Journal of Palliative Care最新文献

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Development of a Palliative Care Approach for Primary Progressive Aphasia: My Experience as a Person Living With This Rare Disorder. 原发性进行性失语症的姑息治疗方法的发展:我作为一个患有这种罕见疾病的人的经历。
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 DOI: 10.1177/08258597211026711
Joanne T Douglas
{"title":"Development of a Palliative Care Approach for Primary Progressive Aphasia: My Experience as a Person Living With This Rare Disorder.","authors":"Joanne T Douglas","doi":"10.1177/08258597211026711","DOIUrl":"https://doi.org/10.1177/08258597211026711","url":null,"abstract":"<p><p>Frontotemporal disorders are a group of rare young-onset dementias for which there is no cure, nor is there any way to slow the underlying progressive brain degeneration. To date those affected have typically received very little, if any, follow-up care after diagnosis, particularly in the early stages of their disease. I have received a clinical diagnosis, supported by imaging, of primary progressive aphasia, a form of frontotemporal degeneration characterized in the initial phase by progressive impairment of language ability. From the onset, I have been fortunate to receive excellent ongoing palliative care from a multidisciplinary team, some of whom had never previously seen anyone with this disorder. My quality of life has been enhanced by an evolving range of creative strategies and adaptations targeted to my deficits as they have arisen. In this paper, I discuss my experience of the process underlying this personalized plan, which serves as a paradigm for the development of novel palliative care approaches for people living with rare disorders, both neurodegenerative diseases and other conditions.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/08258597211026711","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9783958","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
Specialist Palliative Care and Dementia: Staff Challenges and Learning Needs. 姑息关怀与痴呆症专科:工作人员的挑战和学习需求。
IF 1.3 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 Epub Date: 2023-06-21 DOI: 10.1177/08258597231180966
S J Currie, C Curtin, S Timmons
{"title":"Specialist Palliative Care and Dementia: Staff Challenges and Learning Needs.","authors":"S J Currie, C Curtin, S Timmons","doi":"10.1177/08258597231180966","DOIUrl":"10.1177/08258597231180966","url":null,"abstract":"<p><p><b>Objective:</b> This study explored the perspectives of specialist palliative care (SPC) teams in Ireland, in relation to personal learning needs and education regarding dementia care. <b>Methods:</b> This mixed-methods study involved a survey and focus group. SPC staff were recruited through a professional palliative care society and via hospices in 4 regions. Survey items included challenges in clinical care, personal learning needs, and preferred modes of educational delivery. Quantitative data analysis was descriptive; open-answer survey questions and the focus group transcript underwent thematic analysis. <b>Results:</b> In total, 76 staff completed surveys and rated the following as most challenging: timely access to community agency and specialist support; and managing the needs of people with dementia (PwD). Respondents volunteered additional challenges around the timing/duration of SPC involvement, prognostication, and inadequate knowledge of local services. Staff ranked learning needs as highest in: nonpharmacological management of noncognitive and cognitive symptoms; differentiation of dementia subtypes; and pharmacological management of cognitive symptoms. The focus group (n = 4) gave deeper perspectives on these topics. Overall, 79.2% of staff preferred formal presentations by dementia-care specialists and 76.6% preferred e-learning. <b>Conclusion:</b> Several dementia-care challenges and learning needs are identified by SPC staff, as above. These can inform the design and delivery of tailored education programs for SPC staff. There is also a need for closer working between dementia services and SPC services to provide integrated, holistic care for PwD. One aspect of achieving this is greater awareness of local dementia-care services among SPC staff, and vice versa.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10350715/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9820961","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Nationwide Survey on Caregiver Burden When Supporting Terminal Cancer Patients with Dementia: Bereaved Family Members' Perspective. 全国癌症晚期痴呆患者护理负担调查:丧偶家属的观点
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 DOI: 10.1177/08258597231169625
Ayumi Takao, Harue Arao, Sena Yamamoto, Miwa Aoki, Katsuyasu Kouda, Tatsuya Morita, Yoshiyuki Kizawa, Satoru Tsuneto, Yasuo Shima, Kento Masukawa, Mitsunori Miyashita
{"title":"Nationwide Survey on Caregiver Burden When Supporting Terminal Cancer Patients with Dementia: Bereaved Family Members' Perspective.","authors":"Ayumi Takao,&nbsp;Harue Arao,&nbsp;Sena Yamamoto,&nbsp;Miwa Aoki,&nbsp;Katsuyasu Kouda,&nbsp;Tatsuya Morita,&nbsp;Yoshiyuki Kizawa,&nbsp;Satoru Tsuneto,&nbsp;Yasuo Shima,&nbsp;Kento Masukawa,&nbsp;Mitsunori Miyashita","doi":"10.1177/08258597231169625","DOIUrl":"https://doi.org/10.1177/08258597231169625","url":null,"abstract":"<p><p><b>Objective:</b> The prevalence of dementia and cancer has increased in recent years. The presence of dementia complicates the care of terminal cancer patients and affects their family caregivers. However, palliative care research seldom focuses on the family caregivers of patients with terminal cancer and dementia. This study aimed to evaluate the degree and factors of caregiver burden in cancer patients with dementia who died in hospice palliative care units. <b>Methods:</b> A nationwide cross-sectional survey was conducted among bereaved family members of patients with cancer who died in palliative care units. An anonymous self-report questionnaire was sent to bereaved family members, and they were asked if they were aware of the diagnosis of dementia. The short version of the Caregiver Consequence Inventory was used to measure caregiver burden. <b>Results:</b> The analysis included 670 bereaved family members. Of these, 83 (12.4%) were bereaved family members of terminal cancer patients with dementia. The caregiver burden was statistically significantly higher (3.61 ± 1.58 vs 3.22 ± 1.47; p < 0.036) among family caregivers of terminal cancer patients with dementia. Longer anti-cancer treatment duration (odd ratio, 4.63), poor mental and physical health of family caregivers (odds ratio, 2.05 and 2.20, respectively), pain (odd ratio, 1.72), and dyspnea (odds ratio, 1.67) were contributing factors for caregiver burden. <b>Conclusions:</b> Family caregivers of terminal cancer patients with dementia require care that considers the characteristics of the two serious diseases. Considering the goal of anti-cancer treatment and symptom relief may be a useful strategy for reducing caregiver burden.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10166771","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Cocreating Meaning Through Expressive Writing and Reading for Cancer Caregivers. 癌症护理人员通过表达性写作和阅读共同创造意义。
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 DOI: 10.1177/0825859719871538
Yvonne W Leung, Marta M Maslej, Clara Ho, Shima Razavi, Paul Uy, Mehr-Afarin Hosseini, Jonathan Avery, Gary Rodin, Allan Peterkin
{"title":"Cocreating Meaning Through Expressive Writing and Reading for Cancer Caregivers.","authors":"Yvonne W Leung,&nbsp;Marta M Maslej,&nbsp;Clara Ho,&nbsp;Shima Razavi,&nbsp;Paul Uy,&nbsp;Mehr-Afarin Hosseini,&nbsp;Jonathan Avery,&nbsp;Gary Rodin,&nbsp;Allan Peterkin","doi":"10.1177/0825859719871538","DOIUrl":"https://doi.org/10.1177/0825859719871538","url":null,"abstract":"<p><strong>Purpose: </strong>Caregivers of patients with cancer cope with socioemotional challenges, which can adversely affect their well-being. We developed an intervention, expressive writing and reading (EWR), to promote emotional processing and social connectedness among caregivers. In a single-arm pilot study, we assessed its feasibility and perceived usefulness.</p><p><strong>Methods: </strong>Caregivers participated in weekly 1.5-hour EWR workshops offered over 20 weeks. After 4 sessions, they completed semistructured interviews, which were analyzed using qualitative descriptive analysis.</p><p><strong>Findings: </strong>Of 65 caregivers approached, 25 were eligible, 18 consented, and 9 (50%) caregivers completed at least 4 workshops and the interview. Their responses revealed 3 themes: \"inner processing,\" \"interpersonal learning,\" and \"enhanced processing and preparedness.\" Perceived benefits of EWR included emotional and cognitive processing (individual and collaborative), learning from the emotions and experiences of other caregivers, and preparing for upcoming challenges.</p><p><strong>Conclusions: </strong>Expressive writing and reading can be a safe and cost-effective supportive intervention for caregivers of patients with cancer.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://sci-hub-pdf.com/10.1177/0825859719871538","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9772368","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 7
Early Impacts of COVID-19 on Select Hospices: Operations, Care Delivery, and Service Utilization. COVID-19对选定临终关怀医院的早期影响:运营、护理提供和服务利用。
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 DOI: 10.1177/08258597221105149
Lisa R Shugarman, Lindsay McMillan, Hayley Mitchell, Komal Shah, Ted Kirby, Richard McManus, Katherine Woods, Shannon L Landefeld
{"title":"Early Impacts of COVID-19 on Select Hospices: Operations, Care Delivery, and Service Utilization.","authors":"Lisa R Shugarman,&nbsp;Lindsay McMillan,&nbsp;Hayley Mitchell,&nbsp;Komal Shah,&nbsp;Ted Kirby,&nbsp;Richard McManus,&nbsp;Katherine Woods,&nbsp;Shannon L Landefeld","doi":"10.1177/08258597221105149","DOIUrl":"https://doi.org/10.1177/08258597221105149","url":null,"abstract":"<p><strong>Objective: </strong>The COVID-19 public health emergency (PHE) has important implications for health care service delivery. Little is understood about how the PHE impacted community-based hospice providers and service delivery to hospice-eligible beneficiaries. The aim of this study was to describe hospice response to the PHE and correlated impacts on beneficiary receipt of hospice support services delivered to hospice-eligible beneficiaries participating in the Centers for Medicare & Medicaid Services (CMS) Medicare Care Choices Model (MCCM), a national model testing the provision of certain hospice-like supportive services with concurrent usual care among seriously ill, community-residing Medicare beneficiaries that have not elected to receive hospice care.</p><p><strong>Methods: </strong>We employed descriptive analysis using concurrent qualitative and quantitative data sources, consisting of provider surveys, beneficiary-level encounter data submitted by hospices, and Medicare administrative claims describing beneficiary service utilization. The sample included both hospice providers (N = 82) and beneficiaries (N = 2294) voluntarily participating in MCCM.</p><p><strong>Results: </strong>Nearly all participating MCCM hospices adopted operational changes to address their staff and beneficiaries' safety during the COVID-19 PHE. We report changes to service delivery, including declines in total encounters as well as service modality, and the types of services provided.</p><p><strong>Conclusions: </strong>While the analyses reported indicate that seriously ill Medicare beneficiaries participating in MCCM were directly impacted by the PHE, we are still unclear whether changes in the service modality and encounters by provider type and the decline in average service counts per beneficiary are driven more by hospices or by beneficiary decisions to minimize exposure. Future research should attempt to disentangle these factors.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9168408/pdf/10.1177_08258597221105149.pdf","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"10181490","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 1
Perception of Nurses' Knowledge about Palliative Care in West Bank/ Palestine: Levels and Influencing Factors. 西岸/巴勒斯坦护士对姑息治疗知识的认知:水平及影响因素
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 DOI: 10.1177/08258597221133958
Dalia Toqan, Malakeh Z Malak, Ahmad Ayed, Shaher H Hamaideh, Rasmieh Al-Amer
{"title":"Perception of Nurses' Knowledge about Palliative Care in West Bank/ Palestine: Levels and Influencing Factors.","authors":"Dalia Toqan,&nbsp;Malakeh Z Malak,&nbsp;Ahmad Ayed,&nbsp;Shaher H Hamaideh,&nbsp;Rasmieh Al-Amer","doi":"10.1177/08258597221133958","DOIUrl":"https://doi.org/10.1177/08258597221133958","url":null,"abstract":"<p><p><b>Objective:</b> Healthcare professionals particularly nurses should be professionally prepared with knowledge about the standards of palliative care and their roles in providing palliative care. Nurses' knowledge about palliative care and influencing factors has not been examined adequately in Arab countries including Palestine. Thus, this study aimed to assess the adequacy of knowledge level and influencing factors (socio-demographic) about palliative care among nurses in West Bank/ Palestine. <b>Methods</b>: A descriptive-correlational design was utilized. A cluster random sampling method was applied to select 12 hospitals from the three regions in West Bank. Then, four hospitals were selected from each region using a simple random method. All registered nurses working in critical care units and medical and surgical wards in the selected hospitals were recruited. The sample consists of 424 registered nurses and data were collected using Palliative Care Quiz for Nursing (PCQN). <b>Results</b>: The Findings revealed that nurses' level of knowledge about palliative care was low/inadequate (M = 7.75, SD = 2.96). Knowledge about palliative care was influenced by age (B = -.106; p < 0.05), gender (B = -.223; p < 0.001), and hospital ward (B = -.597; p < 0.001), in which younger nurses, females, and those who work in critical care units reported higher levels of knowledge about palliative care. <b>Conclusions</b>: Findings of this study emphasized the need for developing educational and training courses, seminars, and workshops on palliative care to increase nurses' knowledge in order to enhance the quality of patient care. Also, policymakers should develop national strategic plans and policies regarding palliative care and apply these plans in all hospitals in West Bank/ Palestine.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9887998","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
"It's Not Just the Seizures": Brain Tumor Caregivers' Experiences and Educational Needs in Out-of-Hospital Seizure Management. “不仅仅是癫痫发作”:脑肿瘤护理人员在院外癫痫发作管理中的经验和教育需求。
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 DOI: 10.1177/08258597231165898
Deborah Ejem, Macy Stockdill, Rebecca Edwards, J Nicholas Dionne-Odom, Richard Taylor, Walter Baehr, L Burt Nabors, Marie Bakitas, Paula Warren
{"title":"\"It's Not Just the Seizures\": Brain Tumor Caregivers' Experiences and Educational Needs in Out-of-Hospital Seizure Management.","authors":"Deborah Ejem,&nbsp;Macy Stockdill,&nbsp;Rebecca Edwards,&nbsp;J Nicholas Dionne-Odom,&nbsp;Richard Taylor,&nbsp;Walter Baehr,&nbsp;L Burt Nabors,&nbsp;Marie Bakitas,&nbsp;Paula Warren","doi":"10.1177/08258597231165898","DOIUrl":"https://doi.org/10.1177/08258597231165898","url":null,"abstract":"<p><p><b>Objective:</b> Family caregivers (FCGs) of persons with primary brain tumors (PBTs) report high levels of distress related to concerns about out-of-hospital seizures. This study aims to explore their experiences and needs with seizure management. <b>Methods:</b> Semi-structured interviews were held with 15 FCGs of persons with PBTs, both those who have <i>and</i> those who have not experienced a seizure, to elicit their concerns about out-of-hospital seizure management and related information needs. A qualitative descriptive study using thematic analysis was conducted based on interview data. <b>Results:</b> Three primary themes were identified relative to FCG experiences and needs related to care of PBTs patients, especially seizure management: (1) FCGs' experiences with caring for persons with PBTs; (2) FCGs' educational needs for seizure preparation and resources; and (3) FCGs' desired type of educational resources and information about seizures. Often FCGs were reported being fearful of seizures and nearly all expressed difficulty knowing when to call emergency services. FCGs equally desired written and online resources, and most preferred graphics or videos detailing seizures. Most FCGs thought that seizure-related training should come after rather than at the time of PBTs diagnosis. FCGs of patients who have not experienced seizures were significantly less prepared to manage seizures than those with a prior seizure. <b>Conclusions:</b> Recognizing and managing out-of-hospital seizures can be a difficult and distressing task for FCGs of patients with PBTs and seizure-related resources are needed. Our results suggest that FCGs of care recipients with PBTs need early supportive interventions to provide self-care strategies and problem-solving skills to manage their roles as caregivers. Interventions should include educational components to assist them in understanding the best mechanisms to maintain a safe environment for their care recipients, and those that deepen knowledge about when to contact EMS.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9792312","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing. 家庭成员对以照护者为中心与安宁疗护跨学科团队沟通的看法:与照护者福祉的关系。
IF 1.3 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 Epub Date: 2022-07-25 DOI: 10.1177/08258597221113725
Karla T Washington, George Demiris, Kyle A Pitzer, Carl Tunink, Jacquelyn J Benson, Debra Parker Oliver
{"title":"Family Members' Perceptions of Caregiver-Centered Communication with Hospice Interdisciplinary Teams: Relationship to Caregiver Wellbeing.","authors":"Karla T Washington, George Demiris, Kyle A Pitzer, Carl Tunink, Jacquelyn J Benson, Debra Parker Oliver","doi":"10.1177/08258597221113725","DOIUrl":"10.1177/08258597221113725","url":null,"abstract":"<p><strong>Objective: </strong>Investigators sought to determine how family caregivers' psychological and physical wellbeing influenced their perceptions of communication with hospice providers.</p><p><strong>Methods: </strong>Researchers conducted a secondary analysis of quantitative data generated during two multisite randomized clinical trials of supportive interventions for hospice family caregivers. Caregivers' (N = 525) self-reported anxious symptoms, depressive symptoms, physical quality of life, and perceptions of communication with hospice providers were analyzed via a series of linear models that included demographic and contextual controls.</p><p><strong>Results: </strong>Caregivers' anxious symptoms, depressive symptoms, and physical quality of life were largely unrelated to caregivers' perceptions of their communication with hospice providers when adjusted for demographic and contextual factors.</p><p><strong>Conclusions: </strong>Variation in caregivers' perceptions of their communication with hospice providers was not well explained by caregiver wellbeing. Additional research is needed to understand if and how caregivers' perceptions of communication with hospice providers are related to factors not included in this secondary analysis. Provider-related variables may be particularly important to consider.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.3,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9873832/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9840482","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
The Italian McGill Quality of Life Questionnaire-Revised (MQoL-R): Psychometrics in Neurological and Neoplastic Populations. 意大利麦吉尔生活质量问卷-修订(MQoL-R):神经和肿瘤人群的心理测量学。
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 DOI: 10.1177/08258597221123454
Edoardo Nicolò Aiello, Debora Pain, Alice Radici, Elvira Filippelli, Stefania Ruvolo, Francesca Madonia, Annarita Caimi, Cinzia Sguazzin
{"title":"The Italian McGill Quality of Life Questionnaire-Revised (MQoL-R): Psychometrics in Neurological and Neoplastic Populations.","authors":"Edoardo Nicolò Aiello,&nbsp;Debora Pain,&nbsp;Alice Radici,&nbsp;Elvira Filippelli,&nbsp;Stefania Ruvolo,&nbsp;Francesca Madonia,&nbsp;Annarita Caimi,&nbsp;Cinzia Sguazzin","doi":"10.1177/08258597221123454","DOIUrl":"https://doi.org/10.1177/08258597221123454","url":null,"abstract":"<p><strong>Background: </strong>The McGill Quality of Life Questionnaire-Revised (MQoL-R) is the gold standard for assessing QoL in end-of-life, chronic patients; however, an Italian standardization is lacking.</p><p><strong>Objective: </strong>This study aimed at assessing the psychometric properties of the Italian MQoL-R in patients with chronic neurological/oncological conditions.</p><p><strong>Methods: </strong>177 inpatients with life-threatening, chronic neurological/oncological conditions were consecutively recruited in 8 clinics in Northern/Southern Italy were administered the MQoL-R and the Karnofsky Performance Status (KPS). Factorial structure (Confirmatory Factor Analysis, CFA), reliability (Cronbach's α) and construct validity against the KPS (Pearson's coefficients) were examined.</p><p><strong>Results: </strong>The four-factor model (Physical, Psychological, Existential and Social subscales) was met (comparative fit index = .93; root mean square error of approximation = .07), with all items significantly loading on respective subscales. Internal consistency was good for both the whole scale (Cronbach's α = .83) and subscales (<i>range</i> = .6-.85). The KPS was unrelated to MQoL-R measures, except for the Physical subscale (<i>r</i> = .24).</p><p><strong>Conclusions: </strong>The Italian MQoL-R is a valid and reliable tool to assess QoL in end-of-life, both neoplastic and neurological, chronic inpatients undergoing palliative care, whose adoption is thus encouraged in both clinical practice and research addressed to such populations.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9775496","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 2
Moral Challenges of Nurses and Volunteers in Dutch Palliative Care. A Qualitative Study. 荷兰姑息治疗中护士和志愿者的道德挑战。定性研究。
IF 1.7 4区 医学
Journal of Palliative Care Pub Date : 2023-07-01 Epub Date: 2022-05-25 DOI: 10.1177/08258597221098129
Geerke van den Bosch, Malene van Schaik, H Roeline Pasman, Rien Janssens, Guy Widdershoven, Suzanne Metselaar
{"title":"Moral Challenges of Nurses and Volunteers in Dutch Palliative Care. A Qualitative Study.","authors":"Geerke van den Bosch,&nbsp;Malene van Schaik,&nbsp;H Roeline Pasman,&nbsp;Rien Janssens,&nbsp;Guy Widdershoven,&nbsp;Suzanne Metselaar","doi":"10.1177/08258597221098129","DOIUrl":"10.1177/08258597221098129","url":null,"abstract":"<p><p><b>Objective:</b> To identify moral challenges experienced by nurses and volunteers in palliative care. <b>Methods:</b> A qualitative hermeneutic research design was used. Interviews with nurses (<i>N</i> = 10) and volunteers (<i>N</i> = 4) working in palliative care, in-home care, and hospice setting. Participants were recruited through maximum variation, a purposive sampling technique. Transcriptions were analyzed using qualitative thematic content analysis and open coding. <b>Results:</b> Two themes were identified, each with three subthemes: theme (A) Moral challenges regarding organizational and professional aspects contained the subthemes (1) dealing with protocols and regulations, (2) different professional perspectives on good care, and (3) limits of professionalism. Theme (B) Moral challenges regarding the patient and their family members contained the subthemes (1) dealing with the patient's wishes, (2) the patient's wish to die, and (3) dealing with family members. <b>Conclusion:</b> Nurses and volunteers working in palliative care are confronted with a wide range of moral challenges. Insight into 'real-world ethical challenges' of healthcare providers is important to provide adequate support to nurses and volunteers working in palliative care.</p>","PeriodicalId":51096,"journal":{"name":"Journal of Palliative Care","volume":null,"pages":null},"PeriodicalIF":1.7,"publicationDate":"2023-07-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10350729/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"9828758","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"OA","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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