needs

需要
  • 文章类型: Journal Article
    背景:对于许多经历严重心理健康问题的人来说,在精神科病房住院是必要的步骤。然而,住院也可能是一种压力和不安的经历。了解和解决患有精神疾病的住院患者的各种需求,以促进他们的整体福祉并支持他们的康复至关重要。
    目的:我们的目标是通过波兰网络论坛上抑郁和焦虑症患者之间的同伴互动来识别和描述与精神病院相关的个人需求,并评估这些需求是否由同龄人解决。
    方法:我们搜索了以抑郁和焦虑为重点的网络论坛,并选择了160和176个帖子的样本,分别,直到我们达到饱和.混合方法分析,包括深入的内容分析,皮尔森χ2检验,并采用φ系数对岗位进行评价。
    结果:抑郁症和焦虑症论坛最常见的需求是相同的,涉及信息(105/160,65.6%和169/393,43%,分别),社会生活(17/160,10.6%和90/393,22.9%,分别),和情感(9/160,5.6%和66/393,16.8%,分别)需求。结果表明,所分析的论坛之间的需求表达没有差异。需求是直接的(42/47,89%vs98/110,89.1%的时间为抑郁和焦虑,分别)和不完全(抑郁和焦虑的次数为27/47,57%vs86/110,78.2%,分别)由论坛用户解决。在定量分析中,我们发现与抑郁症相关的论坛有更多关于信息支持和纠正需求的帖子,愤怒的表达,寻求专业支持。相比之下,与焦虑相关的论坛有更多关于情感支持需求的帖子;社交生活;以及关于药物的信息,希望,和动机。最常见的共同表达需求是分享自己的经验和需要专业支持,具有很强的积极关联。定性分析表明,用户加入基于网络的社区,讨论他们对精神病医院的恐惧和问题。这些帖子揭示了精神病医院的4种心理和情感表现:医院是一个未知的地方,假设和需求的矛盾,精神病医院的负面表现,以及与精神病医院有关的人。帖子的语气大多是负面的,讨论围绕负面刻板印象;创伤经历;和增加焦虑的信念,震惊,和恐惧,并阻止用户住院治疗。
    结论:我们的研究表明,基于网络的论坛可以为抑郁症和焦虑症患者提供一个表达广泛需求的平台。大多数需求由同行解决,但还不够。心理健康专业人员可以通过深入了解患者的独特需求和关注点,从这些发现中受益。从而允许更有效的治疗和支持。
    BACKGROUND: Hospitalization in psychiatric wards is a necessary step for many individuals experiencing severe mental health issues. However, being hospitalized can also be a stressful and unsettling experience. It is crucial to understand and address the various needs of hospitalized individuals with psychiatric disorders to promote their overall well-being and support their recovery.
    OBJECTIVE: Our objectives were to identify and describe individual needs related to mental hospitals through peer-to-peer interactions on Polish web-based forums among individuals with depression and anxiety disorders and to assess whether these needs were addressed by peers.
    METHODS: We conducted a search of web-based forums focused on depression and anxiety and selected samples of 160 and 176 posts, respectively, until we reached saturation. A mixed methods analysis that included an in-depth content analysis, the Pearson χ2 test, and φ coefficient was used to evaluate the posts.
    RESULTS: The most frequently identified needs were the same for depression and anxiety forums and involved informational (105/160, 65.6% and 169/393, 43%, respectively), social life (17/160, 10.6% and 90/393, 22.9%, respectively), and emotional (9/160, 5.6% and 66/393, 16.8%, respectively) needs. The results show that there is no difference in the expression of needs between the analyzed forums. The needs were directly (42/47, 89% vs 98/110, 89.1% of times for depression and anxiety, respectively) and not fully (27/47, 57% vs 86/110, 78.2% of times for depression and anxiety, respectively) addressed by forum users. In quantitative analysis, we found that depression-related forums had more posts about the need for informational support and rectification, the expression of anger, and seeking professional support. By contrast, anxiety-related forums had more posts about the need for emotional support; social life; and information concerning medications, hope, and motivation. The most common co-occurrence of expressed needs was between sharing own experience and the need for professional support, with a strong positive association. The qualitative analysis showed that users join web-based communities to discuss their fears and questions about psychiatric hospitals. The posts revealed 4 mental and emotional representations of psychiatric hospitals: the hospital as an unknown place, the ambivalence of presumptions and needs, the negative representation of psychiatric hospitals, and the people associated with psychiatric hospitals. The tone of the posts was mostly negative, with discussions revolving around negative stereotypes; traumatic experiences; and beliefs that increased anxiety, shock, and fright and deterred users from hospitalization.
    CONCLUSIONS: Our study demonstrates that web-based forums can provide a platform for individuals with depression and anxiety disorders to express a wide range of needs. Most needs were addressed by peers but not sufficiently. Mental health professionals can benefit from these findings by gaining insights into the unique needs and concerns of their patients, thus allowing for more effective treatment and support.
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  • 文章类型: Journal Article
    背景:临床推理(CR)是一种至关重要的能力,可以防止患者护理中的错误。尽管发挥了重要作用,CR通常没有明确教授,即使它被教导,通常,这种能力的所有方面都不会在卫生专业教育中得到解决。最近的研究表明,有必要对学生和教师进行明确的CR教学。为了进一步发展CR的教学和学习,我们需要提高对学生和教师对CR课程的内容以及教学和评估方法的需求的理解。
    方法:并行混合方法设计,使用网络调查和半结构化访谈从学生(n调查=100;n访谈=13)和教师(n调查=112;n访谈=28)收集数据。访谈和调查包含类似的问题,以便对结果进行三角测量。这项研究是作为欧盟资助项目DID-ACT(https://did-act)的一部分进行的。欧盟)。
    结果:调查和访谈数据都强调了临床推理(CR)课程中对内容的需求,例如“收集”,解释和合成患者信息“,“生成鉴别诊断”,“制定诊断和治疗计划”和“CR的协作和跨专业方面”。人们普遍认为,基于案例的学习和模拟对于CR的教学最有用。临床和口腔检查有利于CR的评估。培训师(TTT)课程的首选格式是混合学习。调查和访谈参与者就TTT课程的内容(例如CR的教学和评估方法)也达成了一些共识。受访者对TTT课程也特别重视跨专业方面。
    结论:我们在所需内容上找到了一些共识,CR中学生和TTT课程的教学和评估方法。未来的研究可以调查CR课程对预期结果的影响,如病人护理。
    BACKGROUND: Clinical reasoning (CR) is a crucial ability that can prevent errors in patient care. Despite its important role, CR is often not taught explicitly and, even when it is taught, typically not all aspects of this ability are addressed in health professions education. Recent research has shown the need for explicit teaching of CR for both students and teachers. To further develop the teaching and learning of CR we need to improve the understanding of students\' and teachers\' needs regarding content as well as teaching and assessment methods for a student and trainer CR curriculum.
    METHODS: Parallel mixed-methods design that used web-surveys and semi-structured interviews to gather data from both students (nsurvey = 100; ninterviews = 13) and teachers (nsurvey = 112; ninterviews = 28). The interviews and surveys contained similar questions to allow for triangulation of the results. This study was conducted as part of the EU-funded project DID-ACT ( https://did-act.eu ).
    RESULTS: Both the surveys and interview data emphasized the need for content in a clinical reasoning (CR) curriculum such as \"gathering, interpreting and synthesizing patient information\", \"generating differential diagnoses\", \"developing a diagnostic and a treatment plan\" and \"collaborative and interprofessional aspects of CR\". There was high agreement that case-based learning and simulations are most useful for teaching CR. Clinical and oral examinations were favored for the assessment of CR. The preferred format for a train-the-trainer (TTT)-course was blended learning. There was also some agreement between the survey and interview participants regarding contents of a TTT-course (e.g. teaching and assessment methods for CR). The interviewees placed special importance on interprofessional aspects also for the TTT-course.
    CONCLUSIONS: We found some consensus on needed content, teaching and assessment methods for a student and TTT-course in CR. Future research could investigate the effects of CR curricula on desired outcomes, such as patient care.
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  • 文章类型: Journal Article
    移植瘤患者静脉输液存在许多心理负担问题。然而,在文献中更多地关注它的并发症,心理问题很少被关注。目的探讨肿瘤患者静脉输液港植入后的心理状态和需求,为心理干预提供有价值的参考。
    对11名静脉输液端口患者进行了半结构化访谈。Colaizzi的7步分析用于分析访谈数据。
    根据主要信息,提取了四个主题和九个子主题:(1)缺乏自我价值,(2)多重情感体验(内疚,怀疑,担心,和增益)。(3)自我管理和自我维护意识差(过度依赖医务人员,不变的家庭角色,缺乏相关知识)。(4)对未来的期望和建议(内心的期望,输液端口的建议)。
    在管植入过程中应仔细监测患者的心理状态,缓解患者的紧张和焦虑情绪,提高护理满意度和患者预后。
    UNASSIGNED: There are many problems of psychological burden in patients with tumor implanted in port of intravenous infusion. However, more attention is paid to its complications in the literature, and psychological problems are seldom concerned. The purpose of this study was to explore the psychological state and needs of tumor patients after implantation of an intravenous infusion port and provide valuable references for psychological interventions.
    UNASSIGNED: A semi-structured interview was conducted with 11 patients with intravenous infusion ports. Colaizzi\'s 7-step analysis was used to analyze the interview data.
    UNASSIGNED: According to the primary information, four themes and nine sub-themes were extracted: (1) lack of self-worth, (2) multiple emotional experiences (guilt, doubt, worry, and gain). (3) Poor self-management and self-maintenance awareness (over-reliance on medical staff, unchanged family roles, lack of related knowledge). (4) Expectations and suggestions for the future (inner expectations, suggestions for infusion ports).
    UNASSIGNED: The patient\'s psychological state should be carefully monitored during tube implantation, to relieve the patient\'s tension and anxiety and improve nursing satisfaction and patient outcomes.
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  • 文章类型: Journal Article
    目的:尽管癌症患者的支持性治疗越来越受到重视,那些患有结肠直肠癌(CRC)的人需要特别注意他们的身体,心理,精神,和社会需求。然而,在满足CRC造口幸存者的支持性护理需求方面缺乏重大进展.为了弥合这个差距,我们进行了一项前瞻性纵向研究,以追踪有造口的CRC幸存者的支持性治疗需求趋势,并确定6个月内的任何预测因素.
    方法:在大连大学附属新华医院伤口和造口门诊进行前瞻性纵向研究,重点关注有造口的CRC幸存者。共有143名参与者完成了34项简短形式支持护理需求调查(SCNS-SF34-C(普通话))和造口并发症的自我报告问卷,第三,手术后第六个月。采用重复测量的方差分析来评估支持性护理需求的过程,将广义估计方程(GEE)应用于识别SCNS的预测因子。
    结果:三个时间点的支持性护理需求和5个维度得分均有统计学意义(P<0.05)。首先对患者的评级,第三,术后第6个月,患者护理和支持得分呈下降趋势,心理需求,身体和日常生活的需要,以及卫生系统和信息需求。然而,性需求得分呈增加趋势。较高水平的支持性护理需求通常与造口术后的短时间有关,高收入水平,居民医疗保险,配偶照顾者,其他慢性疾病,和造口并发症。
    结论:术后6个月后,幸存者的支持治疗需求呈现动态趋势。通过三轮,主要需求是卫生系统和信息需求。建议整合跨学科的卫生专业人员,并建立全面的支持和护理系统,以有效满足不同阶段的多样化需求。在手术后的第一个月和第三个月,应优先考虑造口术的个人,特别是那些收入水平较高的人,员工医疗保险,配偶照顾者,其他慢性疾病,和造口并发症。
    OBJECTIVE: Although there is a growing emphasis on supportive care for cancer patients, those with colorectal cancer (CRC) who have ostomies require special attention in terms of their physical, psychological, spiritual, and social needs. However, there has been a lack of significant progress in meeting the supportive care needs of CRC survivors with ostomies. To bridge this gap, we conducted a prospective longitudinal study to track the trends in supportive care needs among CRC survivors with ostomies and identify any predictors over 6-month period.
    METHODS: A prospective longitudinal study was conducted at the wound and stoma clinic of Dalian University Affiliated Xinhua Hospital, focusing on CRC survivors with ostomies. A total of 143 participants completed self-report questionnaires on the 34-item Short-Form Supportive Care Needs Survey (SCNS-SF34-C (Mandarin)) and stoma complications at the first, third, and sixth month after surgery. ANOVA with repeated measure was utilized to assess the course of supportive care needs, with Generalized Estimating Equation (GEE) applied to identify predictors of SCNS.
    RESULTS: The supportive care needs and five dimensions scores were statistically significant at three time points (P < 0.05). The ratings of patients at the first, third, and sixth month after surgery revealed a decreasing trend in the scores for patient care and support, psychological needs, physical and daily living needs, and health system and information needs. However, the score for sexual needs showed an increased tendency. Higher levels supportive care needs were generally connected with a short duration after ostomy, high income level, resident medical insurance, spouse caregiver, other chronic disease, and stoma complications.
    CONCLUSIONS: Survivors\' supportive care needs showed a dynamic trend over 6 months after surgery. Through three rounds, the primary needs were health system and information needs. It is recommended to integrate interdisciplinary health professionals and establish a comprehensive support and care system to effectively meet the diverse needs at different stages. Priority should be given to individuals with ostomies during the first and third month after surgery, particularly those with higher income levels, employee medical insurance, spouse caregivers, other chronic diseases, and stoma complications.
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  • 文章类型: Journal Article
    背景:虽然量身定制的信息可能有可能激励卒中幸存者做出必要的生活方式改变并改善长期结果,这在不同卒中人群之间的差异尚不完全清楚.
    方法:从2022年11月到2023年5月,英国的中风幸存者,临床稳定的人,参加了一个以社区为基础的,描述性横断面研究。参与者以Likert量表从1到5对几个信息主题进行了评分,指示每个信息组与它们的相关性。数据采用Wilcoxon和SPSS卡方检验进行分析。描述性统计数据被用来检查首选的信息传递方法,定时,人员,和频率。
    结果:70名幸存者,平均年龄为67±19岁(61%为男性),被招募。幸存者强调症状的重要性,危险因素,以及住院期间的康复信息,而药物和生活方式改变信息在社区中更重要。亚组分析显示出不同的模式:首次卒中幸存者强调了社会和经济支持的重要性(急性期中位Likert评分3,慢性期中位Likert评分4;p<0.01),而既往有卒中的患者则强调卒中后驾驶和工作的信息(急性期中位Likert评分为4分,慢性期中位Likert评分为3分;p<0.05)。卒中6个月后招募的幸存者优先考虑社区照顾者支持知识(急性期中位Likert评分3.5,慢性期中位Likert评分4;p<0.01)。
    结论:幸存者的信息需求因恢复阶段等因素而异,中风类型,自诊断以来的时间,以及先前中风的存在。在开发或向中风幸存者提供信息时,考虑这些因素至关重要。
    BACKGROUND: While tailored information might have the potential to motivate stroke survivors to make essential lifestyle changes and improve long-term outcomes, how this varies among different stroke populations is not yet fully understood.
    METHODS: From November 2022 to May 2023, stroke survivors in the UK, who were clinically stable, participated in a community-based, descriptive cross-sectional study. Participants rated several information themes on a Likert scale from one to five, indicating the relevance of each information group to them. Data were analysed using Wilcoxon and chi-squared tests on SPSS. Descriptive statistics were employed for examining the preferred information delivery method, timing, personnel, and frequency.
    RESULTS: Seventy survivors, with an average age of 67 ± 19 (61% males), were recruited. Survivors emphasised the importance of symptoms, risk factors, and recovery information during hospital stay, while medication and lifestyle change information were more significant in the community. Subgroup analysis revealed distinct patterns: First-time stroke survivors highlighted the importance of social and financial support (acute phase median Likert score 3, chronic phase median Likert score 4; p < 0.01), while those with prior strokes emphasised information on driving and working after stroke (acute phase median Likert score 4, chronic phase median Likert score 3; p < 0.05). Survivors recruited after six months of stroke prioritised knowledge of carer support in the community (acute phase median Likert score 3.5, chronic phase median Likert score 4; p < 0.01).
    CONCLUSIONS: Survivors\' information needs differ depending on factors such as the recovery phase, type of stroke, time since diagnosis, and the presence of a previous stroke. Considering these factors is essential when developing or providing information to stroke survivors.
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  • 文章类型: Journal Article
    背景:埃塞俄比亚卫生部(EMOH)最近为医护人员推出了一项持续专业发展(CPD)计划,以确保他们保持必要的能力,以满足社区的健康需求。然而,关于医护人员的知识和对CPD的感知需求的信息有限。这项研究旨在评估医护人员的CPD知识,感知需求,以及与埃塞俄比亚东部相关的因素。
    方法:从2022年9月1日至2022年10月30日进行了基于医疗机构的横断面定量研究。使用简单的随机抽样技术选择了卫生设施和研究参与者。随机抽取了731名医疗保健专业人员。数据是使用根据国家CPD指南制定的自我管理问卷收集的。使用STATA统计软件包第14版进行数据分析。使用逻辑回归模型来评估预测因子与结果变量之间的关联。计算具有95%置信区间的调整后的优势比,以确定关联的强度。P值<0.05被认为是统计学上显著的。
    结果:在这项研究中,731名医护人员参加。其中,65.80%(95%CI:62.35%,69.24%)有CPD知识,79.48%(CI95%76.54,82.41)表示强烈感知需要CPD。女性医护人员[AOR:0.54(95%CI:0.37,0.78)]和缺乏互联网接入[AOR:0.68(95%CI:0.47-0.97)]是CPD知识的预测因子。年龄超过35[AOR:0.39(95%CI:0.17,0.91)]和女性[AOR:0.59(95%CI:0.40-0.87)]是强烈感知需要CPD的预测因素。
    结论:研究发现,医护人员对持续职业发展的知识水平较低。医护人员的感知需求各不相同。卫生部门和利益攸关方必须优先制定解决知识差距的战略,特别是在女性医护人员中,改善CPD资源对互联网的访问,并满足专业人员对有效实施CPD的不同需求。
    BACKGROUND: The Ethiopian Ministry of Health (EMOH) has recently introduced a Continuous Professional Development (CPD) program for healthcare workers to ensure they maintain the necessary competencies to meet the community\'s health needs. However, there is limited information on healthcare workers\' knowledge and perceived need for CPD. This study aims to assess healthcare workers\' CPD knowledge, perceived needs, and factors associated with these in eastern Ethiopia.
    METHODS: A health facility-based cross-sectional quantitative study was conducted from September 1, 2022, to October 30, 2022. Health facilities and study participants were selected using a simple random sampling technique. A total of 731 healthcare professionals were randomly selected. Data was collected using a self-administered questionnaire developed from national CPD guidelines. Data analysis was performed using the STATA statistical package version 14. A logistic regression model was used to assess the association between predictors and the outcome variable. Adjusted odds ratios with 95% confidence intervals were calculated to determine the strength of the association. A p-value < 0.05 was considered statistically significant.
    RESULTS: In this study, 731 healthcare workers participated. Among them, 65.80% (95% CI: 62.35%, 69.24%) had knowledge of CPD, and 79.48% (CI95% 76.54, 82.41) expressed a strong perceived need for CPD. Female healthcare workers [AOR: 0.54 (95% CI: 0.37, 0.78)] and lack of internet access [AOR: 0.68 (95% CI: 0.47-0.97)] were predictors of knowledge of CPD. Age above 35 [AOR: 0.39 (95% CI: 0.17, 0.91)] and being female [AOR: 0.59 (95% CI: 0.40-0.87)] were predictors of a strong perceived need for CPD.
    CONCLUSIONS: The study found that there was a low level of knowledge about Continuing Professional Development among healthcare workers. The perceived needs of healthcare workers varied. It is important for health sectors and stakeholders to prioritize developing strategies that address knowledge gaps, particularly among female healthcare workers, improve access to the Internet for CPD resources, and address the diverse needs of professionals for effective CPD implementation.
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  • 文章类型: Journal Article
    背景:居住在养老院组织中的老年人渴望获得自愿帮助,然而,他们过去在志愿服务方面的经验还不够令人满意。更好地开展志愿服务,提高服务实效,有必要更深入地了解老年人志愿服务的经验和需求。
    方法:采用目的性抽样法,从杭州两个养老院组织中抽取14名老年人,进行半结构化访谈,采用Collaizzi的七步法对数据进行分析。
    结果:养老院组织中的老年人在接受志愿服务的过程中,既有有益的经历,也有不愉快的服务经历;有益的经历包括解决问题,满足需求,感受温暖和关怀,虽然不愉快的服务经历包括使其难以真正受益的形式,缺乏组织,规律性,可持续性以及服务提供与实际需求之间的不匹配。志愿服务的需求主要集中在情感安慰上,文化和娱乐,和知识获取。
    结论:养老院组织中的老年人有不同的自愿经历,他们的志愿服务需求是多样化的。应准确评估老年人的志愿服务需求,志愿服务活动应得到重视。
    BACKGROUND: Older adults living in nursing home organizations are eager to get voluntary help, however, their past experiences with voluntary services are not satisfactory enough. To better carry out voluntary services and improve the effectiveness of services, it is necessary to have a deeper understanding of the experiences and needs of older adults for voluntary services.
    METHODS: The purposive sampling method was used to select 14 older adults from two nursing home organizations in Hangzhou and conduct semi-structured interviews, Collaizzi\'s seven-step method was used to analyze the data.
    RESULTS: Older adults in nursing home organizations have both beneficial experiences and unpleasant service experiences in the process of receiving voluntary services; Beneficial experiences include solving problems meeting needs and feeling warmth and care, while unpleasant service experiences include the formality that makes it difficult to benefit truly, lack of organization, regularity, sustainability, and the mismatch between service provision and actual demands. The needs for voluntary services mainly focuses on emotional comfort, Cultural and recreational, and knowledge acquisition.
    CONCLUSIONS: Older adults in nursing home organizations have varied voluntary experiences, and their voluntary service needs are diversified. Voluntary service needs of older adults should be accurately assessed, and voluntary service activities should be focused upon.
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  • 文章类型: Journal Article
    背景:欧洲的罕见疾病被定义为患病率低于每10,000人中5人的疾病。尽管他们个人罕见,罕见疾病的总数相当大。罕见疾病通常是慢性和复杂的,影响身体,心理,和神经健康。患有罕见疾病的人面临着诸如延迟诊断等挑战,有限的医疗支持,和财政负担。看护者,通常是家庭成员,承担重大的身体和情感负担。了解罕见疾病患者及其护理人员的经历对有效护理至关重要,但这仍然是研究不足。显然需要更好的支持和理解患者和护理人员所面临的挑战。我们的研究将探讨罕见疾病患者和罕见疾病患者的护理人员在获得医疗服务方面的经验和需求。
    目的:本研究旨在探索罕见疾病患者及其护理人员与斯洛文尼亚医疗保健提供者的经验,并创建需求和经验的理论模型。
    方法:这是一个定性的主题分析研究,使用码本方法。该研究将进行半开放式访谈,以了解罕见病患者和罕见病患者的护理人员在获得医疗服务方面的经历和需求。面试问题将基于广泛的文献综述。将使用主题分析对访谈中的数据进行分析,以确定模式并构建主题图。数据将由至少2位编码器进行分析。为了确保可靠性,将进行受访者验证,并调查阴性病例。任何差异将通过咨询整个研究团队来解决,直到达成共识。
    结果:本研究未获得特别资助。然而,作者T-由斯洛文尼亚研究与创新机构的批准号P3-0339支持。本研究获得斯洛文尼亚共和国医学伦理委员会(0120-47/2022/3)的批准,和招聘预计将于2024年5月开始,数据分析结果预计将于2025年底。
    结论:这项研究将通过探索罕见疾病患者及其照顾者的需求和经验来填补斯洛文尼亚的重要研究空白。这些结果将有助于更广泛的罕见疾病领域,并增加可以为未来研究过程和干预策略提供信息的知识。它还旨在确定对罕见疾病患者生活产生重大影响的被忽视领域。这项研究很重要,不仅因为它解决了斯洛文尼亚罕见疾病社区的迫切需求,还因为它有助于讨论以患者为中心的护理,卫生政策设计,以及在医疗保健中纳入社会心理成分。
    PRR1-10.2196/53362。
    Rare diseases in Europe are defined as diseases with a prevalence of less than 5 per 10,000 people. Despite their individual rarity, the total number of rare diseases is considerable. Rare diseases are often chronic and complex, affecting physical, mental, and neurological health. People with rare diseases face challenges such as delayed diagnosis, limited medical support, and financial burden. Caregivers, usually family members, bear significant physical and emotional burdens. Understanding the experiences of patients with rare disease and their caregivers is critical to effective care, but this is still underresearched. Better support and understanding of the challenges faced by both patients and caregivers is clearly needed. Our study will explore the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services.
    This study aims to explore the experiences of patients with rare disease and their caregivers with Slovenian health care providers and to create a theoretical model of needs and experiences.
    This is a qualitative thematic analysis study, using the codebook approach. The study will conduct semi-open-ended interviews to understand the experiences and needs of people with rare diseases and caregivers of people with rare diseases in relation to accessing health services. The interview questions will be based on an extensive literature review. Data from the interviews will be analyzed using thematic analysis to identify patterns and build a thematic map. Data will be analyzed by at least 2 coders. To ensure reliability, respondent validation will be conducted and negative cases investigated. Any discrepancies will be resolved by consulting the entire research team until a consensus is reached.
    This study was not specifically funded. However, author TČ is supported by grant number P3-0339 from the Slovenian Agency for Research and Innovation. This study was approved by the Medical Ethics Committee of the Republic of Slovenia (0120-47/2022/3), and recruitment is expected to begin in May 2024, with data analysis results anticipated by the end of 2025.
    This study will fill an important research gap in Slovenia by exploring the needs and experiences of people living with rare diseases and their caregivers. The results will contribute to the broader field of rare diseases and add knowledge that can inform future research processes and intervention strategies. It also aims to identify neglected areas that have a significant impact on the lives of people with rare diseases. This study is important not only because it addresses the immediate needs of the Slovenian rare disease community, but also because it contributes to a discussion on patient-centered care, health policy design, and the inclusion of psychosocial components in health care.
    PRR1-10.2196/53362.
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  • 文章类型: Journal Article
    背景:图像重新设定(ImRs)已被证明是一种有效的治疗儿童相关创伤引起的创伤后应激障碍(PTSD)的方法。目前的理论认为,创伤记忆的意义变化是治疗的核心。几位作者提出,需求的表达,感觉和行为可能是潜在的治愈因素,但是到目前为止,针对验证这一假设的具体研究很少。目的:在这项研究中,我们调查了抑制行动倾向的表达和需求的满足在多大程度上导致儿童早期创伤患者PTSD症状的减少。方法:使用为此目的开发的观察仪器对24个ImRs治疗的249个治疗疗程的记录进行评级,之后评分与治疗前和治疗后的症状有关,用事件影响量表修订(IES-R)评估。结果:IES-R的评分从治疗前降低到治疗后降低。在控制预处理IES-R评分的影响后,NATS的两个子量表(At-scale和N-scale)显着预测了IES-R的后处理评分:抑制作用倾向的表达越好,满足需求越好,治疗后症状越低。结论:这项关于ImRs在PTSD治疗中的潜在机制的初步研究表明,在ImRs期间,行动倾向的表达和基本需求的满足与治疗后PTSD症状的减少有关。行动和基本需求不能分开看待。后续研究可以集中在需求和行动倾向量表(NATS)的六个领域中的哪个领域对减轻PTSD症状的影响最大。有了这些信息,我们可以进一步改进ImRs协议。
    对想象的工作机制的初步研究表明,NATS是观察表达的行动趋势和满足的需求的可靠研究工具。治疗期间的行动倾向表现得越好,需求得到更好的满足,治疗后症状较低。如果在ImRs培训期间对从业人员进行专门培训,以执行导致满足基本需求的行动,这似乎很有用。
    Background: Imagery rescripting (ImRs) has shown to be an effective treatment for posttraumatic stress disorders (PTSD) resulting from childhood-related trauma. The current theory is that the change of meaning of the trauma memory is central to the treatment. Several authors have suggested that the expression of needs, feelings and actions may act as potential healing factors, but little specific research aimed at (in)validating this hypothesis has been done so far.Objective: In this study we investigated to what extent the expression of inhibited action tendencies and the fulfilling of needs lead to the reduction of PTSD symptoms in clients with early childhood trauma.Method: Recordings of 249 therapy sessions of 24 ImRs treatments were rated with an observation instrument developed for this purpose, after which the scores were related to pre and posttreatment symptoms, assessed with the Impact of Events Scale-Revised (IES-R).Results: Scores on the IES-R decreased from pretreatment to posttreatment. The two subscales of the NATS (At-scale and N-scale)significantly predicted the posttreatment scores on the IES-R after controlling for the influence of pretreatment IES-R scores: the better the expression of inhibited action tendencies and the better the fulfilling of needs, the lower the symptoms after treatment.Conclusions: This pilot study on the underlying mechanisms of ImRs in PTSD treatment has shown that the expression of action tendencies and fulfilling basic needs during ImRs are associated with a decrease in PTSD symptoms after treatment, and that actions and basic needs cannot be viewed separately. Follow-up research could focus on which of the six domains of the Needs and Action tendencies Scale (NATS) has the greatest effect on the reduction of PTSD symptoms. With this information we can further improve the ImRs protocol.
    The pilot study of working mechanisms of imaginary rescripting shows that the NATS is a reliable research tool for observing expressed action tendencies and fulfilled needs.The better the action tendencies are expressed during treatment and the better the needs are fulfilled, the lower posttreatment symptoms.It seems useful if practitioners are specifically trained during the ImRs training in performing actions that lead to the fulfilment of basic needs.
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  • 文章类型: Journal Article
    目的:虽然青少年和青年癌症(AYAs)的独特情况已成为研究和临床实践的重点,人们对他们如何在治疗阶段处理对生命的威胁知之甚少。这项研究的目的是了解挑战,应对策略,以及AYA对其疾病威胁生命的性质的需求。
    方法:对诊断为18-39岁的患者进行面对面的深入访谈。访谈是在诊断后2-5年进行的。排除仍在接受治疗或怀疑复发的患者。访谈被逐字转录,并使用定性内容分析进行分析。
    结果:15例患者(平均年龄27.33岁,九位女性)在德国一家大型综合癌症中心接受了采访。诊断前,AYAs没有面对自己的死亡,也没有癌症的经验。与危及生命的疾病和治疗的突然对抗,以及经历其他AYAs的死亡,挑战他们。恐惧,特别是关于复发和死亡,失去对自己身体的信任是即使在治疗结束后仍继续限制他们的主要情绪。对于母亲们来说,最重要的是让他们的孩子独自一人。经常提到的应对策略是希望,回避,自我舒缓,并将体验视为机会。预计医疗保健专业人员会放心,激励,开放并根据个人和当前需求提供诚实的信息。
    结论:AYAs似乎与老年患者类似,但也有其他独特的挑战,包括对危及生命的疾病缺乏经验和对幼儿的责任。这方面需要更多的研究,尽管已经很明显,AYAs在其疾病的任何可治愈阶段都需要有关生命危险的诚实和令人放心的沟通。试验注册号DRKS00030277;2022年9月27日(德国临床试验注册)。
    OBJECTIVE: While the unique situation of adolescents and young adults with cancer (AYAs) has become the focus of research and clinical practice, little is known about how they deal with the threat to life at a curative stage. The aim of this study was to obtain insight into the challenges, coping strategies, and needs of AYAs regarding the life-threatening nature of their diseases.
    METHODS: Face-to-face in-depth interviews were conducted with patients who were 18-39 years old at diagnosis. The interviews took place 2-5 years after their diagnosis. Patients who were still undergoing treatment or who were suspected of recurrence were excluded. Interviews were transcribed verbatim and analyzed using qualitative content analysis.
    RESULTS: Fifteen patients (mean age 27.33 years, nine females) were interviewed in a large comprehensive cancer center in Germany. Before diagnosis, AYAs had not faced their own mortality and had little experience with cancer. The sudden confrontation with a life-threatening disease and therapy, as well as experiencing the death of other AYAs, challenged them. Fear, particularly regarding recurrence and death, and the loss of trust in their own bodies were the major emotions that continued to limit them even after the end of treatment. For mothers, concern of leaving their young children alone was paramount. Coping strategies frequently mentioned were hope, avoidance, self-soothing, and valuing the experience as a chance. Health care professionals were expected to be reassuring, motivating, and open and to provide honest information based on individual and current needs.
    CONCLUSIONS: AYAs appear to cope with life-threats similarly to older patients but have additional unique challenges, including inexperience with life-threatening diseases and responsibility for young children. More research is needed in this area, although it is already evident that AYAs need honest and reassuring communication regarding the life-threat during any curable phases of their disease. Trial registration number DRKS00030277; September 27, 2022 (German Clinical Trials Register).
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