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Patient and carer experiences of living with multiple myeloma and myelodysplastic syndrome. 多发性骨髓瘤和骨髓增生异常综合征患者和护理人员的生活经历。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-11-20 DOI: 10.1002/pon.6245
Jessica Roydhouse, Deborah Thompson, Louise Nicholson, Rosemary Harrup, Julie Campbell, Kim Jose

Objective: Multiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia.

Methods: Exploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face-to-face in 2022. Thematic analysis was used.

Results: Ten groups were held with 48 participants (n = 23 with MM, n = 9 with MDS, n = 16 carers). Key themes arising from focus groups with people living with MM/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome.

Conclusion: Future work should consider what supports are required for patients acting as carers, and carer burden should not be assumed.

目的:多发性骨髓瘤(MM)和骨髓增生异常综合征(MDS)是可治疗但无法治愈的疾病,它们会严重影响患者及其护理人员的日常生活。我们试图了解生活在澳大利亚塔斯马尼亚州的人们和受这些条件影响的照顾者的经历。方法:探索性质的研究。南塔斯马尼亚的MM或MDS患者或其护理人员由血液学护士招募,并邀请他们参加焦点小组。2022年,数据收集是通过在线和面对面的小组进行的。采用专题分析。结果:共分为10组,共48例(MM组23例,MDS组9例,护理人员16例)。与MM/MDS患者进行的焦点小组讨论的主要主题是:(1)关系和支持;(2)积极的态度;(3)条件感知;(4)症状和合并症。一些患有MM/MDS的人由于护理疾病不得不承担照顾他们的护理者的角色。护理人员焦点小组提出的主要主题包括(1)支持关系;(2)适应变化;(3)自身需求。并非所有的照顾者都认为他们的照顾角色是负担。结论:今后的工作应考虑作为照护者的患者需要哪些支持,不应承担照护者的负担。
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引用次数: 0
Factors influencing human papillomavirus vaccination uptake in European women and adolescents: A systematic review and meta-analysis. 影响欧洲妇女和青少年接种人乳头瘤病毒疫苗的因素:一项系统综述和荟萃分析。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-11-06 DOI: 10.1002/pon.6242
Nicoleta-Monica Jiboc, Andrei Paşca, Diana Tăut, Adriana-Smaranda Băban

Objective: Cervical Cancer (CC) lingers as a severe public health issue due to low vaccination coverage and poor screening addressability. Hence, this systematic review explored psychological factors influencing the Human Papilloma Virus (HPV) vaccination uptake in European women.

Methods: As of September 2022, PubMed, EMBASE, Scopus, and Web of Science were systematically searched to include English studies assessing diverse factors influencing vaccination uptake in European women. Only studies comparing vaccinated with unvaccinated women were included. Quality assessment, publication attrition assessment, and sensitivity analyses were performed.

Results: Eighteen studies were included, totaling a population of 18,611 participants. Results indicated that knowledge about HPV infection could positively influence vaccination rates with an Odds Ratio (OR) of 1.82 and a confidence interval (CI) between 1.27 and 2.61, showing statistical significance at a Z value of 3.24 with a p-value of 0.001. Neither knowledge about HPV vaccination (OR = 1.39, CI: 0.73-2.65, Z = 1.01, p = 0.31) nor knowledge about CC screening (OR = 1.05, CI: 0.55-1.98, Z = 0,14, p = 0.89) seem to affect vaccination rates. Regardless, intention to undertake CC screening (CCS) showed an OR = 1.68 in favor of the group intending to perform it, with a CI between 1.37 and 2.07, showing statistical significance at a Z = 4.94 and p = 0.00001. Other aspects affecting vaccination uptake were fear of side effects, insufficient information, and belief that chances of being infected are low.

Conclusions: Results demonstrated that diverse aspects could affect the vaccination intent, while personalized interventions focusing on population and country characteristics need to be assembled to mitigate vaccination coverage.

目的:癌症因疫苗接种率低、筛查可及性差,一直是一个严重的公共卫生问题。因此,本系统综述探讨了影响欧洲女性接种人类乳头瘤病毒(HPV)疫苗的心理因素。方法:截至2022年9月,系统搜索PubMed、EMBASE、Scopus和Web of Science,包括评估影响欧洲女性疫苗接种率的各种因素的英文研究。只包括比较接种疫苗和未接种疫苗的妇女的研究。进行了质量评估、出版物流失评估和敏感性分析。结果:纳入了18项研究,共有18611名参与者。结果表明,对HPV感染的了解可以积极影响疫苗接种率,比值比(OR)为1.82,置信区间(CI)在1.27和2.61之间,Z值为3.24,p值为0.001,具有统计学意义。对HPV疫苗接种的了解(OR=1.39,CI:0.73-2.65,Z=1.01,p=0.31)和对CC筛查的了解(OR=1.05,CI:0.55-1.98,Z=0.14,p=0.89)似乎都不会影响疫苗接种率。无论如何,进行CC筛查(CCS)的意向显示OR=1.68,有利于打算进行CC筛查的组,CI在1.37和2.07之间,在Z=4.94和p=0.00001时显示出统计学意义。影响疫苗接种率的其他方面是担心副作用、信息不足以及认为被感染的几率很低。结论:研究结果表明,不同方面可能会影响疫苗接种意向,而需要针对人口和国家特征进行个性化干预,以降低疫苗接种覆盖率。
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引用次数: 0
Cancer-related stress in childhood cancer survivorship: Prevalence and associations with perceptions of health risks and quality of life. 儿童癌症幸存者中的癌症相关压力:患病率及其与健康风险和生活质量认知的关联
IF 3.3 2区 医学 Q2 ONCOLOGY Pub Date : 2024-01-01 Epub Date: 2023-11-27 DOI: 10.1002/pon.6253
Alexandra C Himelhoch, Anna L Olsavsky, Eva L Darow, Keagan G Lipak, Ansley E Kenney, Rachel S Fisher, Kemar V Prussien, Kathryn A Vannatta, Bruce E Compas, Cynthia A Gerhardt

Objective: Limited research has characterized cancer-related stress (CRS) among families of childhood cancer survivors. We examined the prevalence of CRS among survivors and caregivers, as well as its association with health risk perceptions (i.e., prognosis, risk for diminished quality of life) and views of survivor quality of life (QoL).

Methods: At five years post-diagnosis or relapse, survivors (n = 100; Mage  = 15.84 years; 89% White), mothers (n = 127), and fathers (n = 59) reported their CRS. Perceived prognosis and risk for diminished QoL were rated on a 0%-100% visual analogue scale, while the PedsQL assessed QoL.

Results: CRS was low (M = 1.6-1.8, scale: 1-4); mothers reported greater stress than survivors, p = 0.038, d = 0.25. There was an indirect effect of survivors' perceived prognosis on their QoL through CRS, CI = 0.04 to 0.25, R2  = 0.32. Among mothers, there was an indirect effect of perceived prognosis/risk for diminished QoL on their reports of survivor QoL through CRS, CI = 0.03 to 0.23 and -0.15 to -0.03, R2  = 0.28 and 0.32, respectively. There were no indirect effects among fathers.

Conclusions: CRS may be an important, modifiable factor that could improve survivors' QoL. Research is needed to examine how CRS changes over time to assess the utility of interventions among female survivors, mothers, and those with lower prognosis estimates.

目的:有限的研究表征了儿童癌症幸存者家庭中的癌症相关应激(CRS)。我们研究了幸存者和照顾者中CRS的患病率,以及其与健康风险认知(即预后、生活质量下降的风险)和幸存者生活质量(QoL)观点的关系。方法:在诊断或复发后5年,幸存者(n = 100;法师= 15.84岁;89%白人),母亲(n = 127)和父亲(n = 59)报告了他们的CRS。感知预后和生活质量降低的风险以0%-100%的视觉模拟量表评定,而PedsQL评估生活质量。结果:CRS较低(M = 1.6 ~ 1.8,量表:1 ~ 4);母亲报告的压力比幸存者更大,p = 0.038, d = 0.25。通过CRS,幸存者感知预后对其生活质量有间接影响,CI = 0.04 ~ 0.25, R2 = 0.32。在母亲中,感知预后/生活质量降低风险对她们通过CRS报告的幸存者生活质量有间接影响,CI分别为0.03 ~ 0.23和-0.15 ~ -0.03,R2分别为0.28和0.32。在父亲之间没有间接影响。结论:CRS可能是一个重要的、可改变的因素,可以改善幸存者的生活质量。需要研究CRS如何随时间变化,以评估干预措施在女性幸存者、母亲和预后较低的患者中的效用。
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引用次数: 0
Breast cancer screening motivation and behaviours of women aged over 75 years. 75 岁以上妇女的乳腺癌筛查动机和行为。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-12-18 DOI: 10.1002/pon.6268
Virginia Dickson-Swift, Joanne Adams, Evelien Spelten, Irene Blackberry, Carlene Wilson, Eva Yuen

Objective: In Australia, breast screening is offered free every two years to women aged 50-74 years. Women aged ≥75 are eligible to receive a free mammogram but do not receive an invitation. This study aimed to explore the motivations and behaviours of women living in Australia aged ≥75 years regarding ongoing breast cancer screening given the public health guidance.

Methods: Sixty women aged ≥75 were recruited from metropolitan, regional, and rural areas across Australia to participate in a descriptive qualitative study. Semi-structured interviews were used to seek reflection on women's experience of screening, any advice they had received about screening beyond 75, their understanding of the value of screening and their intention to participate in the future. Thematic analysis of transcripts led to the development of themes.

Results: Themes resulting from the study included: reasons to continue and discontinue screening, importance of inclusivity in the health system and availability of information. Regular screeners overwhelmingly wished to continue screening and had strong beliefs in the benefits of screening. Women received limited information about the benefits or harms of screening beyond age 75 and very few had discussed screening with their Primary Healthcare Provider. No longer receiving an invitation to attend screening impacted many women's decision-making.

Conclusion: More information via structured discussion with health professionals is required to inform women about the risks and benefits of ongoing screening. No longer being invited to attend screening left many women feeling confused and for some this led to feelings of discrimination.

目的:在澳大利亚,每两年为 50-74 岁的女性提供一次免费的乳腺筛查。年龄≥75岁的妇女有资格接受免费乳房X光检查,但没有收到邀请。本研究旨在探讨澳大利亚≥75 岁的妇女在公共卫生指南的指导下进行乳腺癌筛查的动机和行为:从澳大利亚的大都市、地区和农村地区招募了 60 名年龄≥75 岁的妇女参与描述性定性研究。研究采用半结构式访谈,旨在了解妇女的筛查经历、她们收到的有关 75 岁以上筛查的建议、她们对筛查价值的理解以及她们今后参与筛查的意向。通过对访谈记录进行主题分析,得出了一些主题:研究得出的主题包括:继续筛查和停止筛查的原因、医疗系统包容性的重要性以及信息的可获得性。绝大多数定期筛查者希望继续筛查,并坚信筛查的益处。妇女获得的有关 75 岁以后筛查的益处或危害的信息有限,很少有妇女与其初级医疗保健提供者讨论过筛查问题。许多妇女不再收到参加筛查的邀请,这影响了她们的决策:结论:需要通过与医疗专业人员进行有组织的讨论获得更多信息,以便让妇女了解持续筛查的风险和益处。不再受邀参加筛查让许多妇女感到困惑,有些妇女还因此受到歧视。
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引用次数: 0
Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents. 与一般人群相比,长期儿童癌症幸存者的父母创伤后生长:来自瑞士儿童癌症幸存者研究-父母的报告。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-12-04 DOI: 10.1002/pon.6246
Julia Baenziger, Katharina Roser, Luzius Mader, Anica Ilic, Ursula M Sansom-Daly, André O von Bueren, Eva Maria Tinner, Gisela Michel

Objective: Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG.

Methods: CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable.

Results: In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth.

Conclusions: Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.

目的:创伤后成长(PTG)描述创伤事件后感知到的积极变化。我们描述了(i)长期儿童癌症幸存者的父母(ccs -父母)与一般人群中相似年龄儿童的父母(比较父母)的PTG, (ii)瑞士人口的规范数据,以及(iii)与PTG相关的心理,社会经济和事件相关特征。方法:ccs -父母(诊断时年龄≤16岁,研究时年龄≥20岁,在瑞士儿童癌症登记处(ChCR)登记,瑞士人口参与了一项基于纸张的调查,包括PTG-Inventory(总分0-105)。我们进行了(i) t检验,(ii)描述性统计,以及(iii)以幸存者/家庭为聚类变量的多水平回归模型。结果:共有494名幸存者(诊断后中位时间为24(7-40)年)中的746名ccs父母(41.7%为父亲,应答率= 42.3%),411名比较父母(42.8%为父亲,312户)和1069名瑞士人口(40.7%为男性,应答率= 20.1%)参与研究。ccs组家长的平均[M]总PTG M = 52.3,对照组家长M = 50.4, p = 0.078;瑞士人口M = 44.5)。ccs父母在“与他人的关系”(18.4比17.3,p = 0.010)、“精神改变”(3.3比3.0,p = 0.038)和“对生活的欣赏”(9.3比8.4,p = 0.027)方面的表现高于对照父母,但在“新的可能性”和“个人力量”方面没有表现出来。女性、年龄较大、创伤后应激程度较高、心理韧性较高与PTG呈正相关。那些不被归类为创伤性事件的人也报告了成长。结论:我们的研究结果强调,在孩子患病多年后,父母可能会经历更快的成长。能够敏感地预示新的可能性和个人发展的潜力可能有助于支持父母发展希望感。
{"title":"Post-traumatic growth in parents of long-term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study-Parents.","authors":"Julia Baenziger, Katharina Roser, Luzius Mader, Anica Ilic, Ursula M Sansom-Daly, André O von Bueren, Eva Maria Tinner, Gisela Michel","doi":"10.1002/pon.6246","DOIUrl":"10.1002/pon.6246","url":null,"abstract":"<p><strong>Objective: </strong>Post-traumatic growth (PTG) describes perceived positive changes following a traumatic event. We describe (i) PTG in parents of long-term childhood cancer survivors (CCS-parents) compared to parents of similar-aged children of the general population (comparison-parents), (ii) normative data for the Swiss population, and (iii) psychological, socio-economic, and event-related characteristics associated with PTG.</p><p><strong>Methods: </strong>CCS-parents (aged ≤16 years at diagnosis, ≥20 years old at study, registered in the Childhood Cancer Registry Switzerland (ChCR), and the Swiss population responded to a paper-based survey, including the PTG-Inventory (total score 0-105). We carried out (i) t-tests, (ii) descriptive statistics, and (iii) multilevel regression models with survivor/household as the cluster variable.</p><p><strong>Results: </strong>In total, 746 CCS-parents (41.7% fathers, response-rate = 42.3%) of 494 survivors (median time since diagnosis 24 (7-40) years), 411 comparison-parents (42.8% fathers, 312 households), and 1069 individuals of the Swiss population (40.7% male, response-rate = 20.1%) participated. Mean [M] total PTG was in CCS-parents M = 52.3 versus comparison-parents M = 50.4, p = 0.078; and in the Swiss population M = 44.5). CCS-parents showed higher 'relating-to-others' (18.4 vs. 17.3, p = 0.010), 'spiritual-change' (3.3 vs. 3.0, p = 0.038) and 'appreciation-of-life' (9.3 vs. 8.4, p = 0.027) than comparison-parents, but not in 'new-possibilities' and 'personal-strength'. Female gender, older age, higher post-traumatic stress, and higher resilience were positively associated with PTG. Individuals reporting events not typically classified as traumatic also reported growth.</p><p><strong>Conclusions: </strong>Our findings highlight that mothers and fathers can experience heightened growth many years after their child's illness. Being able to sensitively foreshadow the potential for new-possibilities and personal development may help support parents in developing a sense of hope.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138478366","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}
引用次数: 0
Global trends in psycho-oncology research investments 2016-2020: A content analysis. 2016-2020 年全球肿瘤心理研究投资趋势:内容分析。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-12-23 DOI: 10.1002/pon.6273
Isabella Conti, Mitchell Davidson, Ramsey I Cutress, Stuart A McIntosh, Michael G Head

Objective: An estimated one-third of cancer patients experience a clinically significant psychological disorder, however it is unclear to what extent this is reflected in research funding. To address this a systematic analysis the allocation of psycho-oncology research funding globally between 2016 and 2020 was conducted.

Methods: A global dataset of 66,388 cancer research awards, from 2016 to 2020 inclusive and totalling $24.5 billion USD was assembled from public and philanthropic funders. Each award was previously categorised by cancer site type and research theme, including psychosocial research and these awards were further sub-categorised for this analysis.

Results: There was $523m of funding awarded for psychological research across 1122 studies: 2.14% of all cancer research funding during this period ($24.5 billion). Median funding per award was $97,473 (IQR $36,864 - $453,051). Within psychological research, mental health received most funding ($174m, 33.5% of psychological funding). Cognitive behavioural therapy (CBT) focused research was the specific psychological support with the highest proportion of funding at $14 million. By country of funder, the USA provided most investment ($375.5 m, 71.8%).

Conclusions: Psycho-oncology research received relatively little funding, for example, when compared with pre-clinical cancer research. There needs to be a shift from pre-clinical science to research that benefits cancer patients in the shorter-term. Low- and middle-income countries, and ethnic minorities in higher-income settings, were underrepresented despite having a large cancer burden, indicating inequities that need to be addressed.

目的:据估计,三分之一的癌症患者会出现具有临床意义的心理障碍,但目前还不清楚研究经费在多大程度上反映了这一点。为了解决这一问题,我们对 2016 年至 2020 年全球肿瘤心理研究经费的分配情况进行了系统分析:方法:从公共和慈善资助者处收集了全球 66388 项癌症研究奖项的数据集,时间跨度从 2016 年至 2020 年(含 2020 年),总金额达 245 亿美元。每个奖项之前都按癌症部位类型和研究主题(包括社会心理研究)进行了分类,本分析对这些奖项进行了进一步细分:共有 1122 项研究获得了 5.23 亿美元的心理研究资助,占同期癌症研究资助总额(245 亿美元)的 2.14%。每项研究经费的中位数为 97,473 美元(IQR 为 36,864 - 453,051 美元)。在心理学研究中,心理健康获得的资助最多(1.74 亿美元,占心理学资助的 33.5%)。以认知行为疗法(CBT)为重点的研究是获得资助比例最高的专项心理支持,达 1400 万美元。从资助国来看,美国提供的投资最多(3.755 亿美元,占 71.8%):结论:与临床前癌症研究相比,肿瘤心理研究获得的资金相对较少。需要从临床前科学研究转向能在短期内使癌症患者受益的研究。低收入和中等收入国家以及高收入国家的少数族裔尽管癌症负担沉重,但却没有得到足够的资助,这表明存在不公平现象,需要加以解决。
{"title":"Global trends in psycho-oncology research investments 2016-2020: A content analysis.","authors":"Isabella Conti, Mitchell Davidson, Ramsey I Cutress, Stuart A McIntosh, Michael G Head","doi":"10.1002/pon.6273","DOIUrl":"10.1002/pon.6273","url":null,"abstract":"<p><strong>Objective: </strong>An estimated one-third of cancer patients experience a clinically significant psychological disorder, however it is unclear to what extent this is reflected in research funding. To address this a systematic analysis the allocation of psycho-oncology research funding globally between 2016 and 2020 was conducted.</p><p><strong>Methods: </strong>A global dataset of 66,388 cancer research awards, from 2016 to 2020 inclusive and totalling $24.5 billion USD was assembled from public and philanthropic funders. Each award was previously categorised by cancer site type and research theme, including psychosocial research and these awards were further sub-categorised for this analysis.</p><p><strong>Results: </strong>There was $523m of funding awarded for psychological research across 1122 studies: 2.14% of all cancer research funding during this period ($24.5 billion). Median funding per award was $97,473 (IQR $36,864 - $453,051). Within psychological research, mental health received most funding ($174m, 33.5% of psychological funding). Cognitive behavioural therapy (CBT) focused research was the specific psychological support with the highest proportion of funding at $14 million. By country of funder, the USA provided most investment ($375.5 m, 71.8%).</p><p><strong>Conclusions: </strong>Psycho-oncology research received relatively little funding, for example, when compared with pre-clinical cancer research. There needs to be a shift from pre-clinical science to research that benefits cancer patients in the shorter-term. Low- and middle-income countries, and ethnic minorities in higher-income settings, were underrepresented despite having a large cancer burden, indicating inequities that need to be addressed.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138885978","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}
引用次数: 0
Existential distress among family caregivers of patients with advanced cancer: A systematic review and meta-analysis. 晚期癌症患者的家庭照顾者存在焦虑:系统回顾和荟萃分析。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-11-20 DOI: 10.1002/pon.6239
Charlotte Walbaum, Rebecca Philipp, Karin Oechsle, Anneke Ullrich, Sigrun Vehling

Objective: Caregiving for a loved one is challenging and requires significant resources. Existential distress in family caregivers may include hopelessness, demoralization, fear of death, pre-loss grief, or a sense of not being emotionally prepared. The aim of this systematic review is to synthesize the quantitative literature on existential distress among family caregivers of patients with advanced cancer, focusing on its prevalence, association with mental disorders, as well as with sociodemographic, disease, and treatment-related factors.

Methods: We systematically searched electronic databases for quantitative studies of the above-described existential distress concepts in family caregivers of patients with advanced cancer. Two independent reviewers extracted data and evaluated study quality. Data were analyzed using random-effects meta-analysis.

Results: We retrieved 17.587 records, of which 31 studies fulfilled inclusion criteria. 63% of the studies (n = 20) provided sufficient data for meta-analysis for 5558 patients. We found an overall pooled prevalence of 30.6% for existential distress, 95% CI [24.2-37.0]. For existential distress subconcepts, prevalence rates were 57.0%, 95% CI [37.8-76.2], for death anxiety, 13.9%, 95% CI [10.8-17.0], for demoralization, 24.0%, 95% CI [18.0-30.0], for pre-loss grief, 18.4%, 95% CI [4.0-32.7], for hopelessness, 35.2%, 95% CI [28.2-42.2], for loneliness, and 35.6%, 95% CI [13.0-58.3], for emotional unpreparedness.

Conclusions: Approximately one third of the respondents were affected by high levels of existential distress. The review provides evidence for further development of support services that can reduce existential distress, focused on death anxiety, and improve the quality of life for family caregivers of patients with advanced cancer.

目的:照顾一个所爱的人是具有挑战性的,需要大量的资源。家庭照顾者存在的痛苦可能包括绝望、士气低落、对死亡的恐惧、失去亲人前的悲伤或情感上没有准备的感觉。本系统综述的目的是综合有关晚期癌症患者家庭照顾者存在焦虑的定量文献,重点关注其患病率、与精神障碍的关系,以及与社会人口统计学、疾病和治疗相关因素的关系。方法:系统地检索电子数据库,对晚期癌症患者家属照顾者的上述存在窘迫概念进行定量研究。两名独立审稿人提取数据并评估研究质量。数据分析采用随机效应荟萃分析。结果:共检索到17.587篇文献,其中31篇符合纳入标准。63%的研究(n = 20)为5558例患者提供了足够的数据进行meta分析。我们发现存在性焦虑的总体总患病率为30.6%,95% CI[24.2-37.0]。存在痛苦子概念的患病率为57.0%,95% CI[37.8-76.2],死亡焦虑为13.9%,95% CI[10.8-17.0],士气低落为24.0%,95% CI[18.0-30.0],丧失前悲伤为18.4%,95% CI[4.0-32.7],绝望为35.2%,95% CI[28.2-42.2],孤独为35.6%,95% CI[13.0-58.3],情绪准备不足。结论:大约三分之一的受访者受到高水平存在性痛苦的影响。该综述为进一步开发支持服务提供了证据,这些支持服务可以减少存在的痛苦,重点关注死亡焦虑,并改善晚期癌症患者的家庭照顾者的生活质量。
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引用次数: 0
Factors associated with self-perceived burden among terminally ill cancer patients. 晚期癌症患者自我认知负担的相关因素
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-11-30 DOI: 10.1002/pon.6258
Sun Hyun Kim, Min Seok Seo, In Cheol Hwang, Hong Yup Ahn
{"title":"Factors associated with self-perceived burden among terminally ill cancer patients.","authors":"Sun Hyun Kim, Min Seok Seo, In Cheol Hwang, Hong Yup Ahn","doi":"10.1002/pon.6258","DOIUrl":"10.1002/pon.6258","url":null,"abstract":"","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138462252","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}
引用次数: 0
Enablers and barriers to accessing self-management support services for those living with and beyond cancer: A qualitative study using the theoretical domains framework. 为癌症患者和患者提供自我管理支持服务的促进因素和障碍:一项使用理论领域框架的定性研究。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-12-04 DOI: 10.1002/pon.6254
Nickola D Pallin, Sheena M McHugh, Márcia Carvalho, Josephine Hegarty, Roisin M Connolly, John P Browne

Background: Supporting those living with and beyond cancer to self-manage their health can optimise health-related quality of life and reduce symptom burden. Self-management support (SMS) programmes have been shown to be effective, but uptake is often low. This qualitative study aimed to identify experienced and perceived enablers and barriers to accessing SMS services among those who had completed primary cancer treatment and were living with and beyond cancer.

Methods: Participants were recruited through social media and cancer advocacy groups. Semi-structured telephone and online interviews were conducted. Transcripts were coded inductively based on participants' reported experiences. Statements related to factors that enable or inhibit access to SMS were then mapped to the Theoretical Domains Framework (TDF).

Results: Twenty-six people participated. Six themes explain the factors that act as barriers and enablers which mapped to 11 TDF domains. Lack of knowledge of available SMS was a prominent barrier, as well as inaccessible services due to timing and place of delivery. Lack of confidence and emotional factors including fear were barriers to seeking SMS. Social influences shaped knowledge, attitudes and readiness to access SMS. Perceptions of SMS service goals and if in alignment with self-identity, intentions and goals also shaped decisions around accessing support.

Conclusions: While lack of knowledge and provider signposting were common barriers, findings suggest that other psychosocial and emotional factors may be barriers, even if SMS services are accessible. Findings are relevant for oncology healthcare services developing strategies to increase reach of SMS for those living with and beyond cancer.

背景:支持癌症患者自我管理自己的健康,可以优化与健康相关的生活质量,减轻症状负担。自我管理支持(SMS)方案已被证明是有效的,但使用率往往很低。这项定性研究旨在确定那些完成了原发性癌症治疗并患有癌症或超越癌症的人获得短信服务的经验和感知的促成因素和障碍。方法:通过社交媒体和癌症倡导团体招募参与者。进行了半结构化的电话和在线访谈。根据参与者报告的经历对转录本进行归纳编码。然后将与启用或禁止访问SMS的因素相关的陈述映射到理论领域框架(TDF)。结果:26人参与。六个主题解释了作为障碍和促进因素的因素,这些因素映射到11个TDF域。缺乏可用短信的知识是一个突出的障碍,以及由于交付时间和地点而无法获得的服务。缺乏自信和包括恐惧在内的情感因素是寻求短信的障碍。社会影响影响了获取SMS的知识、态度和准备程度。对短信服务目标的感知,以及是否与自我认同、意图和目标相一致,也影响了获得支持的决定。结论:虽然缺乏知识和提供者路标是常见的障碍,但研究结果表明,即使短信服务是可获得的,其他心理社会和情感因素也可能是障碍。研究结果与肿瘤医疗保健服务制定策略有关,以增加SMS对癌症患者和非癌症患者的影响。
{"title":"Enablers and barriers to accessing self-management support services for those living with and beyond cancer: A qualitative study using the theoretical domains framework.","authors":"Nickola D Pallin, Sheena M McHugh, Márcia Carvalho, Josephine Hegarty, Roisin M Connolly, John P Browne","doi":"10.1002/pon.6254","DOIUrl":"10.1002/pon.6254","url":null,"abstract":"<p><strong>Background: </strong>Supporting those living with and beyond cancer to self-manage their health can optimise health-related quality of life and reduce symptom burden. Self-management support (SMS) programmes have been shown to be effective, but uptake is often low. This qualitative study aimed to identify experienced and perceived enablers and barriers to accessing SMS services among those who had completed primary cancer treatment and were living with and beyond cancer.</p><p><strong>Methods: </strong>Participants were recruited through social media and cancer advocacy groups. Semi-structured telephone and online interviews were conducted. Transcripts were coded inductively based on participants' reported experiences. Statements related to factors that enable or inhibit access to SMS were then mapped to the Theoretical Domains Framework (TDF).</p><p><strong>Results: </strong>Twenty-six people participated. Six themes explain the factors that act as barriers and enablers which mapped to 11 TDF domains. Lack of knowledge of available SMS was a prominent barrier, as well as inaccessible services due to timing and place of delivery. Lack of confidence and emotional factors including fear were barriers to seeking SMS. Social influences shaped knowledge, attitudes and readiness to access SMS. Perceptions of SMS service goals and if in alignment with self-identity, intentions and goals also shaped decisions around accessing support.</p><p><strong>Conclusions: </strong>While lack of knowledge and provider signposting were common barriers, findings suggest that other psychosocial and emotional factors may be barriers, even if SMS services are accessible. Findings are relevant for oncology healthcare services developing strategies to increase reach of SMS for those living with and beyond cancer.</p>","PeriodicalId":20779,"journal":{"name":"Psycho‐Oncology","volume":null,"pages":null},"PeriodicalIF":3.6,"publicationDate":"2024-01-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"138478363","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}
引用次数: 0
Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study. 卵巢癌护理人员对癌症复发的恐惧:一项定性研究。
IF 3.6 2区 医学 Q1 Psychology Pub Date : 2024-01-01 Epub Date: 2023-12-04 DOI: 10.1002/pon.6255
Kyra Webb, Louise Sharpe, Hayley Russell, Joanne Shaw

Aim: Although there is growing research exploring survivor fear of cancer recurrence (FCR), little is known about caregiver FCR. To date, examination of caregiver FCR has largely been conducted through the lens of survivor conceptualisations, limiting the development of caregiver-specific models, measures, and interventions. This study aimed to explore experiences of FCR among caregivers of people with ovarian cancer.

Methods: Semi-structured telephone interviews were conducted with caregivers of people with ovarian cancer. Participants, recruited through Ovarian Cancer Australia, also completed an online survey collecting participant and patient demographic characteristics, information about the survivor's disease and caregiver levels of FCR using the Fear of Cancer Recurrence Inventory (Caregiver) (FCRI-c). Qualitative interviews explored caregiver fears, how fears and concerns were experienced and the frequency and timing of FCR. Thematic analysis using a Framework Approach was used to analyse the results.

Results: Twenty-four caregivers (54% male) participated in an interview. Most caregivers were providing care for their partner (n = 14). Thematic analysis identified four inter-related themes and associated sub-themes: (1) Fear and uncertainty; (2) Liminality; (3) Hopelessness and (4) Caregiver's protection of the person and self (caregiver's role as protector). Underpinning these themes was an overarching fear of one's family member dying.

Conclusions: Caregivers supporting people with ovarian cancer experience worries and concerns related to cancer recurrence or progression. These experiences are conceptually different to survivor experiences. Fear of one's family member dying, and the dual nature of caregiver protection/self-protection mean it is imperative that interventions are tailored specifically to caregiver needs. Future research facilitating the development of appropriate measures and interventions is essential to reduce caregiver FCR.

目的:尽管有越来越多的研究探索幸存者对癌症复发的恐惧(FCR),但对护理者的FCR知之甚少。迄今为止,对照顾者FCR的检查主要是通过幸存者概念化的视角进行的,这限制了照顾者特定模型、措施和干预措施的发展。本研究旨在探讨卵巢癌患者照护者的FCR体验。方法:对卵巢癌患者的护理人员进行半结构化电话访谈。通过澳大利亚卵巢癌协会(Ovarian Cancer Australia)招募的参与者还完成了一项在线调查,收集了参与者和患者的人口统计学特征、幸存者疾病信息以及使用癌症复发恐惧量表(caregiver) (FCRI-c)的护理人员的FCR水平。定性访谈探讨了照顾者的恐惧,恐惧和担忧是如何经历的,以及FCR的频率和时间。使用框架方法的专题分析用于分析结果。结果:24名护理人员(54%为男性)参加了访谈。大多数照顾者为他们的伴侣提供照顾(n = 14)。专题分析确定了四个相互关联的主题和相关的分主题:(1)恐惧和不确定性;(2)文化;(3)绝望;(4)照顾者对人与自我的保护(照顾者作为保护者的角色)。支撑这些主题的是对家庭成员死亡的恐惧。结论:支持卵巢癌患者的护理人员经历了与癌症复发或进展相关的担忧和担忧。这些经历在概念上不同于幸存者的经历。对家庭成员死亡的恐惧,以及照顾者保护/自我保护的双重性质意味着干预措施必须专门针对照顾者的需求。未来的研究促进了适当措施和干预措施的发展,对于减少护理人员FCR至关重要。
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Psycho‐Oncology
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