Palliative & Supportive Care最新文献

{"title":"Deathbed experiences and meaning-making: Perspectives of family caregivers of patients who received cancer palliative care.","authors":"Irene Teo, Keerthana Paramasivam, Wai Yee Chee, Carolyn Ng, Patricia Soek Hui Neo, Geok Ling Lee","doi":"10.1017/S1478951523001670","DOIUrl":"10.1017/S1478951523001670","url":null,"abstract":"<p><strong>Objectives: </strong>The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient's death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver's meaning-making that occurred after the patient's death.</p><p><strong>Methods: </strong>In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver's perspective before and after the death of the patient. Thematic content analysis method was conducted.</p><p><strong>Results: </strong>A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers' recollected experiences around the patient deathbed: <i>Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort</i>, and <i>Impact on family ties</i>. Four themes emerged surrounding post-loss meaning-making: <i>An end to the pain and suffering, \"Have I done enough?,\" Significance in the timing of events</i>, and <i>Gaining strength and personal growth</i>.</p><p><strong>Significance of results: </strong>The deathbed is a salient time for family caregivers as they prepare for patient's death. There are opportunities to provide support to the family based on the study findings.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138488722","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}

{"title":"Adjustment to \"new normal\" after cancer among non-small cell lung cancer survivors: A qualitative study.","authors":"Genehee Lee, Soo Yeon Kim, Alice Ahn, Sunga Kong, Heesu Nam, Danbee Kang, Hong Kwan Kim, Young Mog Shim, Ansuk Jeong, Dong Wook Shin, Juhee Cho","doi":"10.1017/S1478951523001815","DOIUrl":"10.1017/S1478951523001815","url":null,"abstract":"<p><strong>Objectives: </strong>Cancer is a life-changing experience, and side effects from treatment can make it difficult for survivors to return to their pre-cancer \"normal life.\" We explored the \"new normal\" and barriers to achieving it among lung cancer survivors who underwent surgery.</p><p><strong>Methods: </strong>Semi-structured interviews were conducted with 32 recurrence-free non-small cell lung cancer survivors. We asked survivors how life had changed; how they defined the \"new normal\"; barriers that prevent them from achieving a \"normal\" life; and unmet needs or support for normalcy. Thematic analysis was performed.</p><p><strong>Results: </strong>Defining \"new normal\" subjectively depends on an individual's expectation of recovery: (1) being able to do what they want without pain or discomfort; (2) being able to do activities they could accomplish before their surgery; and (3) being able to work, earn money, and support their family. We found that (1) persistent symptoms, (2) fear of cancer recurrence, (3) high expectations in recovery, and (4) psychosocial stress and guilty feelings were barriers to achieving a \"new normal.\" The needs and support for normalcy were information on expected trajectories, postoperative management, and support from family and society.</p><p><strong>Significance of results: </strong>Survivors defined the \"new normal\" differently, depending on their expectations for recovery. Informing survivors about the \"new normal\" so they could expect possible changes and set realistic goals for their life after cancer. Health professionals need to communicate with survivors about expectations for \"normality\" from the beginning of treatment, and it should be included in comprehensive survivorship care.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832326","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}

{"title":"Effectiveness of a palliative care education program for caregivers of cancer patients receiving chemotherapy in Port Said City: A pre-post quasi-experimental study.","authors":"Ateya Megahed Ibrahim, Sara Fawzy Elnaghy, Gehad Mohamed Abo Elmatty, Nglaa Ibrahim Mohamed Ghida, Magda Ali Mohamed","doi":"10.1017/S1478951523002067","DOIUrl":"10.1017/S1478951523002067","url":null,"abstract":"<p><strong>Background: </strong>Emphasizing the pivotal role of caregivers in the cancer care continuum, a program designed to educate caregivers of cancer patients undergoing chemotherapy underscores their significance. The palliative care education initiative strives to cultivate a compassionate and effective care environment, benefiting both patients and caregivers. By imparting education, fostering positive attitudes, offering support, encouraging appropriate behaviors, and providing essential resources, the program aims to enhance the overall caregiving experience and contribute to the well-being of those navigating the challenges of cancer treatment.</p><p><strong>Objectives: </strong>To evaluate the effectiveness of a palliative care education program for caregivers of cancer patients receiving chemotherapy.</p><p><strong>Methods: </strong>The research employed a purposive sample comprising 155 caregivers who were actively present with their cancer patients throughout the pre- and post-test phases within a quasi-experimental research design. The study took place at the outpatient oncology center of Al-Shifa Medical Complex in Port Said City, Egypt. To gather comprehensive data, 4 instruments were utilized: a demographic questionnaire, a nurse knowledge questionnaire, a scale measuring attitudes toward palliative care, and an assessment of reported practices in palliative care. This methodological approach allowed for a thorough exploration of caregiver perspectives, knowledge, attitudes, and practices within the context of a palliative care education program.</p><p><strong>Results: </strong>Before the palliative care education program, only 1.3% of caregivers had a good overall level of knowledge about cancer and palliative care; this increased to 40.6% after the program. Similarly, before the palliative care education program, 32.9% of caregivers had a positive overall attitude, which increased to 72.3% after the program. Similarly, 27.1% of caregivers had an overall appropriate palliative care practice during the pre-test phase, which increased to 93.5% after the palliative care education program.</p><p><strong>Significance of the results: </strong>The palliative care education program significantly improved caregivers' knowledge, attitudes, and practice scores. It is strongly recommended that caregivers of cancer patients receive continuing education in palliative care. In addition, it is crucial to conduct further research with a larger sample size in different situations in Egypt.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139576924","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}

{"title":"What does the word healing mean to you? Perceptions of patients with life-limiting illness.","authors":"Danetta Hendricks Sloan, Karlynn BrintzenhofeSzoc, Erin Mistretta, Justin Cova, Lingsheng Li, Gordon Willis, Meaghann S Weaver, Ann Berger","doi":"10.1017/S1478951522000839","DOIUrl":"10.1017/S1478951522000839","url":null,"abstract":"<p><strong>Introduction: </strong>There is a growing consensus that patient-centered care is more effective in treating patients than a strictly biomedical model, where there are known challenges to involving the patient in assessments, treatment goals, and determining preferred outcomes.</p><p><strong>Objectives: </strong>The current study seeks to integrate patient values and perspectives by exploring how people diagnosed with a life-limiting disease define healing in their own words.</p><p><strong>Methods: </strong>As a part of a larger study that included cognitive interviewing, we asked the question \"what does the word healing mean to you?\" Data were collected during face-to-face interviews with patients from three metropolitan healthcare facilities.</p><p><strong>Results: </strong>Thirty participants responded to the question \"what does healing mean to you?\" Seven themes were identified through the data analysis. These themes include acceptance, feeling better, pain, social support, process, religion/spirituality, and make whole. The feeling better, pain, and process themes have subthemes.</p><p><strong>Significance of results: </strong>Probing to understand patient perspectives and how to provide a holistic approach to care is essential to patient treatment. Patients defined healing in a broader way than how it is typically defined in literature. The patients' definitions provide greater insight into perceptions and expectations regarding the healing process.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40681074","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}

{"title":"Emotion dysregulation and family functioning moderate family caregiving burden during the pandemic.","authors":"Dahee Kim, Beth S Russell, Crystal L Park, Michael Fendrich","doi":"10.1017/S1478951523001712","DOIUrl":"10.1017/S1478951523001712","url":null,"abstract":"<p><strong>Objectives: </strong>Since the onset of COVID-19 pandemic, additional risk factors affecting family caregivers' mental health have arisen. Therefore, personal stress coping strategies and family dynamics became important factors in reducing the impact of the pandemic on family caregivers' mental health. The present research aimed to estimate the association between COVID-19 stressors and family caregiving burden. Moreover, moderating effects of emotion dysregulation and family functioning on this association were investigated.</p><p><strong>Methods: </strong>This study analyzed data collected in April 2021 from 154 family caregivers (<i>M</i>_age = 38.79, <i>SD</i>_age = 9.36, range = 22-64) recruited through Amazon's Mechanical Turk (MTurk). The impact of COVID-19 stressors on family caregiving burden was tested, and moderating impacts of emotion dysregulation and family functioning were also investigated.</p><p><strong>Results: </strong>Both COVID-19 stress exposure and stress appraisal were positively associated with family caregiving burden. Emotion dysregulation and problematic family functioning were also positively associated with family caregiving burden. A significant moderating effect of emotion dysregulation was found, such that family caregivers with higher emotion dysregulation were likely to feel more caregiving burden when they experienced more COVID-19 stressors.</p><p><strong>Significance of results: </strong>The current research highlighted the role of emotion regulation in reducing the negative impact of COVID-19 stressors on family caregiving burden. The research also emphasizes the need for intervention programs to improve emotion regulation strategies to decrease family caregiving burden during the pandemic.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138300260","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}

{"title":"Positive psychology interventions in palliative care: Cui bono?","authors":"Friedrich Stiefel, Céline Bourquin, Laurent Michaud","doi":"10.1017/S1478951523001682","DOIUrl":"10.1017/S1478951523001682","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832328","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}

{"title":"COPD patients' accessibility to palliative care: Current challenges and opportunities for improvement.","authors":"Barbara Gonçalves, Eileen Harkess-Murphy, Audrey Cund, Caroline Sime, Joanne Lusher","doi":"10.1017/S1478951524000063","DOIUrl":"10.1017/S1478951524000063","url":null,"abstract":"","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"139543248","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}

{"title":"The Neonatal Palliative Care Attitude Scale: Psychometric properties for Portuguese neonatal nurses.","authors":"Fátima Pacheco Sousa, Maria Graça Roldão, Ana Marisa Rebotim, Ana Rita Figueira, Joana Barbosa, Emília Fradique, Maria Alice Santos Curado","doi":"10.1017/S1478951522000797","DOIUrl":"10.1017/S1478951522000797","url":null,"abstract":"<p><strong>Background: </strong>This study is aimed to perform the translation and cultural adaptation of the Neonatal Palliative Care Attitude Scale (NiPCAS) and evaluation of its psychometric properties with Portuguese neonatal nurses.</p><p><strong>Methods: </strong>The research started with a scoping review that allowed the identification of the NiPCAS. It was a methodological study with a quantitative approach. The semantic equivalence of the items was adjusted with the participation of 20 neonatal nurse experts. They performed facial and quantitative content validation. Psychometric validation of the NiPCAS was performed on a nonprobability nurses sample (<i>n</i> = 283) in 13 level 3 neonatal units between July 2021 and February 2022. Confirmatory factor analysis using the polychoric correlation matrix was performed to estimate factor validity using the \"lavaan\" package for R statistical software. Internal consistency was estimated using Cronbach's alpha coefficient, and item sensitivity was assessed using the asymmetry and kurtosis coefficients. Empirical indices were considered: chi-square over degrees of freedom; comparative fit index; normed fit index; Tucker-Lewis index, and root mean square error of approximation; average extracted variance and composite reliability were used to assess convergent validity.</p><p><strong>Results: </strong>Asymmetry and kurtosis were <|3| and <|7|, respectively, suggesting psychometric sensitivity. The convergent validity of the factors was: F1, FCF1 = 0.90 and for F2, FCF2 = 0.80, and a lower value for F3, FCF3 = 0.40. According to the squared correlation criterion average variance extracted (AVE) between the factors, there was no discriminant validity for F1 and F2, but there was discriminant validity for F1, F3, F2, and F3.</p><p><strong>Significance of results: </strong>This instrument has implications for providing end-of-life care to newborns and their families. The use of this instrument reveals several barriers and facilitating elements inherent in the organization and culture of the facility and nursing education.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"40608370","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}

{"title":"Palliative care in the treatment of women with breast cancer: A scoping review.","authors":"Romel Jonathan Velasco Yanez, Ana Fátima Carvalho Fernandes, Erilaine de Freitas Corpes, Régia Christina Moura Barbosa Castro, Judith Sixsmith, Luís Carlos Lopes-Júnior","doi":"10.1017/S1478951523001840","DOIUrl":"10.1017/S1478951523001840","url":null,"abstract":"<p><strong>Objectives: </strong>Recent studies on the quality of life in women with breast cancer show a high prevalence of signs and symptoms that should be the focus of palliative care (PC), leading us to question the current role they play in addressing breast cancer. Therefore, the objective of this review is to map the scope of available literature on the role of PC in the treatment of women with breast cancer.</p><p><strong>Methods: </strong>This is a methodologically guided scoping review by the Joanna Briggs Institute and adapted to the PRISMA Extension for Scoping Reviews (PRISMA-ScR) Checklist for report writing. Systematic searches were conducted in 8 databases, an electronic repository, and gray literature. The searches were conducted with the support of a librarian. The study selection was managed through the RAYYAN software in a blind and independent manner by 2 reviewers. The extracted data were analyzed using the qualitative thematic analysis technique and discussed through textual categories.</p><p><strong>Results: </strong>A total of 9,812 studies were identified, of which only 136 articles and 3 sources of gray literature are included in this review. In terms of general characteristics, the majority were published in the USA (35.7%), had a cross-sectional design (44.8%), and were abstracts presented at scientific events (19.6%). The majority of interventions focused on palliative radiotherapy (13.6%). Thematic analysis identified 14 themes and 12 subthemes.</p><p><strong>Significance of results: </strong>Our findings offer a comprehensive view of the evidence on PC in the treatment of breast cancer. Although a methodological quality assessment was not conducted, these results could guide professionals interested in the topic to position themselves in the current context. Additionally, a quick synthesis of recommendations on different palliative therapies is provided, which should be critically observed. Finally, multiple knowledge gaps are highlighted, which could be used for the development of future studies in this field.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138499807","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}

{"title":"Reiki intervention for supporting healthcare professional care behaviors in pediatric palliative care: A pilot study.","authors":"Giulia Zucchetti, Sabrina Ciappina, Cristina Bottigelli, Gabriela Campione, Annalisa Parrinello, Paola Piu, Stefano Lijoi, Paola Quarello, Franca Fagioli","doi":"10.1017/S1478951523001852","DOIUrl":"10.1017/S1478951523001852","url":null,"abstract":"<p><strong>Objectives: </strong>Pediatric healthcare professionals (HCPs) working in a palliative setting may experience challenges during their clinical practice in addressing the complex end-of-life phase of children and their families. Nurses, especially, have a frontline role in providing assistance, thereby becoming at risk of physical and psychological burden. Pediatric psychologists have an ethical responsibility to help colleagues by proposing self-care interventions that will improve their well-being and, indirectly, the work climate. This study investigated the impact of a complementary therapy, delivered by a pediatric psychologist and a nurse, on physical and psychological variables among nurses at the Paediatric Hospice of the Regina Margherita Children's Hospital in Italy.</p><p><strong>Methods: </strong>Thirty-five nurses participated in 5 weeks of Reiki sessions for an overall total of 175 sessions. The effect of the sessions was analyzed through a paired <i>t</i>-test analysis comparing the values of heart rate, oxygen saturation, and systolic and diastolic pressure collected before and after each session. The same test was conducted comparing the values of the 3 burnout subscales for each of the 35 nurses collected before the beginning of the first session with those collected at the end of the last session 2 months later.</p><p><strong>Results: </strong>Results underlined a positive short-term effect with a significant decrease in heart rate before and after each session (<i>t</i> = 11.5, <i>p</i> < .001) and in systolic pressure (<i>t</i> = 2, <i>p</i> < .05). In addition, a decrease in emotional exhaustion symptoms was found (t = 2.3, <i>p</i> < .05) at the end of the intervention.</p><p><strong>Significance of results: </strong>Reiki could be a valid strategy to complement traditional pediatric psychology clinical practice designed to protect HCPs from emotional and physical demands and to create a more supportive workplace for staff and patients alike.</p>","PeriodicalId":47898,"journal":{"name":"Palliative & Supportive Care","volume":null,"pages":null},"PeriodicalIF":1.9,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138832329","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}