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The effect of hand-foot exercises on chemotherapy-induced peripheral neuropathy-related pain, falls, and quality of life in colorectal cancer: A randomized controlled trial 手足锻炼对结直肠癌患者化疗引起的周围神经病变相关疼痛、跌倒和生活质量的影响:随机对照试验
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-15 DOI: 10.1016/j.ejon.2024.102641
İlayda Eroğlu, Sevinç Kutlutürkan

Purpose

The aim of this study is to determine the effect of hand-foot exercises on chemotherapy-induced peripheral neuropathy-related pain severity, falls, and quality of life in patients with colorectal cancer.

Methods

The study was conducted in the outpatient chemotherapy unit of a public hospital between 25 April-31 December 2022. The enrolled 39 patients were randomly assigned to the intervention (n:19) and control (n:20) groups. The hand-foot exercises program was applied to the intervention group in three sessions a day and three days a week fashion for 8 weeks at home. No intervention was applied to the control group other than routine treatment and care. Data were collected through face-to-face interviews in the first interview and the 2nd, 4th, 6th, 8th weeks. The exercise program adherence of the intervention group was followed up through telephone/face-to-face interviews in weeks 1–8. Data were collected using the Numerical Pain Rating Scale, Fall Follow-Up Form, the CIPNAT scale, EORTC QLQ-C30 and EORTC QLQ-CR29 scales. Mann-Whitney U Test, Chi-square test, Wilcoxon signed test, and Friedman test were used to analyze the data.

Results

The study found that as of week 4th, the intervention group experienced less pain severity than the control group (p < 0.001); at week 8th, the peripheral neuropathy symptoms of the intervention group decreased compared to the control group (p < 0.05); at weeks 2nd,4th,6th,8th, there was no statistically significant difference in falls (p > 0.05); at week 8th, while there was no significant difference between the groups regarding colorectal cancer quality of life (p > 0.05), the overall cancer quality of life improved in the intervention group (p < 0.05).

Conclusions

The hand-foot exercises program is effective in chemotherapy-induced peripheral neuropathy-related symptoms, pain severity, and overall cancer quality of life.

Trial registration

www.clinicaltrials.gov, NCT05873829.

目的 本研究旨在确定手足运动对结直肠癌患者化疗引起的周围神经病变相关疼痛严重程度、跌倒和生活质量的影响。 方法 本研究于 2022 年 4 月 25 日至 12 月 31 日在一家公立医院的门诊化疗科进行。入组的 39 名患者被随机分配到干预组(19 人)和对照组(20 人)。干预组在家中进行为期8周的手足锻炼,每周三天,每天三次。对照组除常规治疗和护理外,不采取任何干预措施。数据通过第一次访谈和第 2、4、6、8 周的面对面访谈收集。在第 1-8 周,通过电话/面对面访谈对干预组坚持运动计划的情况进行跟踪。数据收集采用了数字疼痛评分量表、秋季随访表、CIPNAT量表、EORTC QLQ-C30和EORTC QLQ-CR29量表。结果研究发现,第 4 周时,干预组的疼痛严重程度低于对照组(P < 0.001);第 8 周时,干预组的周围神经病变症状较对照组有所减轻(P < 0.05);第 2、4、6、8 周时,干预组与对照组在跌倒方面无统计学差异(P > 0.05);第8周时,虽然干预组与对照组在结直肠癌生活质量方面无显著差异(p >0.05),但干预组的整体癌症生活质量有所提高(p <0.05)。结论手足锻炼计划对化疗引起的周围神经病变相关症状、疼痛严重程度和整体癌症生活质量有效。试验注册www.clinicaltrials.gov,NCT05873829。
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引用次数: 0
Journey towards resiliency: A systematic review and meta-synthesis of cancer patients’ experiences 韧性之旅:癌症患者经历的系统回顾与元综合
IF 2.7 3区 医学 Q1 NURSING Pub Date : 2024-06-13 DOI: 10.1016/j.ejon.2024.102640
Xiu Wen Khok , Wai Hung Daniel Ng , Ang Yun Lee , Hyo Jin Yoon , M Kamala Devi , Bridget Johnston , Wei How Darryl Ang

Purpose

This systematic review and meta-synthesis seeks to explore cancer patients’ journey towards resiliency. The secondary aim of this review is to identify unique resilience protective factors among cancer patients.

Methods

A thorough search was conducted in eight electronic databases and the grey literature for published or unpublished qualitative and mixed methods studies. Studies that explored resilience among cancer patients were included. The studies were appraised using the Critical Appraisal Skill Programme Checklist. The overall certainty of evidence was further evaluated using the Grading of Recommendations, Assessment, Development, and Evaluation's Confidence in Evidence from Reviews of Qualitative Research. Themes identified were synthesized using Sandelowski and Barroso's meta-synthesis method.

Results

A total of 34 studies comprising 987 cancer patients were included in this review. Three themes and nine subthemes were generated from the meta-synthesis. The themes were: (1) Confronting the cancer diagnosis, (2) personal adaptations to cancer, and (3) drawing strength from others. The findings highlighted how individuals overcame cancer adversities through resilience, which is influenced by various factors, including life experiences, social-cultural stigmas, spirituality, social support networks, coping strategies, motivation, acceptance of illness, positive mindset, and engagement with healthcare facilities.

Conclusions

This review highlights the role of resilience in a cancer patient's journey. It emphasizes on the importance of building resilience in both cancer patients and survivors to effectively overcome the challenges of their cancer diagnosis. These insights are essential for developing interventions that promote resilience and improve existing psychosocial oncology services. Future research should focus on longitudinal studies to better understand how resilience evolves and pinpoint factors that can further influence one's resilience.

目的 本系统综述和荟萃分析旨在探讨癌症患者的复原力历程。方法 在八个电子数据库和灰色文献中对已发表或未发表的定性和混合方法研究进行了全面检索。纳入了探讨癌症患者复原力的研究。研究采用批判性评估技能计划核对表进行评估。使用 "推荐、评估、发展和评价分级"(Grading of Recommendations, Assessment, Development, and Evaluation's Confidence in Evidence from Reviews of Qualitative Research)对证据的整体确定性进行了进一步评估。采用桑德洛夫斯基和巴罗佐的元综合法对确定的主题进行了综合。元综合法产生了三个主题和九个次主题。这些主题是(1) 面对癌症诊断,(2) 个人对癌症的适应,以及 (3) 从他人身上汲取力量。研究结果强调了个人如何通过抗逆力克服癌症逆境,抗逆力受到各种因素的影响,包括生活经历、社会文化污名、灵性、社会支持网络、应对策略、动机、对疾病的接受程度、积极心态以及与医疗机构的接触。它强调了培养癌症患者和幸存者的抗逆力以有效克服癌症诊断带来的挑战的重要性。这些见解对于制定促进抗逆力的干预措施和改善现有的社会心理肿瘤学服务至关重要。未来的研究应侧重于纵向研究,以更好地了解抗逆力是如何演变的,并找出可进一步影响个人抗逆力的因素。
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引用次数: 0
Information needs of women with BRCA mutations regarding cancer risk management and decision-making BRCA 基因突变妇女在癌症风险管理和决策方面的信息需求
IF 2.7 3区 医学 Q1 NURSING Pub Date : 2024-06-07 DOI: 10.1016/j.ejon.2024.102627

Purpose

Providing women who have tested positive for a pathogenic variant in BRCA1 or BRCA 2 relevant information can help them to make informed decisions about managing their cancer risk. However, there is a lack of targeted informational support for BRCA positive women specific to the Irish context. The objective of this study is to identify the information needs of women diagnosed with a pathogenic variant in BRCA1 or BRCA 2 regarding cancer risk management and decision-making.

Methods

This is a descriptive qualitative study. Participants were recruited using purposive sampling and included women with a pathogenic variant in BRCA1 or BRCA2 without a history of breast or ovarian cancer. Two focus groups were held with women (n = 16) to enable them to generate ideas and understanding of their shared information needs. In addition, ten individual interviews were conducted to capture the additional perspectives of health care and relevant policy stakeholders. Interviews were analysed using inductive coding (Braun and Clarke, 2006), with NVivo software (Qsr international, 1999).

Results

Three main themes were identified, Cancer Risk Management, Receiving Information, and Implications to Health and Wellbeing. BRCA-positive women expressed a need for information about managing their cancer risk. They were particularly concerned with managing the impact of cancer risk-reducing interventions on their psychological and physical health, wellbeing, and family life. Many women felt they had to advocate for themselves to get treatment and receive information. Participants expressed a need for a comprehensive informational resource where all relevant information related to BRCA risk management could be accessed at a single location.

Conclusion

This study suggests that women diagnosed with a pathogenic variant in BRCA1 or BRCA2 in Ireland need more accessible information about managing their cancer risk, and the impact of a BRCA diagnosis on their family, health and wellbeing. These results will be used to identify relevant content for developing an informational decision aid for Irish women.

目的为 BRCA1 或 BRCA2 致病变异检测呈阳性的妇女提供相关信息,可以帮助她们在控制癌症风险方面做出明智的决定。然而,爱尔兰缺乏针对 BRCA 阳性妇女的有针对性的信息支持。本研究的目的是确定被诊断出患有 BRCA1 或 BRCA2 致病变异的妇女在癌症风险管理和决策方面的信息需求。通过有目的的抽样招募参与者,包括患有 BRCA1 或 BRCA2 致病变异且无乳腺癌或卵巢癌病史的妇女。我们与妇女(n = 16)举行了两次焦点小组讨论,使她们能够产生想法并了解她们共同的信息需求。此外,还进行了 10 次个别访谈,以了解医疗保健和相关政策利益相关者的其他观点。采用归纳编码法(Braun 和 Clarke,2006 年)和 NVivo 软件(Qsr International,1999 年)对访谈进行了分析。结果确定了三大主题:癌症风险管理、接受信息以及对健康和福祉的影响。BRCA 阳性女性表示需要有关管理癌症风险的信息。她们尤其关注降低癌症风险的干预措施对其身心健康、幸福和家庭生活的影响。许多妇女认为,她们必须为自己争取治疗和信息。这项研究表明,爱尔兰被诊断出患有 BRCA1 或 BRCA2 致病性变异的妇女需要更多有关管理其癌症风险以及 BRCA 诊断对其家庭、健康和幸福的影响的信息。这些结果将用于确定相关内容,以便为爱尔兰妇女开发信息决策辅助工具。
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引用次数: 0
Rehabilitation including structured active play intervention for preschoolers with cancer during treatment: A RePlay qualitative study of parents’ experiences 为学龄前癌症儿童提供康复治疗,包括有组织的积极游戏干预:RePlay 对家长经验的定性研究
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-07 DOI: 10.1016/j.ejon.2024.102639
Anna Pouplier , Martin Kaj Fridh , Jan Christensen , Amalie Høyer , Peter Schmidt-Andersen , Helle Winther , Hanne Bækgaard Larsen

Purpose

Preschool children receiving cancer treatment experience decreased gross motor function and challenges in personal and social development. For preschoolers, parents are critical for their child's cancer treatment trajectory, including their participation in physical activity. This study aimed to explore the parents' experiences with a novel rehabilitation intervention, including structured active play for preschoolers with cancer during treatment.

Method

Through criterion sampling, 23 parents of 18 preschool children diagnosed with cancer were interviewed from August 2021 until April 2023. A hermeneutic-phenomenological-inspired inductive thematic analysis was performed.

Results

Based on 19 interviews with parents, three themes emerged: 1) pushing in the right direction, 2) sharing the responsibility, and 3) creating joyful experiences. The parents experienced that participation in the intervention resulted in physical progress for their child, and the child generally could develop personally and socially. The parents shared a common goal with a healthcare professional, who led the way in their child's physical development and gave them the space to participate with their child. The child actively chose to participate in structured active play, resulting in an altered perception of the hospital experience for both parents and children.

Conclusion

The parents’ experiences showed that with the support, knowledge, and expertise of an exercise professional, rehabilitation including structured active play can be a way to integrate movement and physical activity for preschoolers in their cancer treatment trajectory. The repetitive structure of the active play sessions was experienced as motivating for the children and simultaneously challenging their physical, social, and personal development.

Trial and protocol registration

ClinicalTrials.gov: NCT04672681. Registered December 17, 2020. https://clinicaltrials.gov/ct2/show/NCT04672681.

目的接受癌症治疗的学龄前儿童会出现粗大运动功能下降以及个人和社会发展方面的挑战。对于学龄前儿童来说,父母对其癌症治疗轨迹至关重要,包括他们参与体育活动的情况。本研究旨在探讨家长对一种新型康复干预措施的体验,包括在治疗期间为学龄前癌症儿童提供有组织的积极游戏。方法通过标准抽样法,从 2021 年 8 月至 2023 年 4 月对 18 名学龄前癌症儿童的 23 名家长进行了访谈。结果根据与家长的 19 次访谈,得出了三个主题:1)朝着正确方向推进;2)分担责任;3)创造快乐体验。家长们体验到,参与干预活动使孩子的身体得到了进步,孩子的个人和社交能力普遍得到了发展。家长与医护人员有着共同的目标,医护人员在孩子的身体发育方面起到了引导作用,并为家长提供了与孩子共同参与的空间。结论:家长们的经历表明,在运动专业人员的支持、知识和专业技能的帮助下,包括有组织的积极游戏在内的康复活动可以将学龄前儿童的运动和体育锻炼融入到他们的癌症治疗过程中。积极游戏课程的重复性结构激发了孩子们的积极性,同时也对他们的身体、社交和个人发展提出了挑战:NCT04672681。https://clinicaltrials.gov/ct2/show/NCT04672681.
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引用次数: 0
A survey of UK nurses about their care of people with malignant fungating wounds 对英国护士护理恶性发霉伤口患者情况的调查。
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-01 DOI: 10.1016/j.ejon.2024.102609
Susy Pramod , Jo Dumville PhD , Gill Norman PhD , Jacqui Stringer

Purpose

To gain an understanding of the nursing professionals who treat people with malignant fungating wounds (MFW) in the UK and their current practices, including perceived barriers and facilitators to providing MFW care.

Method

An online anonymous questionnaire was created with questions about the role of nursing professionals who reported caring for patients with MFW, the number of people with MFW they regularly cared for, treatment aims, treatments used, and challenges faced. These questions were developed with professional input and piloted. Using a convenience sampling method, we collected responses from UK nurses by distributing the questionnaire via social media and through relevant professional organisations. The questionnaire was constructed in QualtricsXM software and analysed using SPSS.

Result

We received 154 questionnaire responses, with three-quarters from tissue viability nurses and the rest from community and other specialist nurses. The most important treatment aim reported was pain management, followed by odour management. Almost all respondents used antimicrobial and standard dressings for these patients, with a range of products reported. Poor access to MFW care training and lack of local and national guidelines were reported as barriers to providing care for people with MFW. Availability of dressings, access to training, and good communication processes were reported as facilitators.

Conclusion

This is the first study to explore MFW wound care practices in the UK. A range of nurses are involved in care delivery with variations in the treatments used. Lack of access to MFW care training, resources, and standardised guidelines may impede care delivery.

目的:了解英国治疗恶性真菌性伤口(MFW)患者的护理专业人员及其当前的做法,包括提供 MFW 护理的障碍和促进因素:方法:制作了一份在线匿名问卷,其中的问题涉及护理专业人员在护理恶性真菌性伤口患者中所扮演的角色、定期护理的恶性真菌性伤口患者人数、治疗目的、使用的治疗方法以及面临的挑战。这些问题都是根据专业人士的意见制定的,并进行了试点。我们采用便利抽样法,通过社交媒体和相关专业组织分发问卷,收集英国护士的回复。问卷使用 QualtricsXM 软件制作,并使用 SPSS.Result 进行分析:我们共收到 154 份问卷,其中四分之三来自组织存活率护士,其余来自社区和其他专科护士。据报告,最重要的治疗目的是控制疼痛,其次是控制气味。几乎所有受访者都对这些患者使用抗菌敷料和标准敷料,产品种类繁多。据报告,难以获得手足口病护理培训以及缺乏地方和国家指导方针是为手足口病患者提供护理的障碍。敷料的可用性、接受培训的机会以及良好的沟通过程则被认为是促进因素:这是第一项在英国探讨中风湿性关节炎伤口护理实践的研究。参与护理工作的护士种类繁多,使用的治疗方法也各不相同。缺乏对产妇护理的培训、资源和标准化指南可能会阻碍护理的实施。
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引用次数: 0
The effect of breathing exercises on chemotherapy-induced nausea and vomiting in autologous hematopoietic stem cell transplantation patients: A randomized controlled trial 呼吸运动对自体造血干细胞移植患者化疗引起的恶心和呕吐的影响:随机对照试验
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-01 DOI: 10.1016/j.ejon.2024.102618
Zeliha Genç , Gülbeyaz Can , Ebru Koç Uyan , Ümit Barbaros Üre

Purpose

This research was conducted as a randomized controlled study to examine the effect of breathing exercises on managing chemotherapy-related nausea and vomiting in patients who underwent autologous hematopoietic stem cell transplantation.

Methods

A randomized controlled trial design was used, including an intervention group doing breathing exercises and a control group receiving standard care for chemotherapy-induced nausea and vomiting. The sample was selected from patients hospitalized in the bone marrow transplantation unit. A total of 70 autologous hematopoietic stem cell transplantation patients (35 intervention and 35 control participants).

Several variables were evaluated, including the frequence and degree of nausea and vomiting, the patient's nutritional status, and the need for antiemetics. Data were analyzed and interpreted using Mann Whitney U, Pearson chi-square test, Independent t-test, Mann Whitney U, and multiple linear regression.

Results

It was found that there was a negative relationship between the number of breathing exercises, the number of nausea and vomiting and the severity of nausea. As the number of breathing exercises increased, the number nausea and vomiting, and severity of nausea decreased significantly (p < 0.05). It was found that the use of antiemetics decreased in the intervention group. Furthermore, it was found that the intervention group had higher daily food consumption on the 3rd, 7th, and 9th days (p < 0.05).

Conclusion

Breathing exercises were a practical approach to managing chemotherapy-related nausea and vomiting.

方法采用随机对照试验设计,包括进行呼吸练习的干预组和接受化疗引起的恶心和呕吐标准护理的对照组。样本选自骨髓移植科住院患者。共对 70 名自体造血干细胞移植患者(35 名干预组和 35 名对照组)进行了评估,其中包括恶心和呕吐的频率和程度、患者的营养状况以及是否需要止吐药等几个变量。结果发现,呼吸练习的次数、恶心和呕吐的次数以及恶心的严重程度之间存在负相关。随着呼吸运动次数的增加,恶心、呕吐次数和恶心严重程度明显下降(p < 0.05)。研究发现,干预组使用止吐药的情况有所减少。此外,研究还发现,干预组在第 3 天、第 7 天和第 9 天的日进食量较高(p < 0.05)。
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引用次数: 0
Interventions strategies and their efficacy in illness perceptions in patients with cancer: A systematic review and meta-analysis 癌症患者疾病认知的干预策略和疗效:系统回顾和荟萃分析
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-01 DOI: 10.1016/j.ejon.2024.102599
Yi Zhang , Xuan Chen , Rongyu Li , Ye Wang , Zheng Sun , Qiuping Li

Purposes

To identify intervention strategies for improving illness perception (IP) of cancer patients and/or family caregivers; and to examine the effects of IP interventions by meta-analysis.

Methods

A systematic search was performed to identify literature that focused on improving the IP of cancer patients and/or family caregivers from the establishment of eight databases to August 2023. Manual screening was also applied. The IP intervention strategies for cancer populations were synthesized basing the CSM. Meta-analysis was conducted to assess the effects of IP interventions on health outcomes. Multiple subgroup analyses of the same intervention conditions were conducted to explore the optimal IP-focused intervention.

Results

18 studies were included. 11 studies were conducted in a meta-analysis. No studies on family caregivers' IP were identified. Compared to general care, subgroup analysis revealed that IP interventions had favorable effects on cancer patients’ IP as well as quality of life and other outcomes. Six IP intervention strategies (information support, cognitive reframing, emotion adjustment, active coping, effective appraisal, and self-social identification) were generated. Meta-analysis showed that compared with theory-less studies (Z = 8.64, p < 0.01) and single delivery formats (Z = 3.66, p < 0.01), the theory-based interventions (Z = 10.86, p < 0.01) and mixed delivery formats (Z = 7.15, p < 0.01) had higher positive effects on IP outcomes.

Conclusions

The positive outcomes of IP intervention focusing on cancer patients were highlighted. IP traits and patients' and their caregivers’ needs in coping with specific cancer types should be explored before the intervention design. More IP interventions targeting cancer dyads are warranted to develop in the future.

目的确定改善癌症患者和/或家庭照护者疾病感知(IP)的干预策略;并通过荟萃分析研究IP干预的效果。方法进行系统检索,以确定从8个数据库建立到2023年8月期间有关改善癌症患者和/或家庭照护者疾病感知的文献。同时还进行了人工筛选。根据 CSM 对癌症人群的 IP 干预策略进行了综合。进行了 Meta 分析,以评估 IP 干预措施对健康结果的影响。对相同的干预条件进行了多个分组分析,以探索最佳的 IP 干预方法。对 11 项研究进行了荟萃分析。未发现有关家庭照顾者 IP 的研究。与普通护理相比,亚组分析表明,IP干预对癌症患者的IP以及生活质量和其他结果都有有利影响。研究提出了六种 IP 干预策略(信息支持、认知重塑、情绪调整、积极应对、有效评估和自我社会认同)。Meta 分析表明,与无理论研究(Z = 8.64,p <0.01)和单一实施形式(Z = 3.66,p <0.01)相比,基于理论的干预(Z = 10.86,p <0.01)和混合实施形式(Z = 7.15,p <0.01)对 IP 结果具有更高的积极影响。在干预设计之前,应探讨 IP 的特征以及患者及其护理人员在应对特定癌症类型时的需求。未来有必要开发更多针对癌症患者的干预措施。
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引用次数: 0
Dyadic coping, resilience, and quality of life in young and middle-aged couples after gynecologic cancer: An actor-partner interdependence mediation model 妇科癌症后中青年夫妇的共同应对、复原力和生活质量:行为者-伴侣相互依赖调解模型
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-01 DOI: 10.1016/j.ejon.2024.102601
Xinru Deng , Qianru Liu , Li Geng , Jiaxin Li , Meng Wang , Yinglu Wan

Purpose

To examine the effects of dyadic coping on quality of life (QoL) and the mediating role of resilience in these effects among young and middle-aged couples after gynecologic cancer (GC).

Methods

A cross-sectional study was conducted between July 2022 and June 2023 from one tertiary hospital in Wuhan, China. 240 pairs of young and middle-aged GC couples were recruited. The demographic and clinical characteristics questionnaire, the Dyadic Coping Inventory, the 10-item Connor-Davidson Resilience Scale, and the 12-item Short-Form Health Survey were used to collect data. The process of dyadic analysis was based on the actor-partner interdependence mediation model.

Results

GC patients' dyadic coping had an actor effect on both their own physical and mental QoL, while spouses' dyadic coping only exerted an actor effect on their own mental QoL. The mediating effects of resilience on the relationship between dyadic coping and QoL were identified in dyads. Moreover, spouses' dyadic coping could indirectly influence patients' QoL through their own and patients' resilience.

Conclusion

The findings confirm the dyadic relationships between dyadic coping, resilience, and QoL among young and middle-aged couples facing GC. These results suggest that it is necessary to develop couple-based interventions to improve dyadic coping and resilience, thus enhancing the QoL of both members.

目的:研究妇科肿瘤(GC)术后中青年夫妇的夫妻应对方式对生活质量(QoL)的影响,以及抗逆力在这些影响中的中介作用:一项横断面研究于2022年7月至2023年6月在武汉一家三甲医院进行。招募了 240 对中青年 GC 夫妇。研究采用了人口学和临床特征问卷、"夫妻应对量表"、10 项康纳-戴维森复原力量表和 12 项短式健康调查来收集数据。采用行为者-伙伴相互依赖中介模型进行了干系分析:结果:GC 患者的双人应对方式对其自身的身体和心理 QoL 均有影响,而配偶的双人应对方式仅对其自身的心理 QoL 有影响。抗逆力对双亲应对方式与 QoL 之间关系的中介效应在双亲中得到了确认。此外,配偶的双人应对方式可通过其自身和患者的复原力间接影响患者的 QoL:研究结果证实,在面临 GC 的中青年夫妇中,双向应对、复原力和 QoL 之间存在双向关系。这些结果表明,有必要制定以夫妻为基础的干预措施,以改善夫妻双方的应对能力和复原力,从而提高夫妻双方的 QoL。
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引用次数: 0
“A sincere ‘how are you?’ is already a sign of acknowledgement that you're there too.” - Interview study on the support needs of adolescents and young adults (AYAs) living with a parent with cancer "一句真诚的'你好吗'已经是对你也在那里的认可"。- 关于与患癌父母共同生活的青少年的支持需求的访谈研究。
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-01 DOI: 10.1016/j.ejon.2024.102602
Marthe Tulpin , Anne-Lore Scherrens , Anne Van Driessche , Lesley L. Verhofstadt , Ulrika Kreicbergs , Liesbet Goubert , Kim Beernaert

Purpose

Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support.

Methods

We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA).

Results

Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent's medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education.

Conclusions

AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs.

目的:父母罹患癌症会给整个家庭带来变化和挑战。有证据表明,后代的社会心理风险增加。对面临父母癌症的青少年的研究主要集中在这些社会心理问题上。作为一种反应,对这一人群需求的研究有所增加,因为这些知识对于制定适当的支持措施至关重要。尽管研究增加了,但一些青壮年患者的代表性仍然不足,即那些年龄超过 18 岁的患者和父母一方患有无法治愈的癌症的患者。此外,针对他们的需求,阻碍或促进他们获得和接受支持的因素也未得到充分研究。加深对这些问题的了解对于为这些年轻人制定更有效的支持干预措施至关重要。因此,我们的目标是深入了解父母一方患有癌症的亚裔青少年(包括上述代表性不足的亚群体)对支持需求的认知,以及促进或阻碍他们使用支持的认知因素:我们对 17 名父母患有任何类型和阶段癌症的亚裔美国人进行了半结构式访谈,并采用传统的定性内容分析法(QCA)对访谈结果进行了分析:结果:从数据中得出了六个主要类别,包括不同的子类别:1) 与披露相关的需求;2) 信息需求;3) 非正式支持需求;4) 有效个人应对策略需求;5) 正式支持需求;6) 影响支持需求的环境和医疗因素。青少年认为家人、朋友和老师是非正式支持的重要来源,但他们缺乏与父母同样患有癌症的同龄人的联系。他们表示需要从父母的医疗团队、(心理)医生和全科医生那里获得正式的信息和情感支持。青少 年在获得正式支持方面面临障碍。医疗服务提供者积极主动的态度以及关于现有支持的信息将有助于满足他们的需求。此外,我们还揭示了中学后教育的需求和问题:与罹患癌症的父母共同生活的亚裔青少年在家庭、学校、休闲和医院环境等多种环境中都有信息、情感和实际需求。他们认为自己的非正式和正式网络是满足这些需求的重要关键人物。
{"title":"“A sincere ‘how are you?’ is already a sign of acknowledgement that you're there too.” - Interview study on the support needs of adolescents and young adults (AYAs) living with a parent with cancer","authors":"Marthe Tulpin ,&nbsp;Anne-Lore Scherrens ,&nbsp;Anne Van Driessche ,&nbsp;Lesley L. Verhofstadt ,&nbsp;Ulrika Kreicbergs ,&nbsp;Liesbet Goubert ,&nbsp;Kim Beernaert","doi":"10.1016/j.ejon.2024.102602","DOIUrl":"10.1016/j.ejon.2024.102602","url":null,"abstract":"<div><h3>Purpose</h3><p>Parental cancer brings changes and challenges which affect the whole family. Evidence shows heightened psychosocial risk among the offspring. Research among adolescents and young adults (AYAs) facing parental cancer has mainly focused on these psychosocial problems. As a reaction, there has been an increase in research on the needs of this population, since this knowledge is crucial for developing appropriate support. Despite this increase, some AYAs are still underrepresented, namely those over eighteen years old and those who have a parent with incurable cancer. Moreover, the factors hampering or fostering access to and receipt of support addressing their needs are under-investigated. Increasing our understanding of these issues is crucial to developing more effective support interventions for these young people. Our aim was therefore to gain insight into the perceived support needs of AYAs who have a parent with cancer, including the mentioned underrepresented subgroups, and the perceived factors facilitating or hindering their use of support.</p></div><div><h3>Methods</h3><p>We conducted semi-structured interviews with 17 AYAs who have a parent with cancer of any type and stage, which were analyzed using conventional Qualitative Content Analysis (QCA).</p></div><div><h3>Results</h3><p>Six main categories emerged from the data, encompassing various subcategories: 1) Needs surrounding the time of disclosure, 2) Information needs, 3) Informal support needs, 4) Need for effective personal coping strategies, 5) Formal support needs, and 6) Contextual and medical factors affecting support needs. AYAs perceived family members, friends and teachers as important sources of informal support, but lacked contact with peers who also have a parent with cancer. They expressed a need for formal informational and emotional support from their parent's medical team, (onco)psychologists, and their general practitioner. AYAs faced barriers in accessing formal support. A proactive attitude from healthcare providers and information about available support would help them meet their needs. Furthermore, we shed new light on needs and issues in post-secondary education.</p></div><div><h3>Conclusions</h3><p>AYAs who are living with their parent with cancer experience informational, emotional, and practical needs in multiple contexts, such as the home, school, leisure and hospital environment. They identify their informal and formal network as important key figures in addressing these needs.</p></div>","PeriodicalId":51048,"journal":{"name":"European Journal of Oncology Nursing","volume":"70 ","pages":"Article 102602"},"PeriodicalIF":2.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141174143","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Association between quality of life and burden of cancer caregivers: An example in a low and middle income country 癌症护理者的生活质量与负担之间的关系:以中低收入国家为例
IF 2.8 3区 医学 Q1 NURSING Pub Date : 2024-06-01 DOI: 10.1016/j.ejon.2024.102596
Hien Thi Nguyen , Phuong Thi Ngoc Nguyen , Cheng-Kuan Lin , Phuong Minh Do

Objective

Limited knowledge on burden and quality of life (QoL) among cancer caregivers is available in low and middle income countries. This study aims to investigate the QoL, levels of burden, and their associations among Vietnamese cancer caregivers.

Methods

This study was conducted across three hospitals in Vietnam. 348 caregivers were recruited from January to June 2021. Data were collected by using socio-demographic questionnaires, the Zarit Burden Interview scale, and Caregiver Qol Cancer. The association between QoL and burden was analyzed by using multivariate linear regression.

Results

Older age (p = 0.03), employed (p = 0.01), and care more than 40 h (p = 0.007) were associated with a higher burden, respectively. QoL of financial concern had the lowest score (mean = 48.03, SD = 28.87), compared to the other subscale. Caregivers who had pre-existing health conditions, unstable work, spent more than 40 h per week, and took care dependent cancer patients were associated with a lower overall QoL score. Comparing to caregivers of no burden, those of mild burden had a lower QoL score by 10.70; while those of mild severe burden had the worse QoL (lower by 23.80 scores).

Conclusions

Perceptional burden among caregivers is associated with QoL. Further policies are recommended to protect cancer caregivers, to alleviate the caregiving burden, and thus to improve the overall QoL.

目标中低收入国家对癌症护理人员的负担和生活质量(QoL)的了解有限。本研究旨在调查越南癌症护理人员的 QoL、负担水平及其相关性。从 2021 年 1 月到 6 月,共招募了 348 名癌症护理人员。数据通过社会人口学问卷、Zarit 负担访谈量表和癌症护理者 Qol 收集。结果年龄越大(p = 0.03)、有工作(p = 0.01)、护理时间超过 40 小时(p = 0.007)的护理人员负担越重。与其他分量表相比,经济顾虑的 QoL 得分最低(平均 = 48.03,标准差 = 28.87)。已有健康状况、工作不稳定、每周工作时间超过 40 小时以及照顾依赖性癌症患者的照顾者的总体 QoL 得分较低。与无负担的照顾者相比,轻度负担的照顾者的 QoL 得分低 10.70 分;而轻度严重负担的照顾者的 QoL 更差(低 23.80 分)。建议进一步制定政策,以保护癌症护理人员,减轻其护理负担,从而提高整体 QoL。
{"title":"Association between quality of life and burden of cancer caregivers: An example in a low and middle income country","authors":"Hien Thi Nguyen ,&nbsp;Phuong Thi Ngoc Nguyen ,&nbsp;Cheng-Kuan Lin ,&nbsp;Phuong Minh Do","doi":"10.1016/j.ejon.2024.102596","DOIUrl":"10.1016/j.ejon.2024.102596","url":null,"abstract":"<div><h3>Objective</h3><p>Limited knowledge on burden and quality of life (QoL) among cancer caregivers is available in low and middle income countries. This study aims to investigate the QoL, levels of burden, and their associations among Vietnamese cancer caregivers.</p></div><div><h3>Methods</h3><p>This study was conducted across three hospitals in Vietnam. 348 caregivers were recruited from January to June 2021. Data were collected by using socio-demographic questionnaires, the Zarit Burden Interview scale, and Caregiver Qol Cancer. The association between QoL and burden was analyzed by using multivariate linear regression.</p></div><div><h3>Results</h3><p>Older age (p = 0.03), employed (p = 0.01), and care more than 40 h (p = 0.007) were associated with a higher burden, respectively. QoL of financial concern had the lowest score (mean = 48.03, SD = 28.87), compared to the other subscale. Caregivers who had pre-existing health conditions, unstable work, spent more than 40 h per week, and took care dependent cancer patients were associated with a lower overall QoL score. Comparing to caregivers of no burden, those of mild burden had a lower QoL score by 10.70; while those of mild severe burden had the worse QoL (lower by 23.80 scores).</p></div><div><h3>Conclusions</h3><p>Perceptional burden among caregivers is associated with QoL. Further policies are recommended to protect cancer caregivers, to alleviate the caregiving burden, and thus to improve the overall QoL.</p></div>","PeriodicalId":51048,"journal":{"name":"European Journal of Oncology Nursing","volume":"70 ","pages":"Article 102596"},"PeriodicalIF":2.8,"publicationDate":"2024-06-01","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"141032372","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
期刊
European Journal of Oncology Nursing
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