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A long and lonely road: Relatives' experiences of living with a person diagnosed with low-grade glioma. 漫长而孤独的道路:亲戚与被诊断为低级别神经胶质瘤的人生活的经历。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2026-01-01 Epub Date: 2025-04-17 DOI: 10.1080/09602011.2025.2490151
Kerstin Neander, Marie Elwin, Lena Ek

As low-grade gliomas (LGG) are slow-growing brain tumours, the course of the disease is hard to predict. The aim of this study was to investigate the relatives' experiences of living close to a person with LGG (grade 2). It is based on semi-structured interviews with 15 family members (60% women, mean age 47 years). The interviews were conducted by telephone three and seven years after diagnosis.The thematic analysis resulted in one overarching and recurring theme, namely the difficulties of communicating openly about what the disease entails, as well as four related themes. LGG is perceived as a scary and mysterious disease requiring new priorities to be set up in families to fulfil the needs of the person with LGG. A tangible impact is an altered relationship due to a stealthy change in the person with LGG. Living with a person with LGG for many years can be likened to travelling a long and lonely road.The relatives expressed the concern that they receive insufficient support from the healthcare system. The key clinical implication is to meet the relatives' own right to support, as well as providing information about the changeability of the disease and possible personality changes.

由于低级别胶质瘤(LGG)是一种生长缓慢的脑肿瘤,其病程很难预测。本研究的目的是调查亲属与LGG(2级)患者生活在一起的经历。它基于对15名家庭成员的半结构化访谈(60%为女性,平均年龄47岁)。在确诊后3年和7年通过电话进行访谈。专题分析的结果是一个总体和反复出现的主题,即公开交流这种疾病的后果的困难,以及四个相关主题。LGG被认为是一种可怕而神秘的疾病,需要在家庭中建立新的优先事项,以满足LGG患者的需求。一个有形的影响是由于LGG的人的隐形变化而改变的关系。和一个有LGG的人一起生活多年,就像走了一条漫长而孤独的路。亲属们对他们从医疗保健系统得到的支持不足表示担忧。关键的临床意义是满足亲属自己的支持权,以及提供有关疾病的可变性和可能的人格改变的信息。
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引用次数: 0
Mode of locomotion and other determinants of navigation ability post-stroke. 脑卒中后运动方式和其他影响导航能力的因素。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2026-01-01 Epub Date: 2025-04-17 DOI: 10.1080/09602011.2025.2490802
Erica M Barhorst-Cates, Aaron L Wong, Laurel J Buxbaum

ABSTRACTMaintaining the ability to navigate through one's environment is an important component of quality of life after cerebrovascular accidents (CVA). Yet, navigation ability is not commonly assessed in post-CVA rehabilitation, and when it is, assessment methods are quite varied. Here, we assessed navigation impairment in thirty-four individuals with left and right CVA compared to sixteen neurotypical controls. We had three primary aims, (1) to confirm the presence of route and survey learning impairment post-stroke as assessed by a real-world task, (2) to assess whether navigation impairments are more likely to be detected when assessment is performed in certain locomotion conditions (walking, wheelchair, and video), and (3) to evaluate potential underlying causes of navigation impairment. Results reveal an impairment for individuals with CVA relative to controls on the route memory task. We also observed a benefit of real-world navigation, as individuals with CVA were particularly impaired in the video condition. Heading sensitivity and, to a lesser degree, lateralized attention were two underlying abilities contributing to route memory when walking. Together these results are consistent with the importance of real-world methods of assessing navigation in stroke, and suggest the possibility that treatment of deficits in heading sensitivity may improve spatial navigation.

【摘要】脑血管事故后保持在环境中导航的能力是脑血管事故后生活质量的重要组成部分。然而,在脑血管病后康复中,导航能力的评估并不普遍,即使有评估,评估方法也多种多样。在这里,我们评估了34名左右CVA患者的导航障碍,并与16名神经正常对照组进行了比较。我们有三个主要目的:(1)通过现实世界的任务来确认卒中后路线和调查学习障碍的存在,(2)评估在特定运动条件下(步行、轮椅和视频)进行评估时是否更容易检测到导航障碍,以及(3)评估导航障碍的潜在潜在原因。结果显示,CVA个体在路线记忆任务上相对于控制组存在损伤。我们还观察到现实世界导航的好处,因为CVA患者在视频条件下特别受损。行走时,方向敏感度和较小程度的偏侧注意力是影响路线记忆的两种潜在能力。总之,这些结果与现实世界中评估中风患者导航能力的方法的重要性是一致的,并表明治疗头部敏感性缺陷可能会改善空间导航能力。
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引用次数: 0
Invisible difficulties are easily missed when visible outcomes are positive: A qualitative study of patient perspectives following acute treatments for ischaemic stroke. 当可见的结果是积极的时候,看不见的困难很容易被忽略:一项对缺血性中风急性治疗后患者观点的定性研究。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2026-01-01 Epub Date: 2025-04-23 DOI: 10.1080/09602011.2025.2492753
Sam Humphrey, Kerryn Elizabeth Pike, Brian Long, Henry Ma, Robert Bourke, Bradley J Wright, Dana Wong

We aimed to explore the perspectives of ischaemic stroke patients treated with endovascular clot retrieval (ECR), intravenous tissue plasminogen activator (t-PA), or conservative management in the early stages of stroke recovery. Thirty-one semi-structured interviews were qualitatively analysed using a reflexive thematic analysis approach. Three themes were generated: (1) Experiencing ongoing impairments after stroke; (2) Coping with life after stroke; and (3) Invisible difficulties are easily missed when visible outcomes are positive. Participants (ECR = 11, t-PA = 10, conservative management = 10; mean age = 62.9 ± 17.5; 20 male, 11 female) experienced ongoing impairments after stroke including physical problems, fatigue and sleep issues, communication difficulties, and cognitive impairment. They described these difficulties as impacting their ability to cope with life after stroke, including reduced participation, loss of independence, adjustment difficulties, and identity changes, which were associated with negative emotions. In participants with positive visible (e.g., physical) outcomes, particularly those in the ECR group, invisible difficulties were underrecognized and untreated due to a lack of services post-discharge, with this causing uncertainty in recovery. Invisible difficulties are common for all stroke survivors regardless of acute medical treatment and rehabilitation services need to place greater emphasis on managing invisible difficulties earlier in the recovery process.

我们旨在探讨缺血性脑卒中患者在脑卒中恢复早期接受血管内凝块回收(ECR)、静脉注射组织型纤溶酶原激活剂(t-PA)或保守治疗的前景。使用反身性专题分析方法对31个半结构化访谈进行定性分析。产生了三个主题:(1)中风后经历持续的损伤;(2)应对中风后的生活;(3)当看得见的结果是积极的时候,看不见的困难很容易被忽略。参与者(ECR = 11, t-PA = 10,保守管理= 10;平均年龄= 62.9±17.5岁;20名男性,11名女性)在中风后经历了持续的损伤,包括身体问题、疲劳和睡眠问题、沟通困难和认知障碍。他们将这些困难描述为影响他们应对中风后生活的能力,包括减少参与、丧失独立性、适应困难和身份改变,这些都与负面情绪有关。在具有积极可见(如身体)结果的参与者中,特别是在ECR组中,由于出院后缺乏服务,无形的困难未得到充分认识和治疗,这导致了康复的不确定性。所有中风幸存者都有看不见的困难,无论是否进行急性医疗治疗,康复服务都需要更加重视在康复过程的早期处理看不见的困难。
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引用次数: 0
Perceived need for and benefits of brain tumour specific psychological support: A longitudinal mixed methods study of the Telehealth Making Sense of Brain Tumour (Tele-MAST) programme. 对脑肿瘤特定心理支持的感知需求和益处:对了解脑肿瘤的远程保健(Tele-MAST)方案的纵向混合方法研究
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2026-01-01 Epub Date: 2025-05-07 DOI: 10.1080/09602011.2025.2499742
Tamara Ownsworth, Katarzyna Małgorzata Lion, Mark B Pinkham, Stephanie Jones, Eng-Siew Koh, Raymond Chan, Joanne M Shaw, Haryana M Dhillon, Abigail Billin

The Making Sense of Brain Tumour programme delivered via videoconferencing (Tele-MAST) demonstrated efficacy for improving mental health and quality of life in people with primary brain tumour (PBT). This study explored the perceived need for and benefits of the Tele-MAST programme, from the perspectives of individuals with PBT and family members. Individuals with PBT completed semi-structured interviews prior to Tele-MAST, after Tele-MAST, and at 3-months follow-up. Twenty-four participants (M age = 46.26, SD = 11.45; 63% high-grade glioma) commenced Tele-MAST (including 6 couples) and 16 completed the programme (67% retention). Reflexive thematic analysis identified PBT as a unique and complex illness with multiple unknowns and emotional impacts. Individuals often felt lost and cast aside in the healthcare system as they searched for understanding and hope regarding the illness. Unmet psychological support needs were typically addressed by experiencing Tele-MAST, a person-centred intervention in which the complexities of PBT were understood from the outset and individuals felt supported to cope with and find meaning in their illness. Providing early and ongoing access with longer-term support options was considered key to improving Tele-MAST. These findings underscore the value of early access to tailored psychological support delivered flexibly according to individuals' ongoing support needs and preferences.

通过视频会议(Tele-MAST)提供的“了解脑肿瘤”方案证明了对改善原发性脑肿瘤患者的精神健康和生活质量的有效性。本研究从患有PBT的个人和家庭成员的角度探讨了对电信- mast方案的感知需求和益处。PBT患者在Tele-MAST之前、Tele-MAST之后和随访3个月时完成了半结构化访谈。24名参与者(M年龄= 46.26,SD = 11.45;63%的高级胶质瘤患者开始了Tele-MAST(包括6对夫妇),16人完成了该计划(67%保留)。反身性专题分析确定PBT是一种独特而复杂的疾病,具有多种未知因素和情感影响。当人们寻求对疾病的理解和希望时,他们常常感到迷失和被医疗保健系统抛弃。未满足的心理支持需求通常通过体验Tele-MAST来解决,这是一种以人为中心的干预,从一开始就了解PBT的复杂性,个人感到得到支持,以应对疾病并找到疾病的意义。提供早期和持续的接入和长期支持选择被认为是改进Tele-MAST的关键。这些发现强调了早期获得量身定制的心理支持的价值,这些支持是根据个人的持续支持需求和偏好灵活提供的。
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引用次数: 0
Self-Instruction and rhythmic music-based intervention: A feasibility study of a novel intervention for executive functioning in traumatic brain injury. 基于自我指导和节奏音乐的干预:创伤性脑损伤执行功能新干预的可行性研究。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2025-12-29 DOI: 10.1080/09602011.2025.2607136
Irena Tasevska, Jamie Berry, Jennifer Batchelor, Kirk N Olsen, William Forde Thompson

Traumatic Brain Injury (TBI) often results in impairments to executive functioning. Self-instruction (SI) and music-based interventions have both independently shown promise in improving cognitive and executive functioning, however, they have not been studied in combination. This study explores the feasibility and potential benefits of combining rhythmic music-based intervention and SI for individuals with a history of TBI experiencing executive dysfunction. Four male participants (aged 38-64) with severe TBI participated in a twice-weekly intervention combining rhythmic music-based intervention and SI over five weeks. Participants were assessed pre- and post-intervention using the BRIEF-A for executive functioning, along with secondary measures, the Frontal Assessment Battery (FAB), Depression, Anxiety and Stress Scale (DASS-42), Seashore Rhythm Test (SRT), Letter Number Task (LNT), and Quality of Life After Brain Injury Scale (QOLIBRI). Feasibility was assessed through a questionnaire. Three of four participants reported significant improvements in behaviour regulation, and three of four informants reported observing significant improvements in participants' overall executive functioning. These findings indicate that combining rhythmic music-based intervention with SI is a feasible, well-tolerated, and potentially effective intervention for improving executive functioning in individuals with TBI. Future randomized controlled trials are needed to confirm the efficacy of the intervention.

创伤性脑损伤(TBI)通常会导致执行功能的损害。自我指导(SI)和以音乐为基础的干预都分别显示出改善认知和执行功能的希望,但它们还没有被结合起来研究。本研究探讨了将基于节奏音乐的干预与SI结合治疗有执行功能障碍的TBI患者的可行性和潜在益处。四名患有严重TBI的男性参与者(38-64岁)参加了每周两次的干预,结合了基于节奏音乐的干预和为期五周的SI。使用BRIEF-A对参与者进行干预前和干预后的执行功能评估,以及辅助测量,正面评估电池(FAB),抑郁,焦虑和压力量表(DASS-42),海滨节奏测试(SRT),字母数字任务(LNT)和脑损伤后生活质量量表(QOLIBRI)。通过问卷调查评估可行性。四分之三的参与者报告说,他们的行为规范有了显著改善,四分之三的参与者报告说,他们观察到参与者的整体执行功能有了显著改善。这些研究结果表明,将有节奏的音乐干预与SI相结合是一种可行的、耐受性良好的、潜在有效的干预措施,可以改善TBI患者的执行功能。需要未来的随机对照试验来证实干预的有效性。
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引用次数: 0
Interventions targeting executive functions in children and young people exposed to complex trauma: A systematic review. 针对复杂创伤儿童和青少年执行功能的干预措施:系统回顾。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2025-12-26 DOI: 10.1080/09602011.2025.2607143
Sophie Branch, Melanie Porter

Previous research has established that children and young people exposed to complex trauma (i.e., abuse and/or neglect; and/or domestic, family, and sexual violence) have significantly greater deficits in executive function (EF) and a higher incidence of psychopathology. Poor EF is associated with poorer academic, social, and relational outcomes across the lifespan and poorer overall wellbeing. Despite this, the efficacy of interventions aimed at remediating executive dysfunction in this population have not been established. The current PRISMA-guided systematic review aimed to critically analyse the existing evidence and inform practice guidelines for clinicians working with impacted children and young people. A systematic search identified six studies: three utilized computerized cognitive training, two utilized individual education plans, and one utilized trauma-focused cognitive behavioural therapy. Findings identified two approaches that produced significant improvements in EF and warrant further investigation with more rigorous methodology: computerized cognitive training and trauma-focused cognitive behavioural therapy. Several methodological limitations were identified, including a lack of adequate control groups, little consensus on classification of EF domains, and failure to delineate trauma type, onset, and duration. This review highlights the need for further methodologically robust research to inform clinical practice guidelines for EF interventions for young people exposed to complex trauma.

先前的研究已经确定,遭受复杂创伤(即虐待和/或忽视;和/或家庭暴力、家庭暴力和性暴力)的儿童和年轻人在执行功能(EF)方面有明显更大的缺陷,精神病理学的发病率也更高。糟糕的英语学习与一生中较差的学术、社会和人际关系结果以及较差的整体幸福感有关。尽管如此,旨在纠正这一人群执行功能障碍的干预措施的有效性尚未确定。目前由prism指导的系统评价旨在批判性地分析现有证据,并为从事受影响儿童和青少年工作的临床医生提供实践指南。系统搜索确定了6项研究:3项使用计算机化认知训练,2项使用个人教育计划,1项使用以创伤为重点的认知行为疗法。研究结果确定了两种显著改善EF的方法,值得采用更严格的方法进行进一步研究:计算机化认知训练和以创伤为重点的认知行为疗法。我们发现了几个方法学上的局限性,包括缺乏足够的对照组,对EF域的分类缺乏共识,以及未能描述创伤类型、发病和持续时间。这篇综述强调了需要进一步的方法学研究,为暴露于复杂创伤的年轻人EF干预的临床实践指南提供信息。
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引用次数: 0
The relationship between dispositional mindfulness and psychological, cognitive, and functional outcomes following mild traumatic brain injury. 性格正念与轻度创伤性脑损伤后心理、认知和功能结局的关系。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2025-12-24 DOI: 10.1080/09602011.2025.2607149
Melanie Ann Mascarenhas, Zindel V Segal, Tyler David Brown, Konstantine K Zakzanis

Background: Most individuals who sustain a mild uncomplicated Traumatic Brain Injury (mTBI) recover within 1-3 months. However, a significant proportion consistently report ongoing cognitive, psychological, and somatic sequelae, which can be functionally disabling and hinder active participation in society following injury. The present study examined dispositional mindfulness as a targetable protective factor as it pertains to psychological, cognitive, and functional outcomes in the post-acute stage of mTBI. Method. In this cross-sectional study, 45 litigating individuals with persistent symptoms in the post-acute stage following mTBI completed a comprehensive neuropsychological assessment, which included current and retrospective pre-injury ratings of the Five-Facet Mindfulness Questionnaire. Results. Mindfulness was significantly associated with depression and anxiety but not with objective cognitive performance on measures of attention or working memory. Lower mindfulness was observed in individuals who had returned to work following injury compared to those who had not, specifically in the Observing and Describing facets. Pre-injury mindfulness significantly predicted scores on the Psychiatric Impairment Rating Scale, with higher Observing scores predicting worse functioning. Future research employing experimental and longitudinal designs can further elucidate these relationships.

背景:大多数遭受轻度非复杂性外伤性脑损伤(mTBI)的个体在1-3个月内恢复。然而,相当大比例的患者持续报告认知、心理和躯体后遗症,这些后遗症可能导致功能性残疾,并阻碍他们在受伤后积极参与社会活动。本研究考察了性格正念作为一种可靶向的保护因素,因为它与mTBI急性期后的心理、认知和功能结果有关。方法。在这项横断面研究中,45名在mTBI急性期后出现持续症状的诉讼个体完成了一项全面的神经心理学评估,其中包括五方面正念问卷的当前和回顾性损伤前评分。结果。正念与抑郁和焦虑显著相关,但与注意力或工作记忆的客观认知表现无关。在受伤后重返工作岗位的个体中,正念水平较低,尤其是在观察和描述方面。损伤前正念显著预测精神障碍评定量表得分,观察得分越高,功能越差。未来的研究将采用实验和纵向设计来进一步阐明这些关系。
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引用次数: 0
Life after traumatic brain injury: A social media analysis revealing unmet needs. 创伤性脑损伤后的生活:揭示未满足需求的社交媒体分析。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2025-12-23 DOI: 10.1080/09602011.2025.2600416
Ethan D L Brown, Brett Silber, Barnabas Obeng-Gyasi, Greer M Williams, Saarang Patel, Aladine A Elsamadicy, Daniel M Sciubba, Sheng-Fu Larry Lo, Daniel Schneider

Traumatic brain injury (TBI) and concussion present ongoing challenges in symptom management and care continuity. Traditional clinical methods may overlook key patient concerns during recovery. Social media platforms such as Reddit provide unsolicited, real-world accounts of the TBI experience, offering insights underexplored in clinical research. We conducted a cross-sectional analysis of 2,024 Reddit posts from r/TBI and r/Concussion between January 2020 and May 2025. Posts were analysed using natural language processing (NLP) to identify themes related to symptoms, treatment experiences, healthcare interactions, and follow-up challenges. Statistical analyses examined discussion patterns and symptom co-occurrences. Information gaps were noted in 47.7% of posts, most often involving symptom interpretation (34.6%) and recovery timeline confusion (23.5%). Red flag symptoms, including worsening neurological deficits, were frequently reported without appropriate clinical guidance. Persistent symptoms such as mood changes (41.2%), memory issues (30.4%), and headaches (19.3%) often extended beyond the acute phase. Patients frequently described difficulty accessing appropriate care or specialist consultations. Reddit narratives reveal substantial unmet needs in post-TBI care. Leveraging social media content through NLP offers valuable insights into patient concerns, highlighting the need for improved education, follow-up, and patient centered communication in neurotrauma care.

创伤性脑损伤和脑震荡在症状管理和护理连续性方面提出了持续的挑战。传统的临床方法可能忽略了患者在康复过程中的关键问题。Reddit等社交媒体平台提供了未经请求的真实世界的TBI体验,提供了临床研究中未被探索的见解。我们对2020年1月至2025年5月期间来自r/TBI和r/Concussion的2024篇Reddit帖子进行了横断面分析。使用自然语言处理(NLP)对帖子进行分析,以确定与症状、治疗经历、医疗保健互动和后续挑战相关的主题。统计分析检查了讨论模式和症状共现。47.7%的帖子存在信息空白,最常见的是症状解释(34.6%)和恢复时间混淆(23.5%)。红旗症状,包括不断恶化的神经功能缺陷,经常在没有适当临床指导的情况下报告。持续的症状,如情绪变化(41.2%)、记忆问题(30.4%)和头痛(19.3%)通常会延续到急性期之后。患者经常描述难以获得适当的护理或专家咨询。Reddit的叙述揭示了创伤性脑损伤后护理的大量未满足需求。通过NLP利用社交媒体内容提供了对患者关注的有价值的见解,强调了在神经创伤护理中改进教育、随访和以患者为中心的沟通的必要性。
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引用次数: 0
Feasibility of combining tDCS with TMS-EEG to probe neuroplasticity in post-stroke aphasia. tDCS联合TMS-EEG探讨脑卒中后失语症神经可塑性的可行性。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2025-12-16 DOI: 10.1080/09602011.2025.2603397
Mădălina Bucur, Francesca Zambon, Alberto Pisoni, Elena Baruzzo, Silvia Casarotto, Mario Rosanova, Costanza Papagno

Increasing evidence suggests that transcranial direct current stimulation (tDCS) can enhance language outcomes in people with post-stroke aphasia. However, the neurophysiological mechanisms underlying these behavioral improvements remain insufficiently characterized.This crossover feasibility study examined the clinical and technical viability of integrating transcranial magnetic stimulation with electroencephalography (TMS-EEG) to characterize cortical excitability and network dynamics before and after real and sham tDCS in individuals with chronic post-stroke non-fluent aphasia.Eight participants were enrolled; four completed the full protocol, while four discontinued due to scheduling or technical constraints. The completers underwent eight weeks of anodal tDCS and language exercises. They tolerated the combined procedures well, with full adherence, no adverse events, and good-quality TMS-EEG recordings, confirming the protocol's feasibility.Cortical responses were quantified using global and local mean field power (GMFP, LMFP) and a regional complexity index. Behaviorally, modest language improvements were observed in two participants with Broca's aphasia. Neurophysiologically, heterogeneous modulations of cortical reactivity were observed across cases.These findings indicate that this multimodal protocol can be practically and safely implemented, with no adverse effects observed, while also underscoring logistical, technical, and clinical considerations for larger-scale studies designed to elucidate the neurophysiological mechanisms supporting tDCS-driven language recovery.

越来越多的证据表明,经颅直流电刺激(tDCS)可以提高中风后失语症患者的语言预后。然而,这些行为改善背后的神经生理机制仍然没有得到充分的描述。这项交叉可行性研究考察了经颅磁刺激与脑电图(TMS-EEG)相结合的临床和技术可行性,以表征慢性卒中后非流利性失语症患者真实和假tDCS前后的皮质兴奋性和网络动力学。8名参与者被招募;4例完成了完整的方案,4例由于时间安排或技术限制而中断。完成者接受了8周的无节点tDCS和语言练习。他们对联合治疗的耐受性良好,完全依从性,无不良事件,TMS-EEG记录质量良好,证实了方案的可行性。皮质反应使用全局和局部平均场强(GMFP, LMFP)和区域复杂性指数进行量化。从行为上看,两名布洛卡失语症患者的语言能力有了适度的改善。神经生理学上,在所有病例中观察到皮质反应性的异质性调节。这些研究结果表明,这种多模式方案可以实际和安全地实施,没有观察到不良反应,同时也强调了后勤、技术和临床方面的考虑,旨在阐明支持tdcs驱动的语言恢复的神经生理机制。
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引用次数: 0
Experience and acceptability of a guided self-help intervention for anxiety for individuals with Huntington's disease (GUIDE-HD trial): A qualitative study. 亨廷顿舞蹈症患者焦虑的指导自助干预的经验和可接受性(GUIDE-HD试验):一项定性研究。
IF 1.9 3区 心理学 Q4 NEUROSCIENCES Pub Date : 2025-12-16 DOI: 10.1080/09602011.2025.2600422
Maria Dale, Katie Melvin, Fiona Juliet Rosalind Eccles, Lee Bell-Jones, Zaynah Khan, Robert Wells, Jenny Johnson, Nicolò Zarotti, Jane Simpson

People with Huntington's disease (HD) commonly experience anxiety, yet access to psychological interventions remains limited. Guided self-help is a low-cost, scalable, evidence-based approach with the potential to improve access to psychological support. This qualitative study aimed to explore participants' experience of GUIDE-HD, a remote guided self-help intervention designed to address anxiety in people with HD based on cognitive behavioural therapy and acceptance and commitment therapy, by examining: (i) the acceptability of the intervention, (ii) any perceived benefits or challenges, and (iii) ways to enhance its relevance and accessibility for people with HD (pwHD). Qualitative individual semi-structured interviews were conducted with nine pwHD and three carers and analysed using framework analysis. Three overarching themes emerged: (1) A therapeutic journey for people with and affected by HD; (2) Mechanisms of benefit; (3) Experiencing various gains. Participants valued the intervention's relevance, structure, accessibility, personalization and facilitation. Reported gains extended beyond reduced anxiety to increased acceptance of the realities of living with and managing the condition and better relationships. While a number of limitations should be considered, such as the sample size and its predominant female representation, the GUIDE-HD intervention was acceptable and showed promise as a tailored psychological approach for pwHD.

患有亨廷顿舞蹈病(HD)的人通常会感到焦虑,但获得心理干预的机会仍然有限。有指导的自助是一种低成本、可扩展、以证据为基础的方法,有可能改善获得心理支持的机会。本定性研究旨在探讨参与者对GUIDE-HD的体验,GUIDE-HD是一种基于认知行为疗法和接受与承诺疗法的远程指导自助干预,旨在解决HD患者的焦虑问题,研究方法包括:(i)干预的可接受性,(ii)任何可感知的益处或挑战,以及(iii)增强其对HD患者(pwHD)的相关性和可及性。对9名pwHD和3名照护者进行定性个人半结构化访谈,并采用框架分析法进行分析。出现了三个主要主题:(1)HD患者和受其影响的人的治疗之旅;(2)效益机制;(3)体验各种收益。参与者评价干预措施的相关性、结构、可及性、个性化和促进性。报告的收益不仅仅是减少了焦虑,还增加了对生活和管理这种情况的现实的接受程度,以及更好的关系。虽然应该考虑到一些限制,例如样本量和主要的女性代表,但GUIDE-HD干预是可以接受的,并且有望成为针对pwHD的量身定制的心理方法。
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引用次数: 0
期刊
Neuropsychological Rehabilitation
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