.1186/s12904-024-01563-8","DOIUrl":"10.1186/s12904-024-01563-8","url":null,"abstract":"<p><strong>Background: </strong>The number of advanced heart failure patients with left ventricular assist devices (LVAD) is increasing. Despite guideline-recommendations, little is known about specialist palliative care involvement in LVAD-patients, especially in Europe. This study aims to investigate timing and setting of specialist palliative care in LVAD-patients.</p><p><strong>Methods: </strong>We conducted a retrospective multicenter study in 2022. Specialist palliative care services in German LVAD-centers were identified and invited to participate. Forty adult LVAD-patients (mean age 65 years (SD 7.9), 90% male) from seven centers that received a specialist palliative care consultation during hospitalization were included.</p><p><strong>Results: </strong>In 37 (67.3%) of the 55 LVAD-centers, specialist palliative care was available. The median duration between LVAD-implantation and first specialist palliative care contact was 17 months (IQR 6.3-50.3 months). Median duration between consultation and death was seven days (IQR 3-28 days). 65% of consults took place in an intensive/intermediate care unit with half of the patients having a Do-Not-Resuscitate order. Care planning significantly increased during involvement (advance directives before: n = 15, after: n = 19, p < 0.001; DNR before: n = 20, after: n = 28, p < 0.001). Symptom burden as assessed at first specialist palliative care contact was higher compared to the consultation requests (request: median 3 symptoms (IQR 3-6); first contact: median 9 (IQR 6-10); p < 0.001) with a focus on weakness, anxiety, overburdening of next-of-kin and dyspnea. More than 70% of patients died during index hospitalization, one third of these in a palliative care unit.</p><p><strong>Conclusions: </strong>This largest European multicenter investigation of LVAD-patients receiving specialist palliative care shows a late integration and high physical and psychosocial symptom burden. This study highlights the urgent need for earlier integration to identify and address poorly controlled symptoms. Further studies and educational efforts are needed to close the gap between guideline-recommendations and the current status quo.</p>","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"23 1","pages":"229"},"PeriodicalIF":2.5,"publicationDate":"2024-09-23","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11421205/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142308858","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}
Pub Date : 2024-09-17DOI: 10.1186/s12904-024-01558-5
Ngozi Idemili-Aronu, Tonia Chinyelu Onyeka, Uchechukwu Joel Okenwa, John Oluwaseyi Jemisenia, Ikechukwu Alex Okoli, John Olajide Olawepo, Echezona Edozie Ezeanolue
Women living with HIV (WLWH) in low- middle-income countries (LMICs) face increased mortality risks from comorbidities despite progress in antiretroviral therapy. Palliative care (PC) is vital for these patients, yet its integration in LMICs, such as Nigeria, is suboptimal due to unique challenges. This study investigated the knowledge, perceived barriers, and facilitators influencing PC integration into routine HIV care within healthcare (HC) settings. A cross-sectional survey was conducted among WLWH in twelve HC facilities throughout Nigeria. Data collection involved surveys focused on PC knowledge, attitudes, facilitators, and barriers. Logistic regression analyses were employed to examine the data. This study revealed significant gaps in knowledge and attitudes towards PC among HIV + women at NISA-MIRCs. Over 90% were unaware of PC services, but many saw its potential to offer hope (55%) and improve quality of life (56.5%). The key predictors of PC knowledge included education, occupation, religion, having fewer children, urban residence, type of residence, and having a high income (p < .05). Despite the willingness to access PC, barriers such as negative HC worker attitudes, perceived high cost, and limited decision autonomy could hinder integration. Facilitators included low-cost services, positive HCW attitudes, physician recommendations, and perceived necessity for personal well-being. Knowledge gaps, diverse attitudes, and significant barriers highlight the need for targeted PC interventions for WLWH. Tailoring educational programs, addressing cost barriers, and improving healthcare infrastructure are crucial to enhancing PC accessibility and quality. These findings can guide policymakers and HC practitioners toward more effective and inclusive care strategies.
尽管抗逆转录病毒疗法取得了进展,但中低收入国家(LMICs)的女性艾滋病病毒感染者(WLWH)因合并症而面临更高的死亡风险。姑息关怀(PC)对这些患者至关重要,但由于存在独特的挑战,在尼日利亚等低收入、中等收入国家,姑息关怀的整合效果并不理想。本研究调查了在医疗保健(HC)环境中将姑息治疗纳入常规 HIV 护理的相关知识、感知障碍和促进因素。研究人员对尼日利亚全国 12 家医疗机构中的 WLWH 进行了横断面调查。数据收集包括对 PC 知识、态度、促进因素和障碍的调查。采用逻辑回归分析法对数据进行了检验。这项研究揭示了尼日利亚艾滋病监测中心(NISA-MIRC)中感染艾滋病毒的妇女在个人护理知识和态度方面存在的巨大差距。超过 90% 的人不了解 PC 服务,但许多人认为 PC 有可能带来希望(55%)和改善生活质量(56.5%)。对 PC 知识的主要预测因素包括教育程度、职业、宗教信仰、子女较少、城市居民、居住地类型和高收入(p < .05)。尽管人们愿意使用个人护理服务,但人道协调员的消极态度、认为高昂的费用和有限的决策自主权等障碍可能会阻碍人们融入个人护理服务。促进因素包括低成本服务、医护人员的积极态度、医生的建议以及个人健康的必要性。知识差距、不同的态度和重大障碍凸显了对 WLWH 进行有针对性的 PC 干预的必要性。量身定制教育计划、解决成本障碍和改善医疗基础设施对于提高个人护理的可及性和质量至关重要。这些发现可以指导政策制定者和医疗保健从业人员制定更有效、更具包容性的护理策略。
{"title":"Knowledge, attitudes, and barriers: Palliative Care services for women with HIV in resource-limited settings","authors":"Ngozi Idemili-Aronu, Tonia Chinyelu Onyeka, Uchechukwu Joel Okenwa, John Oluwaseyi Jemisenia, Ikechukwu Alex Okoli, John Olajide Olawepo, Echezona Edozie Ezeanolue","doi":"10.1186/s12904-024-01558-5","DOIUrl":"https://doi.org/10.1186/s12904-024-01558-5","url":null,"abstract":"Women living with HIV (WLWH) in low- middle-income countries (LMICs) face increased mortality risks from comorbidities despite progress in antiretroviral therapy. Palliative care (PC) is vital for these patients, yet its integration in LMICs, such as Nigeria, is suboptimal due to unique challenges. This study investigated the knowledge, perceived barriers, and facilitators influencing PC integration into routine HIV care within healthcare (HC) settings. A cross-sectional survey was conducted among WLWH in twelve HC facilities throughout Nigeria. Data collection involved surveys focused on PC knowledge, attitudes, facilitators, and barriers. Logistic regression analyses were employed to examine the data. This study revealed significant gaps in knowledge and attitudes towards PC among HIV + women at NISA-MIRCs. Over 90% were unaware of PC services, but many saw its potential to offer hope (55%) and improve quality of life (56.5%). The key predictors of PC knowledge included education, occupation, religion, having fewer children, urban residence, type of residence, and having a high income (p < .05). Despite the willingness to access PC, barriers such as negative HC worker attitudes, perceived high cost, and limited decision autonomy could hinder integration. Facilitators included low-cost services, positive HCW attitudes, physician recommendations, and perceived necessity for personal well-being. Knowledge gaps, diverse attitudes, and significant barriers highlight the need for targeted PC interventions for WLWH. Tailoring educational programs, addressing cost barriers, and improving healthcare infrastructure are crucial to enhancing PC accessibility and quality. These findings can guide policymakers and HC practitioners toward more effective and inclusive care strategies.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"1 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142255868","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}
Pub Date : 2024-09-17DOI: 10.1186/s12904-024-01555-8
Narin Aker, Sarah Griffiths, Nuriye Kupeli, Rachael Frost, Pushpa Nair, Kate Walters, Lee Joshua Melo, Nathan Davies
Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions. Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups’ and carers’ access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals’ experiences. Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions.
{"title":"Experiences and access of palliative and end of life care for older people from minority ethnic groups: a scoping review","authors":"Narin Aker, Sarah Griffiths, Nuriye Kupeli, Rachael Frost, Pushpa Nair, Kate Walters, Lee Joshua Melo, Nathan Davies","doi":"10.1186/s12904-024-01555-8","DOIUrl":"https://doi.org/10.1186/s12904-024-01555-8","url":null,"abstract":"Many older people from minority ethnic groups experience inequalities towards the end of life, including barriers to accessing palliative care. With levels of international migration increasing, there is a need to understand these differences and consider the needs of minority ethnic groups in healthcare policies. This review aimed to map evidence on how older people from minority ethnic groups access and utilise palliative and end of life care, preferences for palliative and end of life care, experiences of palliative and end of life care, and how this varies between minority ethnic groups in different countries, and with different health conditions. Scoping review, following Joanna Briggs Institute (JBI) guidance. Searches of eight online databases (MEDLINE, Embase, Web of Science, CINAHL, PsycInfo, Assia, Scopus, and the Cochrane Library) and grey literature were undertaken in 2024. Qualitative sources that focused on older people from minority ethnic groups’ and carers’ access to and use of palliative and end of life care were included, as well as those focusing on healthcare professionals’ experiences. Twenty-three sources were included in the review, the majority of which were interview studies from the USA. Findings reflect a range of preferences, inequalities, facilitators and barriers to accessing palliative and end of life care, with themes relating to: (1) Knowledge of hospice and palliative care, (2) societal and structural issues, (3) language and health literacy, (4) migratory experiences, (5) trust in healthcare services and professionals, (6) religion and hope, and (7) cultural values. This review identified areas for healthcare providers to consider developing more culturally appropriate palliative and end of life care practice, including building trust and improving communication, sharing information, reducing language barriers, addressing stigma, and, if relevant, acknowledging the importance of culture and religion. Further qualitative research from an intersectional perspective, such as geographical location or socio-economic status, rather than race, ethnicity, and culture alone, is needed in more diverse geographical settings and on specific health conditions.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"16 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2024-09-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142255867","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}
Pub Date : 2024-09-12DOI: 10.1186/s12904-024-01551-y
Karolina Vlckova, Kristyna Polakova, Adam Houska, Marketa Zindulkova, Martin Loucka
Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process. This article describes results from a qualitative study with bereaved relatives focused on their experience with communication with physicians during the COVID-19 pandemic. Relatives lacked empathetic communication, they also experienced fear of getting infected and they tended to express understanding for the challenging circumstances faced by the healthcare staff.
{"title":"“I couldn’t say goodbye”: Thematic analysis of interviews with bereaved relatives who lost their loved ones during the COVID-19 pandemic","authors":"Karolina Vlckova, Kristyna Polakova, Adam Houska, Marketa Zindulkova, Martin Loucka","doi":"10.1186/s12904-024-01551-y","DOIUrl":"https://doi.org/10.1186/s12904-024-01551-y","url":null,"abstract":"Delivering serious news is usually challenging for healthcare professionals and the pandemic of COVID-19 and related restrictions brought additional challenges in this process. To explore the experience of bereaved relatives with receiving serious news from healthcare professionals during the pandemic COVID-19. A qualitative study using thematic analysis and a codebook approach of data collected in semi-structured interviews with bereaved relatives. Data were collected from July to August 2022 in person/via phone with bereaved relatives who lost their relatives during the pandemic (from March 2020 to March 2022). Participants were recruited using a convenience sample and snowball method through social media and through one university hospital palliative care unit that invited bereaved relatives of deceased patients treated at the unit to participate in this study. A total of 22 participants, consisting of 4 men and 18 women, were interviewed for this study. Most of the participants were sons or daughters of individuals who had died (5 grandchildren, 14 sons/daughters, 2 spouses, 1 great-niece). Six themes were identified: Burden caused by visit ban, Fear of COVID-19, Inappropriate behaviour and communication of healthcare professionals, High need for emotional support, Need for detailed and honest communication, Tendency to make excuses for mistakes and lapses by healthcare professionals. Delivering serious news during a pandemic was negatively influenced by a lack of contact with patients and a lack of support and empathetic communication with staff. Overcoming these circumstances can be achieved by frequent communication using various communication tools (such as videoconferences or phone calls), and maintaining empathy and honesty in the communication process. This article describes results from a qualitative study with bereaved relatives focused on their experience with communication with physicians during the COVID-19 pandemic. Relatives lacked empathetic communication, they also experienced fear of getting infected and they tended to express understanding for the challenging circumstances faced by the healthcare staff.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"15 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2024-09-12","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142175887","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}
Pub Date : 2024-09-11DOI: 10.1186/s12904-024-01556-7
Marcelle Miranda da Silva, Audrei Castro Telles, Cristina Lavareda Baixinho, Eunice Sá, Andreia Costa, Maria Adriana Pereira Henriques
Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals’ lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks’ response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. Health care professionals aim to increase patients’ time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term.
{"title":"Analyzing innovative policies and practices for palliative care in Portugal: a qualitative study","authors":"Marcelle Miranda da Silva, Audrei Castro Telles, Cristina Lavareda Baixinho, Eunice Sá, Andreia Costa, Maria Adriana Pereira Henriques","doi":"10.1186/s12904-024-01556-7","DOIUrl":"https://doi.org/10.1186/s12904-024-01556-7","url":null,"abstract":"Countries with formal policies for palliative care, and advanced and integrated practices in this field, such as Portugal, face challenges in achieving excellence in care, particularly in home-based assistance. Issues include care coordination among providers, confusion regarding the roles of each health care professional in the network, and a lack of monitoring and evaluation of actions. Our objective was to analyze the implementation of palliative care in primary health care in Portugal. We conducted a qualitative, descriptive, and exploratory study in Portugal involving health care professionals with experience in palliative care. The data were collected through semistructured interviews and focus groups between March and October 2023. Eighteen health care professionals participated. We used the Alceste software for lexicographic analysis. The research was authorized by an Ethics Committee. Four classes were identified; classes 1 and 2, comprising 77% of the corpus, addressed the study objectives. Participants highlighted inequitable access, strategic development plans with unattainable short-term goals; and low literacy. They emphasized the importance of legislation, professional training initiatives for generalist palliative care at home, and early referral. Home-based challenges included professionals’ lack of exclusive dedication, absence of 24/7 coverage, and unavailability of capable family caregivers. The networks’ response to hospital admissions and patient transitions from hospital to home, with access to the specialized team, was also inadequate. Health care professionals aim to increase patients’ time spent at home, reduce emergency department visits, and minimize hospitalizations by leveraging the resources of the national palliative care network. In addition to investments to sustain network implementation and legally guaranteed palliative care rights, the country must focus on measurable indicators for evaluating and monitoring actions, providing better guidance in the short, medium, and long term.","PeriodicalId":48945,"journal":{"name":"BMC Palliative Care","volume":"75 1","pages":""},"PeriodicalIF":3.1,"publicationDate":"2024-09-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142175888","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}