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The relationship between self-compassion and psychological distress in cancer patients and survivors: A systematic review and meta-analysis. 自我同情与癌症患者及幸存者心理困扰的关系:系统回顾与元分析。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-10-13 DOI: 10.1080/07347332.2025.2570787
Shahaf Bitan, Ilanit Hasson-Ohayon, Michal Lavidor, Shimrit Daches

Introduction: Self-compassion, directing kindness toward oneself during difficult experiences, has been linked to lower anxiety, depression, and stress throughout the cancer trajectory. This meta-analysis aimed to systematically review existing findings, calculate aggregated effect sizes, and examine cancer phase (acute vs. survivorship) as a potential moderator.

Methods: A systematic review and meta-analysis of 24 studies (3,626 participants across 13 countries) was conducted, assessing associations between self-compassion and anxiety (14 studies), depression (20), and stress (14) in cancer populations. PsycInfo, PubMed, and Google Scholar were searched on June 6, 2025.

Results: Medium-to-large negative associations were found between self-compassion and both anxiety and stress, and a large negative association with depression. Cancer phase moderated the relationship with stress, showing a stronger effect in survivorship than in the acute phase.

Conclusion: Self-compassion appears protective against psychological distress in cancer patients, especially during survivorship. Tailoring self-compassion-based interventions to cancer phase may enhance their effectiveness.

导读:自我同情,在困难的经历中对自己友善,与癌症轨迹中较低的焦虑、抑郁和压力有关。本荟萃分析旨在系统地回顾现有的研究结果,计算总体效应大小,并检查癌症分期(急性期与生存期)作为潜在的调节因素。方法:对来自13个国家的24项研究(3626名参与者)进行了系统回顾和荟萃分析,评估了癌症人群中自我同情与焦虑(14项研究)、抑郁(20项)和压力(14项)之间的关系。PsycInfo, PubMed和谷歌Scholar在2025年6月6日进行了搜索。结果:自我同情与焦虑、压力均呈中高负相关,与抑郁呈高负相关。癌症阶段缓和了与压力的关系,对生存的影响比急性期更强。结论:自我同情对癌症患者的心理困扰具有保护作用,尤其是在生存期。将基于自我同情的干预措施调整到癌症阶段可能会提高其有效性。
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引用次数: 0
Hair loss, love stays. 脱发,爱留。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-10-13 DOI: 10.1080/07347332.2025.2570784
Awu Isaac Oben
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引用次数: 0
Cancer fatigue and hair loss experiences among American Indian men. 美国印第安人男性的癌症、疲劳和脱发经历。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-10-13 DOI: 10.1080/07347332.2025.2568912
Felicia Schanche Hodge, Tracy Line Itty

Background: Little is known about the cancer symptom experiences of Indigenous populations, particularly concerning fatigue and hair loss. Hair loss can have many detrimental effects given the significant cultural importance of hair in Indigenous communities. Gaining a better understanding of the unique perspectives of American Indian male cancer survivors as they manage these two distinct symptoms is essential for improving symptom management and quality of life measures in this underserved population. Methods: A multi-pronged study explored the barriers, facilitators, and cultural constructs associated with cancer symptoms. Focus group sessions with American Indian cancer survivors and caregivers in the Southwest gathered data on survivor experiences, with male responses isolated for analysis. The subsequent randomized control trial intervention (N = 231) tested an educational toolkit and "Talking Circles" designed to help survivors and their families better manage cancer symptoms. Results: Study findings report on the unique fatigue and hair loss experiences of American Indian male cancer survivors. Conclusion: The insights gained prove valuable for educational and intervention programs targeting the mangagement of cancer symptoms among Indigenous populations.

背景:我们对土著居民的癌症症状知之甚少,尤其是疲劳和脱发。鉴于头发在土著社区具有重要的文化意义,脱发可能会产生许多有害影响。更好地了解美国印第安男性癌症幸存者在处理这两种不同症状时的独特视角,对于改善这一服务不足人群的症状管理和生活质量措施至关重要。方法:一项多管齐下的研究探讨了与癌症症状相关的障碍、促进因素和文化建构。与西南地区的美国印第安人癌症幸存者和护理人员进行焦点小组会议,收集幸存者经历的数据,并将男性反应分离出来进行分析。随后的随机对照试验干预(N = 231)测试了一个教育工具包和“谈话圈”,旨在帮助幸存者及其家人更好地控制癌症症状。结果:研究结果报告了美国印第安男性癌症幸存者独特的疲劳和脱发经历。结论:获得的见解证明了针对土著居民癌症症状管理的教育和干预计划的价值。
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引用次数: 0
"Pink is my least favorite color": experiences of sexual minority women and partners navigating breast cancer. “粉色是我最不喜欢的颜色”:性少数女性和伴侣应对乳腺癌的经历。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-10-09 DOI: 10.1080/07347332.2025.2567399
Elizabeth K Arthur, Megan E Gandy, Eric Sette, John A Fuller, Laura K Flora, Julia M Applegate, Jennifer Suchland, Katie Klakos, Michele Battle-Fisher, Clara N Lee

Purpose: Studies describing breast cancer care experiences of sexual minority women (SMW) and partners of survivors are lacking. Using a community-engaged approach, we characterized barriers to quality, person-centered care and quality of life outcomes in sexual minority breast cancer survivors.

Methods: Sexual minority breast cancer survivors and partners participated in a brief survey and 60-minute qualitative interview. Data were analyzed using applied thematic analysis using NVivo software.

Findings: Participants were survivors (n = 14), partners (n = 5), and individuals who were both survivors and partners (n = 4). Three themes describe the influence of sexual orientation on the cancer experience; influence of cancer treatment on sexuality, gender experience, and relationships; and advice for other SMW survivors and breast cancer clinicians.

Conclusions: Significant gaps in breast cancer care delivery were identified, warranting clinical education, resources, and interventions to improve SMW breast cancer care.

目的:缺乏描述性少数女性(SMW)和幸存者伴侣乳腺癌护理经历的研究。采用社区参与的方法,我们描述了性少数乳腺癌幸存者在质量、以人为本的护理和生活质量方面的障碍。方法:对性少数乳腺癌幸存者及其伴侣进行简短调查和60分钟的定性访谈。数据分析采用NVivo应用专题分析软件。研究结果:参与者包括幸存者(n = 14)、伴侣(n = 5)和既是幸存者又是伴侣的个体(n = 4)。三个主题描述了性取向对癌症经历的影响;癌症治疗对性行为、性别体验和两性关系的影响;并为其他SMW幸存者和乳腺癌临床医生提供建议。结论:乳腺癌护理服务存在显著差距,需要临床教育、资源和干预措施来改善SMW乳腺癌护理。
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引用次数: 0
Social wellbeing, loneliness, and symptom burden in head and neck cancer survivors: a latent class analysis. 头颈癌幸存者的社会幸福感、孤独感和症状负担:潜在分类分析
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-10-03 DOI: 10.1080/07347332.2025.2565302
Eden R Brauer, Kristen R Choi, Laura Petersen, Patricia A Ganz, Maie A St John, Deborah J Wong, Emily J Martin

Purpose: To identify patterns of co-occurring symptoms in a sample of head and neck cancer (HNC) survivors; compare symptom burden among latent classes; and examine associations between symptom classes and social wellbeing outcomes.

Methods: This cross-sectional survey of HNC survivors ≥1 year post-diagnosis was conducted in 2020 using a tumor registry at an academic medical center. Primary outcomes were loneliness and activities impairment. Participants reported 19 HNC-specific symptoms using the European Organization for Research and Treatment of Cancer HNC module (EORTC HN-43), and general cancer symptoms (sleep, pain, anxiety, depression, fatigue). Latent class analysis was used to identify subgroups with different symptom patterns. Multivariable regression models were estimated to examine associations between class membership and social wellbeing outcomes.

Findings: Three hundred forty-seven survivors (mean age 65.5 ± 11.3 years; 3.72 ± 2.3 years post-diagnosis) completed the survey. Participants were predominantly male (72.6%), White (81.6%), and under age 65 years at diagnosis (59.4%). Three symptom classes were identified: (1) complex symptom burden (45%), (2) oral/sensory symptom dominant (38.9%), and (3) limited symptom impact (15.8%). Membership in the complex symptom burden class was associated with increased activity impairment (β = 28.6, SE = 3.7, p<.001) and increased loneliness (β = 1.1, SE = 0.2, p<.001) compared to the oral/sensory class (most similar to overall sample).

Conclusion: Elevated and complex HNC symptom burden is associated with higher levels of general cancer symptoms and risk for loneliness and reduced engagement in daily activities. Tailored survivorship care models addressing symptom profiles of HNC survivors, particularly those with complex symptom burden, are needed to improve quality of life.

目的:确定头颈癌(HNC)幸存者样本中共存症状的模式;潜伏类间症状负担比较;并研究症状类别与社会福利结果之间的关系。方法:这项横断面调查是在2020年对诊断后≥1年的HNC幸存者进行的,使用的是一个学术医疗中心的肿瘤登记处。主要结局是孤独和活动障碍。参与者使用欧洲癌症研究和治疗组织HNC模块(EORTC HN-43)报告了19种HNC特异性症状,以及一般癌症症状(睡眠、疼痛、焦虑、抑郁、疲劳)。潜在类别分析用于识别不同症状模式的亚组。估计了多变量回归模型来检查阶级成员和社会福利结果之间的关联。结果:347名幸存者(平均年龄65.5±11.3岁;诊断后3.72±2.3年)完成了调查。参与者主要是男性(72.6%),白人(81.6%),诊断时年龄在65岁以下(59.4%)。症状分为三类:(1)复杂症状负担(45%),(2)口腔/感觉症状为主(38.9%),(3)症状影响有限(15.8%)。复杂症状负担类别的成员与活动障碍增加相关(β = 28.6, SE = 3.7, pβ = 1.1, SE = 0.2, p)结论:复杂HNC症状负担的升高与一般癌症症状水平升高、孤独感风险和日常活动参与减少相关。需要针对HNC幸存者的症状特征,特别是那些有复杂症状负担的幸存者的量身定制的生存护理模式,以提高生活质量。
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引用次数: 0
Religious and existential coping among pediatric cancer patients and healthy controls: Impact on psychological growth and distress. 儿童癌症患者及健康对照的宗教和存在应对:对心理成长和痛苦的影响
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-10-01 DOI: 10.1080/07347332.2025.2567405
Evan E Rooney, Alanna Long, Sean Phipps, Rachel T Webster

Objective: To examine the longitudinal relationship between the use of religious and existential coping strategies on future psychological growth and distress among youth with a history of cancer and matched peers without cancer.

Method: Participants (n = 294; cancer history = 179; no cancer history = 115) were aged 8-17 years at time of study enrollment. Participants completed assessments of religious and existential coping 3 years from baseline assessment, and assessments of psychological stress and growth 5 years from baseline assessment. Regression analyses examined medical, sociodemographic, and religious and existential coping factors associated with assessments of psychological stress and growth. The moderating roles of religious and existential coping on the relationship between group membership (i.e. those with/without cancer history) and psychological distress and growth were explored.

Results: A significant interaction effect was observed for psychological distress which indicated non-cancer comparisons, but not youth with cancer, reported greater psychological distress at year 5 when low levels of existential coping were reported at year 3. Additionally, a significant interaction effect was observed for psychological growth which indicated youth with cancer, but not non-cancer comparisons, reported greater psychological growth at year 5 when high levels of religious coping were reported at year 3.

Conclusion: Results highlight religious coping was associated with greater psychological growth but not distress among youth with cancer, and suggest clinicians should aim to treat patient's spirituality with cultural humility and find ways to incorporate aspects of patient's spirituality into evidence-based behavioral health treatments.

目的:探讨宗教与存在主义应对策略在有癌症病史的青少年和同龄无癌症青少年未来心理成长和痛苦方面的纵向关系。方法:研究入组时,参与者(n = 294;癌症病史= 179;无癌症病史= 115)年龄为8-17岁。受试者在基线评估后3年完成宗教和生存应对评估,在基线评估后5年完成心理压力和成长评估。回归分析检查了与心理压力和成长评估相关的医学、社会人口、宗教和存在性应对因素。探讨了宗教和存在主义应对在群体成员(即有/无癌症病史者)与心理困扰和成长的关系中的调节作用。结果:在心理困扰方面观察到显著的相互作用,这表明非癌症比较,但没有癌症的年轻人,在第5年报告了更大的心理困扰,而在第3年报告了低水平的存在应对。此外,在心理成长方面观察到显著的相互作用,这表明患有癌症的青少年,而不是非癌症的青少年,在第5年报告了更大的心理成长,而第三年报告了高水平的宗教应对。结论:研究结果强调了宗教应对与青少年癌症患者更大的心理成长有关,而不是痛苦,并建议临床医生应该以文化谦逊的态度对待患者的精神,并找到将患者精神方面纳入循证行为健康治疗的方法。
{"title":"Religious and existential coping among pediatric cancer patients and healthy controls: Impact on psychological growth and distress.","authors":"Evan E Rooney, Alanna Long, Sean Phipps, Rachel T Webster","doi":"10.1080/07347332.2025.2567405","DOIUrl":"https://doi.org/10.1080/07347332.2025.2567405","url":null,"abstract":"<p><strong>Objective: </strong>To examine the longitudinal relationship between the use of religious and existential coping strategies on future psychological growth and distress among youth with a history of cancer and matched peers without cancer.</p><p><strong>Method: </strong>Participants (<i>n</i> = 294; cancer history = 179; no cancer history = 115) were aged 8-17 years at time of study enrollment. Participants completed assessments of religious and existential coping 3 years from baseline assessment, and assessments of psychological stress and growth 5 years from baseline assessment. Regression analyses examined medical, sociodemographic, and religious and existential coping factors associated with assessments of psychological stress and growth. The moderating roles of religious and existential coping on the relationship between group membership (i.e. those with/without cancer history) and psychological distress and growth were explored.</p><p><strong>Results: </strong>A significant interaction effect was observed for psychological distress which indicated non-cancer comparisons, but not youth with cancer, reported greater psychological distress at year 5 when low levels of existential coping were reported at year 3. Additionally, a significant interaction effect was observed for psychological growth which indicated youth with cancer, but not non-cancer comparisons, reported greater psychological growth at year 5 when high levels of religious coping were reported at year 3.</p><p><strong>Conclusion: </strong>Results highlight religious coping was associated with greater psychological growth but not distress among youth with cancer, and suggest clinicians should aim to treat patient's spirituality with cultural humility and find ways to incorporate aspects of patient's spirituality into evidence-based behavioral health treatments.</p>","PeriodicalId":47451,"journal":{"name":"Journal of Psychosocial Oncology","volume":" ","pages":"1-17"},"PeriodicalIF":1.5,"publicationDate":"2025-10-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"145201374","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
Centering the voices of African American women with cancer: A story circle approach to address communication disparities. 以非裔美国癌症女性的声音为中心:一个解决沟通差异的故事圈方法。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-09-25 DOI: 10.1080/07347332.2025.2559638
Billie J Baldwin

Purpose: African American women experience significant disparities in cancer outcomes, shaped not only by social determinants of health but also by persistent communication barriers within oncology care. This manuscript presents a trauma-informed, culturally grounded intervention - story circles - a narrative-based program designed to improve relational trust and mutual understanding between African American women with cancer and their oncology providers.

Approach: This article outlines the conceptual foundations, implementation strategy, and evaluation framework for story circles in oncology. The model integrates trauma-informed care, narrative medicine, and critical race theory, and is adapted from UNESCO and the Free Southern Theater's Story Circle Process. It is designed to support cross-cultural dialogue in a structured, inclusive setting.

Program description: Oncology social workers facilitate sessions of four to six participants using structured storytelling prompts and reflective dialogue. Participants include African American women with cancer and oncology providers. Each session emphasizes cultural humility, listening without judgment, and honoring lived experience. Story circles promote trust, and provider empathy, relational insight, and communication equity.

Implications: Story circles are a low-cost, scalable strategy that aligns with institutional health equity priorities and national quality standards and can be integrated into ongoing professional development and psychosocial oncology services. Oncology social workers are well-positioned to lead implementation. This model supports cultural responsiveness, strengthens communication, and can inform future quality improvement and policy initiatives.

目的:非裔美国妇女在癌症预后方面存在显著差异,这不仅受到健康的社会决定因素的影响,而且受到肿瘤护理中持续存在的沟通障碍的影响。这份手稿提出了一个创伤知情的、文化基础的干预——故事圈——一个基于叙事的项目,旨在提高非裔美国癌症妇女和她们的肿瘤提供者之间的关系信任和相互理解。方法:本文概述了肿瘤故事圈的概念基础、实施策略和评估框架。该模式整合了创伤知情护理、叙事医学和批判种族理论,并改编自联合国教科文组织和自由南方剧院的故事圈过程。它旨在支持跨文化对话在一个结构化的,包容的环境。项目描述:肿瘤社会工作者通过结构化的讲故事提示和反思对话促进四到六人的会议。参与者包括患有癌症和肿瘤的非裔美国妇女。每次会议都强调文化上的谦逊,不带评判地倾听,尊重生活经验。故事圈促进了信任,提供了同理心、关系洞察力和沟通公平性。影响:故事圈是一种低成本、可扩展的战略,符合机构卫生公平优先事项和国家质量标准,可纳入正在进行的专业发展和社会心理肿瘤学服务。肿瘤社会工作者很有能力领导实施。这种模式支持文化响应,加强沟通,并可以为未来的质量改进和政策举措提供信息。
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引用次数: 0
Blood biomarkers and medication response following group psychotherapy as an add-on treatment in refractory idiopathic myelodysplasia. 作为难治性特发性骨髓增生附加治疗的群体心理治疗后的血液生物标志物和药物反应。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-09-22 DOI: 10.1080/07347332.2025.2559636
Daniela Polese, Alessandro Mazzetta, Leonarda Galiuto, Giovanni Di Nardo, Pasquale Parisi

Background: Refractory anemia is a hallmark of myelodysplastic syndromes (MDSs), a heterogeneous group of clonal hematopoietic stem cell disorders. Approximately 12% of MDS patients are under 50 years old, and nearly 50% exhibit poor response to standard treatments. Psychodynamic psychotherapy has been shown to be particularly effective in treating somatic disorders and medically unexplained symptoms.

Objective: This study reports a clinical case in which group psychotherapy, in combination with standard treatment, led to improvements in hematological parameters and treatment response in a patient with MDS.

Methods: A 48-year-old male patient diagnosed with idiopathic refractory myelodysplasia was undergoing treatment with epoetin (40,000 IU/ml, twice weekly) and vitamin B12 (1 g/day). The patient, experiencing depressive and obsessive symptoms, voluntarily initiated a group psychotherapy, based on the Human Birth Theory, a framework that fosters a clinician's focus on curability and vitality.

Results: The patient experienced gradual improvements in both psychological and medical conditions. Hematological para-meters began to improve after two years of therapy, reaching a stable normal range after four years. Psychological assessments (Beck Depression Inventory and Beck Anxiety Inventory) showed significant improvement post-treatment. After six years and five months, the patient completed psychotherapy. Four months later, pharmacological treatment was discontinued, with sustained clinical stability.

Conclusion: This case suggests that clinicians' attitude and an idea of curability can be crucial for the patient's psychological response to the treatment. Given the potential negative impact of psychiatric comorbidities on treatment efficacy and disease progression, psychological interventions can be considered as part of an integrated therapeutic approach. Psychotherapy based on the Human Birth Theory may offer specific benefits by fostering a more vital psychological response in the patient, in line with its foundational principles.

背景:难治性贫血是骨髓增生异常综合征(mds)的标志,mds是一种异质性克隆造血干细胞疾病。大约12%的MDS患者年龄在50岁以下,近50%的患者对标准治疗反应不佳。心理动力疗法已被证明在治疗躯体疾病和医学上无法解释的症状方面特别有效。目的:本研究报告了一个临床病例,小组心理治疗结合标准治疗,使MDS患者的血液学参数和治疗反应得到改善。方法:1例确诊为特发性难治性骨髓增生症的48岁男性患者,接受依生成素(40000 IU/ml,每周2次)和维生素B12 (1 g/天)治疗。这位患有抑郁和强迫症状的病人,自愿开始了一项基于人类出生理论的团体心理治疗,这是一种促进临床医生关注可治愈性和活力的框架。结果:患者的心理和医疗状况逐渐改善。治疗两年后,血液学指标开始改善,四年后达到稳定的正常范围。心理评估(贝克抑郁量表和贝克焦虑量表)显示治疗后显著改善。6年零5个月后,病人完成了心理治疗。4个月后,药物治疗停止,临床持续稳定。结论:本病例提示临床医生的态度和可治愈性观念对患者对治疗的心理反应至关重要。鉴于精神合并症对治疗效果和疾病进展的潜在负面影响,心理干预可以被视为综合治疗方法的一部分。基于人类出生理论的心理治疗可能通过培养患者更重要的心理反应而提供具体的好处,这符合其基本原则。
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引用次数: 0
Correlates of multicaregiving and singular caregiving among cancer caregivers and associations with caregiver well-being. 癌症照护者多重照护和单一照护的相关性及其与照护者幸福感的关系。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-01-19 DOI: 10.1080/07347332.2025.2450253
Katrina R Ellis, Youngmee Kim, Kelli Peterman, Hillary Hecht, Rachel Cannady, Kassandra Alcaraz

Purpose: Compare demographic, care provision, and health-related characteristics of individuals fulfilling multiple illness-related caregiving roles (i.e. multicaregiving) versus singular (cancer only) caregiving and investigate factors associated with caregivers' mental and physical functioning.

Design: Cross-sectional national survey.

Participants: Family caregivers who self-reported illness-related caregiving for cancer survivors only (singular caregivers: n = 465) or for one or more family members with illnesses in addition to the cancer survivors (multicaregivers: n = 109).

Methods: Descriptive, logistic, and linear regression analysis.

Findings: Singular caregivers and multicaregivers were similar on demographic, care provision, and health characteristics. Caregiving group was not associated with caregivers' mental or physical functioning. Several caregiver and care recipient characteristics were associated with mental and physical functioning for singular caregivers; however, only age was associated with multicaregivers' mental functioning.

Conclusions: Uncovering correlates of multicaregiving can help describe who may serve in these roles and how concurrent care responsibilities may influence caregivers' well-being.

目的:比较实现多种疾病相关护理角色(即多重护理)与单一(仅癌症)护理的个体的人口统计学、护理提供和健康相关特征,并调查与护理者精神和身体功能相关的因素。设计:横断面全国调查。参与者:自我报告仅为癌症幸存者提供疾病相关护理的家庭护理者(单个护理者:n = 465)或除癌症幸存者外还为一个或多个患有疾病的家庭成员提供护理的家庭护理者(多护理者:n = 109)。方法:描述性、logistic和线性回归分析。结果:单一照顾者和多照顾者在人口统计学、护理提供和健康特征上相似。照顾组与照顾者的精神或身体功能无关。一些照顾者和被照顾者的特征与单一照顾者的精神和身体功能有关;然而,只有年龄与多赠予者的心理功能有关。结论:揭示多重照顾的相关因素可以帮助描述谁可能担任这些角色,以及同时照顾的责任如何影响照顾者的幸福感。
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引用次数: 0
Participants' perceptions support the coexistence of benefits and burdens of cancer clinical trial participation. 参与者的看法支持癌症临床试验参与的益处与负担并存。
IF 1.5 4区 医学 Q4 PSYCHOLOGY, SOCIAL Pub Date : 2025-01-01 Epub Date: 2024-06-22 DOI: 10.1080/07347332.2024.2366996
Kim Mooney-Doyle, Kathleen A Knafl, Liming Huang, Gwenyth R Wallen, Connie M Ulrich

Background: To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation.

Materials and methods: This sub-group analysis of 21 participants was part of a larger sequential, explanatory mixed methods study. We used Creamer's integrated approach to linking quantitative and qualitative data to assess convergence, with qualitative data explaining quantitative results. Participants were grouped into four categories based on quantitative benefit/burden scores and thematic analysis of their qualitative data was used to describe these categories.

Results: Across groups participants varied in descriptions of benefits and burdens of cancer clinical trial participation and reasons for participating. Those reporting high benefit/low burden described "seizing the opportunity to participate;" those reporting low benefit/low burden described "taking responsibility" through trial participation; those reporting low benefit/high burden described how they were "willing to endure," and those with high benefit/high burden emphasized "deciding to act."

Conclusions: Participants' qualitative descriptions of benefits and burdens were more nuanced and dynamic than reflected in their quantitative ratings. Thus, current measures may be missing important concepts, such as logistic challenges of trial participation. Our results have implications for consenting procedures and decisional support guidance offered to patients and their caregivers.

背景:为了促进成人肿瘤治疗,需要全面了解人们如何以及为何决定参加、继续参加或退出癌症临床试验。虽然定量研究结果提供了对这些益处和负担的深入了解,但它们对成人癌症患者如何评估自己的情况以及如何做出参加临床试验的决定提供的了解却很有限。这项混合方法分析的目的是将参与者对参与癌症临床试验的益处和负担的评估概念化:这项对 21 名参与者进行的分组分析是一项更大规模的顺序解释性混合方法研究的一部分。我们采用了 Creamer 的综合方法,将定量和定性数据联系起来以评估趋同性,用定性数据解释定量结果。根据定量收益/负担得分将参与者分为四类,并对他们的定性数据进行主题分析,以描述这些类别:各组参与者对参与癌症临床试验的益处和负担以及参与原因的描述各不相同。报告高获益/低负担的参与者描述了 "抓住机会参与";报告低获益/低负担的参与者描述了通过参与试验 "承担责任";报告低获益/高负担的参与者描述了他们如何 "愿意忍受",而高获益/高负担的参与者强调了 "决定行动":参与者对收益和负担的定性描述比定量评价更细致、更动态。因此,目前的测量方法可能会遗漏一些重要的概念,如参与试验的后勤挑战。我们的研究结果对同意程序以及为患者及其护理人员提供的决策支持指导具有重要意义。
{"title":"Participants' perceptions support the coexistence of benefits and burdens of cancer clinical trial participation.","authors":"Kim Mooney-Doyle, Kathleen A Knafl, Liming Huang, Gwenyth R Wallen, Connie M Ulrich","doi":"10.1080/07347332.2024.2366996","DOIUrl":"10.1080/07347332.2024.2366996","url":null,"abstract":"<p><strong>Background: </strong>To advance oncology treatment for adults, comprehensive understanding of how and why people decide to enroll in, remain in, and withdraw from cancer clinical trials is needed. While quantitative findings provide insights into these benefits and burdens, they provide limited understanding of how adults with cancer appraise their situation and approach decisions to undertake a clinical trial. The goal of this mixed methods analysis was to conceptualize participants' assessment of benefits and burdens related to cancer clinical trial participation.</p><p><strong>Materials and methods: </strong>This sub-group analysis of 21 participants was part of a larger sequential, explanatory mixed methods study. We used Creamer's integrated approach to linking quantitative and qualitative data to assess convergence, with qualitative data explaining quantitative results. Participants were grouped into four categories based on quantitative benefit/burden scores and thematic analysis of their qualitative data was used to describe these categories.</p><p><strong>Results: </strong>Across groups participants varied in descriptions of benefits and burdens of cancer clinical trial participation and reasons for participating. Those reporting high benefit/low burden described \"seizing the opportunity to participate;\" those reporting low benefit/low burden described \"taking responsibility\" through trial participation; those reporting low benefit/high burden described how they were \"willing to endure,\" and those with high benefit/high burden emphasized \"deciding to act.\"</p><p><strong>Conclusions: </strong>Participants' qualitative descriptions of benefits and burdens were more nuanced and dynamic than reflected in their quantitative ratings. Thus, current measures may be missing important concepts, such as logistic challenges of trial participation. Our results have implications for consenting procedures and decisional support guidance offered to patients and their caregivers.</p>","PeriodicalId":47451,"journal":{"name":"Journal of Psychosocial Oncology","volume":" ","pages":"88-104"},"PeriodicalIF":1.5,"publicationDate":"2025-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC12910450/pdf/","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141440974","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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Journal of Psychosocial Oncology
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