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Health literacy after traumatic brain injury: characterisation and control comparison. 脑外伤后的健康素养:特征描述与对照比较。
IF 1.1 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2024-10-01 DOI: 10.1071/IB23116
Amelia J Hicks, Angelle M Sander, Dean P McKenzie, Sarah Carrier, Elinor Fraser, Bronwyn Hall, Monique R Pappadis, Jennie L Ponsford

Background Little is known about health literacy in traumatic brain injury (TBI) survivors. The aims of this study were to compare health literacy in individuals with TBI with that of a control group; to examine the association between health literacy in individuals with TBI and demographic, injury, and cognitive factors; and compare the relationship between health literacy and physical and mental health outcomes. Methods A cross-sectional observational study design was used. Adults (≥18years) were recruited from an outpatient research centre in Victoria, Australia. There were 209 participants with a complicated mild to severe TBI at least 1year previously (up to 30years 6months) and 206 control participants. Results Individuals with TBI did not have poorer health literacy than controls (IRR=1.31, P =0.102, CI95% [0.947, 1.812]). Further analysis could not be completed due to the highly skewed Health Literacy Assessment Using Talking Touchscreen Technology - Short Form (Health LiTT-SF) data. Conclusion Health literacy performance in individuals with TBI was not significantly different to controls. Premorbid education may provide a critical cognitive reserve upon which TBI survivors can draw to aid their health literacy. These findings are specific to the Health LiTT-SF measure only and require replication using more comprehensive health literacy measures in culturally diverse samples.

背景 对创伤性脑损伤(TBI)幸存者的健康素养知之甚少。本研究的目的是比较创伤性脑损伤患者与对照组的健康素养;研究创伤性脑损伤患者的健康素养与人口统计学、损伤和认知因素之间的关系;比较健康素养与身心健康结果之间的关系。方法 采用横断面观察研究设计。研究人员从澳大利亚维多利亚州的一家门诊研究中心招募成人(≥18 岁)。其中209人在至少1年前(最长30年6个月)曾受过复杂的轻度至严重创伤性脑损伤,206人属于对照组。结果 患有创伤性脑损伤者的健康素养并不比对照组差(IRR=1.31,P=0.102,CI95% [0.947,1.812])。由于使用会说话的触摸屏技术进行的健康素养评估--简表(Health LiTT-SF)数据偏差较大,因此无法完成进一步分析。结论 患有创伤性脑损伤的个体在健康素养方面的表现与对照组没有明显差异。病前教育可为创伤性脑损伤幸存者提供重要的认知储备,从而帮助他们提高健康素养。这些研究结果仅适用于 Health LiTT-SF 测量,需要在不同文化背景的样本中使用更全面的健康素养测量方法进行验证。
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引用次数: 0
The effect of cranioplasty on outcomes and complications of unresponsive wakefulness syndrome and minimally responsive state. 颅骨成形术对无反应清醒综合征和微反应状态的疗效和并发症的影响。
IF 1.1 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2024-09-01 DOI: 10.1071/IB23124
Elena Aidinoff, Hiela Lehrer, Ilana Gelernter, Ilil Dayan, Adi Kfir, Lilach Front, Ana Oksamitny, Amiram Catz

Background Studies that have shown neurological improvement following cranioplasty (CP) after decompressive craniectomy (DC) in patients with unresponsive wakefulness syndrome (UWS) and minimally conscious state (MCS) did not include control groups. The aim of this study was to assess the justification of CP for these patients. Methods Data were collected from medical records of inpatients with UWS and MCS admitted between 2002 and 2018. Results Of the 144 participants (mean age 40 years, 76% males, 75% in UWS), 37% had CP following DC. The Loewenstein Communication Scale (LCS) gain was 12±17 and 16±17 for the control and study patients, respectively. The corresponding consciousness recovery rate (based on Coma Recovery Scale-Revised scores) was 51% and 53%, respectively. One-year survival rates were 0.80 and 0.93, and 5-year survival rates were 0.67 and 0.73, respectively. Mean outcome values were higher for the study group, but the differences between the groups did not reach statistical significance. Conclusions The study did not demonstrate that CP increases brain recovery or survival. Nevertheless, it showed that CP did not decrease them either, and it did not increase complications rate. The findings, therefore, support offering CP to patients with UWS and MCS as CP does not increase risks and can achieve additional goals for these patients.

背景 研究表明,无反应清醒综合征(UWS)和微意识状态(MCS)患者在颅骨减压切除术(DC)后进行颅骨成形术(CP)可改善神经功能,但这些研究并未包括对照组。本研究旨在评估对这些患者实施 CP 的合理性。方法 从 2002 年至 2018 年期间收治的 UWS 和 MCS 住院患者的病历中收集数据。结果 在 144 名参与者(平均年龄 40 岁,76% 为男性,75% 为 UWS)中,37% 在 DC 后患有 CP。对照组和研究组患者的卢文斯坦沟通量表(LCS)增益分别为 12±17 和 16±17。相应的意识恢复率(基于昏迷恢复量表-修订版评分)分别为 51% 和 53%。一年存活率分别为 0.80 和 0.93,五年存活率分别为 0.67 和 0.73。研究组的平均结果值更高,但组间差异未达到统计学意义。结论 该研究并未证明 CP 能提高大脑恢复能力或存活率。然而,研究表明 CP 也没有降低脑恢复或存活率,也没有增加并发症的发生率。因此,研究结果支持为 UWS 和 MCS 患者提供 CP,因为 CP 不会增加风险,还能为这些患者实现额外的目标。
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引用次数: 0
Spanish translation and cross-cultural adaptation of the Box and Block Test: a pilot study in adults with chronic acquired brain injury. 盒块测验的西班牙文翻译和跨文化改编:一项针对慢性后天性脑损伤成人的试点研究。
IF 1.1 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2024-09-01 DOI: 10.1071/IB24014
María-Paula Noce, Desirée Valera-Gran, Miriam Hurtado-Pomares, Encarni Serrano-Reina, Carlos Soler-Pons, Eva-María Navarrete-Muñoz

Background The Box and Block Test (BBT) is a highly recommended outcome measure to assess unilateral gross motor activity of the upper limbs. The BBT has not previously been available in a version adapted to the Spanish context. Thus, this study aimed to cross-culturally adapt and translate the BBT's instructions and pilot test the Spanish version of BBT in adults with acquired brain injury (ABI). Methods The BBT was translated and cross-culturally adapted following standard procedures. An expert committee approved the final Spanish version of BBT and it was conceptually validated by four therapists with expertise in ABI. The tool was tested on 14 adults with ABI. Results The Spanish version of BBT included a new section of materials for the test and a record to count the number of blocks transferred from one compartment of the box to the other. Following the pilot study, a modification in terminology was implemented for referring to the dominant and non-dominant hands. Conclusions Our results suggest that the Spanish version of BBT is suitable for assessing manual dexterity in Spanish-speaking adults with ABI.

背景 框和块测试(BBT)是评估单侧上肢粗大运动活动的一种非常值得推荐的结果测量方法。此前,BBT 还没有适合西班牙情况的版本。因此,本研究旨在对 BBT 的说明进行跨文化改编和翻译,并在后天性脑损伤(ABI)成人中对西班牙语版 BBT 进行试点测试。方法 按照标准程序对 BBT 进行翻译和跨文化改编。专家委员会批准了西班牙文版 BBT 的最终版本,并由四名具有 ABI 专业知识的治疗师对其进行了概念验证。该工具在 14 名患有 ABI 的成年人身上进行了测试。结果 西班牙语版的 BBT 包括一个新的测试材料部分,以及一个用于计算从盒子的一个隔间转移到另一个隔间的积木数量的记录。在试点研究之后,对术语进行了修改,以指代惯用手和非惯用手。结论 我们的研究结果表明,西班牙语版的 BBT 适合用于评估患有 ABI 的西班牙语成人的手部灵活性。
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引用次数: 0
The development of a cognitive screening protocol for Aboriginal and/or Torres Strait Islander peoples: the Guddi Way screen. 为土著居民和/或托雷斯海峡岛民制定认知筛查方案:Guddi Way 筛查。
IF 1.1 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2024-09-01 DOI: 10.1071/IB23058
Michelle McIntyre, Jennifer Cullen, Caoilfionn Turner, India Bohanna, Ali Lakhini, Kylie Rixon

Background Many Aboriginal and/or Torres Strait Islander peoples are exposed to risk factors for cognitive impairment. However, culturally appropriate methods for identifying potential cognitive impairment are lacking. This paper reports on the development of a screen and interview protocol designed to flag possible cognitive impairments and psychosocial disability in Aboriginal and/or Torres Strait Islander adults over the age of 16years. Methods The Guddi Way screen includes items relating to cognition and mental functions across multiple cognitive domains. The screen is straightforward, brief, and able to be administered by non-clinicians with training. Results Early results suggest the Guddi Way screen is reliable and culturally acceptable, and correctly flags cognitive dysfunction among Aboriginal and/or Torres Strait Islander adults. Conclusions The screen shows promise as a culturally appropriate and culturally developed method to identify the possibility of cognitive impairments and psychosocial disability in Aboriginal and/or Torres Strait Islander adults. A flag on the Guddi Way screen indicates the need for referral to an experienced neuropsychologist or neuropsychiatrist for further assessment and can also assist in guiding support services.

背景 许多原住民和/或托雷斯海峡岛民都面临着认知障碍的风险因素。然而,目前还缺乏适合当地文化的方法来识别潜在的认知障碍。本文报告了一种筛查和访谈方案的开发情况,该方案旨在标记 16 岁以上土著居民和/或托雷斯海峡岛民成年人可能存在的认知障碍和社会心理残疾。方法 Guddi Way 筛查包括与多个认知领域的认知和心理功能有关的项目。该筛查简单明了,经过培训的非临床医生也能进行操作。结果 早期结果表明,Guddi Way 筛选结果可靠,文化上可接受,能正确显示原住民和/或托雷斯海峡岛民成年人的认知功能障碍。结论 Guddi Way 筛选是一种适合当地文化并由当地文化开发的方法,可用于识别土著居民和/或托雷斯海峡岛民成年人认知障碍和社会心理残疾的可能性。如果在 Guddi Way 筛选中出现标记,则表明需要转诊至经验丰富的神经心理学家或神经精神病学家进行进一步评估,同时也有助于指导支持服务。
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引用次数: 0
Using the Knowledge to Action framework to improve housing and support for people with Multiple Sclerosis. 利用 "从知识到行动 "框架改善多发性硬化症患者的住房和支持。
IF 1.1 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2024-08-01 DOI: 10.1071/IB23102
Lee Cubis, Sharyn McDonald, Pamela Dean, Robin Ramme, Kate D'Cruz, Megan Topping, Fiona Fisher, Di Winkler, Jacinta Douglas

Background People with Multiple Sclerosis (MS) have unique housing and support needs that are essential for maintaining independence at home; however, there is limited research to guide the design of community living options for this population. The aim of this study was to examine housing and support needs and preferences of people with MS with the intention to inform the planning of a co-designed intervention based on the study's findings. Methods Using the Knowledge to Action (KTA) framework, quantitative (n =79) and qualitative (n =6) data from people with MS were extracted and integrated from projects completed by the research team that explored the housing and support needs and preferences of people with disability. Results were synthesised and presented to a reference group for validation, contextualisation, and adaptation to the Australian context. Results High physical support needs were common across participants. People most commonly required home modifications to improve accessibility, such as ramps, equipment such as heating and cooling, and assistive technology. Many people required more than 8 hours per day of paid support. Moving into individualised housing facilitated independence and community reintegration. People reported gaps between what they wanted from support workers and what they received, citing individual and systemic barriers. Conclusion People with MS have support needs that require proactive and responsive funding arrangements, housing design and support provision. In line with KTA principles, findings will inform the planning of a co-designed intervention that involves people with lived experience of MS and other stakeholders to influence policy and improve home and living outcomes for this population.

研究背景 多发性硬化症(MS)患者有独特的住房和支持需求,这些需求对于他们在家中保持独立至关重要;然而,用于指导该人群社区生活方案设计的研究却十分有限。本研究的目的是调查多发性硬化症患者的住房和支持需求及偏好,以便在研究结果的基础上为共同设计干预措施的规划提供信息。方法 使用 "从知识到行动"(KTA)框架,从研究小组完成的项目中提取并整合了多发性硬化症患者的定量(n = 79)和定性(n = 6)数据,这些项目探讨了残疾人的住房和支持需求及偏好。研究小组对结果进行了综合,并提交给一个参考小组进行验证、背景分析和适应澳大利亚国情的调整。结果 所有参与者都有较高的物质支持需求。人们最常见的需求是对房屋进行改造,以改善无障碍环境,如坡道、供暖和制冷设备以及辅助技术。许多人每天需要 8 小时以上的有偿支持。搬入个性化的住房有助于实现独立和重新融入社区。患者表示,他们希望从支持人员那里得到的支持与他们所得到的支持之间存在差距,并提到了个人和系统性障碍。结论 多发性硬化症患者有支持需求,需要积极主动的资金安排、住房设计和支持服务。根据 KTA 原则,研究结果将为共同设计干预措施的规划提供信息,该干预措施将涉及多发性硬化症患者和其他利益相关者,以影响政策并改善该人群的家庭和生活状况。
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引用次数: 0
Applying implementation science theories to support practice change in the assessment of cognition by occupational therapists. 应用实施科学理论支持职业治疗师在认知评估方面的实践变革。
IF 1.1 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2024-08-01 DOI: 10.1071/IB23105
Jacqueline Wheatcroft, Rebecca J Nicks, Laura Jolliffe, Danielle Sansonetti, Carolyn Unsworth, Natasha A Lannin

Background Understanding cognitive impairments is essential for effective rehabilitation and discharge planning for adults with neurological conditions. The aim of this study was to identify barriers to completing standardised cognitive assessments and evaluate the implementation of an intervention to support practice change. Methods A mixed-methods approach was applied to translate cognitive assessment recommendations into clinical practice using the Theoretical Domains Framework (TDF) and the Capability, Opportunity, and Motivation Behaviour model (COM-B) theories. Occupational therapists at one metropolitan health service in Australia were invited to participate. Pre- and post-implementation file audits and surveys were conducted, along with focus groups that collected qualitative data analysed using the TDF and COM-B. Results Survey 1 (n =40) and focus group data (n =24) identified barriers in the TDF domains of knowledge (selection of assessments), environment and resources (equipment and time constraints), and social influences (pressure from other disciplines). To address barriers to implementing a cognitive assessment framework, scripts, cue cards, video-recorded training, and posters were developed as guided by the Behaviour Change Wheel (BCW). Survey 2 showed increased capability to physically administer cognitive assessments (53-74%) and improved clinician understanding of relevant clinical practice guideline (CPG) recommendations (22-50%). File audit data indicated a 30% increase in the number of standardised assessments completed. Conclusions The application of two implementation theories led to the development of an intervention that increased occupational therapists' confidence and their adherence to CPG recommendations. This study serves as a potential model for using the TDF and COM-B to create implementation interventions in various clinical practice areas.

背景 了解认知障碍对于神经系统疾病成人患者的有效康复和出院规划至关重要。本研究旨在确定完成标准化认知评估的障碍,并评估干预措施的实施情况,以支持实践变革。方法 采用混合方法,利用理论领域框架(TDF)和能力、机会和动机行为模型(COM-B)理论,将认知评估建议转化为临床实践。澳大利亚一个大都市医疗服务机构的职业治疗师应邀参加了此次研究。我们进行了实施前和实施后的档案审核和调查,并通过焦点小组收集了使用 TDF 和 COM-B 分析的定性数据。结果 调查 1(n =40)和焦点小组数据(n =24)确定了在知识(评估的选择)、环境和资源(设备和时间限制)以及社会影响(来自其他学科的压力)等 TDF 领域存在的障碍。为了解决实施认知评估框架的障碍,在行为改变轮(BCW)的指导下,开发了脚本、提示卡、视频录像培训和海报。调查 2 显示,实际实施认知评估的能力有所提高(53-74%),临床医生对相关临床实践指南 (CPG) 建议的理解也有所加深(22-50%)。档案审核数据显示,完成标准化评估的数量增加了 30%。结论 两种实施理论的应用促成了一项干预措施的开发,该措施增强了职业治疗师的信心,提高了他们对 CPG 建议的依从性。这项研究可作为使用 TDF 和 COM-B 在不同临床实践领域制定实施干预措施的潜在模型。
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引用次数: 0
Life after lockdown: loneliness, exclusion and the impact of hidden disability. 封锁后的生活:孤独、排斥和隐性残疾的影响。
IF 0.8 4区 医学 Q3 Health Professions Pub Date : 2024-06-01 DOI: 10.1071/IB23111
Chloe Bradbury, Abbey Fletcher, Stephen Dunne

Background Stroke survivors are a population at increased risk of experiencing loneliness, thus exploring the effect of lockdown measures on stroke survivors is of paramount importance. We explored the personal experiences of loneliness among stroke survivors during lockdown in the COVID-19 pandemic and the lessons that can be learned from these experiences. Methods Seventeen stroke survivors from across the United Kingdom (10 females, 7 males; 45-83years old; M age =63.47) participated in semi-structured interviews. Reflexive thematic analysis was employed in the interpretation of the data. Results Three overarching themes were constructed: (1) hidden struggles, isolated lives; (2) divergent experiences and adaptations; and (3) rebuilding after lockdown. These themes explore survivors' experiences of loneliness generally after stroke and how this loneliness was assuaged with online video conferencing and other technological solutions. They also chronicle how these feelings changed during lockdown and survivors' feelings regarding society returning to 'normal' and the associated apprehension and anxiety this brings. Conclusions We recommend a focus on improving understanding of the challenges faced after stroke to reduce stigma, increase empathy and promote inclusive attitudes within society, alongside better pandemic preparedness through engagement with hybrid support solutions.

背景 脑卒中幸存者是孤独感风险增加的人群,因此探索封锁措施对脑卒中幸存者的影响至关重要。我们探讨了在 COVID-19 大流行期间,中风幸存者在封锁期间的个人孤独体验,以及从这些体验中可以吸取的教训。方法 来自英国各地的 17 名中风幸存者(10 名女性,7 名男性;45-83 岁;平均年龄 =63.47)参加了半结构化访谈。在解读数据时采用了反思性主题分析法。结果 构建了三个首要主题:(1) 隐藏的挣扎、孤立的生活;(2) 不同的经历和适应;(3) 封锁后的重建。这些主题探讨了幸存者在中风后普遍存在的孤独感,以及这种孤独感如何通过在线视频会议和其他技术解决方案得到缓解。他们还记录了这些感受在封锁期间的变化,以及幸存者对社会恢复 "正常 "的感受和由此带来的忧虑和焦虑。结论 我们建议将重点放在提高人们对中风后所面临挑战的理解上,以减少耻辱感、增强同理心和促进社会的包容态度,同时通过参与混合支持解决方案,更好地做好大流行病的准备。
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引用次数: 0
Characterisation of young stroke presentations, pathways of care, and support for 'invisible' difficulties: a retrospective clinical audit study. 年轻卒中患者的特征、护理路径以及对 "隐形 "困难的支持:一项回顾性临床审计研究。
IF 1.1 4区 医学 Q4 CLINICAL NEUROLOGY Pub Date : 2024-06-01 DOI: 10.1071/IB23059
Michaela Grech, Toni Withiel, Marlena Klaic, Caroline A Fisher, Leonie Simpson, Dana Wong

Background Young stroke survivors are likely to be discharged home from acute hospital care without rehabilitation more quickly than older survivors, but it is not clear why. File-audit studies capturing real-world clinical practice are lacking for this cohort. We aimed to compare characteristics and care pathways of young and older survivors and describe stroke presentations and predictors of pathways of care in young survivors (≤45years), including a focus on care received for 'invisible' (cognitive, psychological) difficulties. Methods A retrospective audit of 847 medical records (67 young stroke survivors, mean age=36years; 780 older patients, mean age=70years) was completed for stroke survivors admitted to an Australian tertiary hospital. Stroke characteristics and presence of cognitive difficulties (identified through clinician opinion or cognitive screening) were used to predict length of stay and discharge destination in young stroke survivors. Results There were no differences in length of stay between young and older survivors, however, young stroke survivors were more likely to be discharged home without rehabilitation (though this may be due to milder strokes observed in young stroke survivors). For young stroke survivors, stroke severity and age predicted discharge destination, while cognitive difficulties predicted longer length of stay. While almost all young survivors were offered occupational therapy and physiotherapy, none received psychological input (clinical, health or neuropsychology). Conclusions Cognitive and psychological needs of young stroke survivors may remain largely unmet by a service model designed for older people. Findings can inform service development or models of care, such as the new Australian Young Stroke Service designed to better meet the needs of young survivors.

背景 年轻的脑卒中幸存者可能比年长的幸存者更快从急性期医院护理中出院回家,而无需进行康复治疗,但原因尚不清楚。目前还缺乏针对这一群体的真实临床实践的档案审计研究。我们旨在比较年轻幸存者和老年幸存者的特征和护理路径,并描述年轻幸存者(≤45 岁)的卒中表现和护理路径预测因素,包括重点关注 "隐形"(认知、心理)困难所接受的护理。方法 对澳大利亚一家三级医院收治的 847 名中风幸存者(67 名年轻中风幸存者,平均年龄=36 岁;780 名老年患者,平均年龄=70 岁)的病历进行回顾性审计。卒中特征和是否存在认知障碍(通过临床医生意见或认知筛查确定)用于预测年轻卒中幸存者的住院时间和出院去向。结果 年轻幸存者和年长幸存者的住院时间没有差异,但年轻中风幸存者更有可能在没有康复治疗的情况下出院回家(尽管这可能是由于年轻中风幸存者的中风程度较轻)。对于年轻的中风幸存者来说,中风的严重程度和年龄预示着出院后的去向,而认知障碍预示着更长的住院时间。几乎所有的年轻幸存者都接受了职业治疗和物理治疗,但没有人接受心理治疗(临床、健康或神经心理学)。结论 为老年人设计的服务模式可能在很大程度上无法满足中风年轻幸存者的认知和心理需求。研究结果可为服务发展或护理模式提供参考,例如旨在更好地满足年轻中风幸存者需求的新澳大利亚年轻中风服务。
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引用次数: 0
A systematic review of remotely delivered interventions to support wellbeing amongst caregivers of adults with acquired brain injuries. 对支持后天性脑损伤成人护理人员健康的远程干预措施进行系统性审查。
IF 0.8 4区 医学 Q3 Health Professions Pub Date : 2024-05-01 DOI: 10.1071/IB23099
Nils Rickardsson, Daniel Jon Stopforth, David Gillanders

Background There is a need for improved access to evidence-based interventions supporting the wellbeing of caregivers of adults with acquired brain injury (ABI). Remotely delivered interventions could address this need. The present systematic review sought to collate studies evaluating remotely delivered interventions designed to improve the wellbeing of caregivers of adults with an ABI, to summarise findings and to comment on the quality of this research. Methods Systematic searches were conducted up until December 2023. Study characteristics, populations, interventions and outcomes were outlined, and papers were appraised on methodological quality. The review was pre-registered (PROSPERO: CRD42020189235). Results Eleven studies meeting inclusion criteria were identified. Methodological quality was generally low to adequate. Most studies evaluated an intervention for caregivers of people with stroke, with a variety of types of interventions trialled. The majority of studies reported non-significant findings on wellbeing outcomes when compared to control conditions. Conclusions There is limited evidence supporting a remotely delivered intervention to improve wellbeing outcomes for ABI caregivers. Specific recommendations are provided, including the development of a core set of outcomes and replication of findings over time, which can improve research into the development and evaluation of remote interventions for this population.

背景 有必要改善循证干预措施的获取途径,以支持后天性脑损伤(ABI)成人护理者的福祉。远程干预可以满足这一需求。本系统性综述旨在整理评估旨在改善后天性脑损伤成人护理者福祉的远程干预措施的研究,总结研究结果并对研究质量进行评论。方法 在 2023 年 12 月之前进行系统检索。对研究特点、研究人群、干预措施和结果进行了概述,并对论文的方法学质量进行了评估。综述进行了预先登记(PROSPERO:CRD42020189235)。结果 确定了 11 项符合纳入标准的研究。研究方法的质量从一般较低到足够高。大多数研究评估了针对脑卒中患者照护者的干预措施,并试用了多种类型的干预措施。与对照组相比,大多数研究报告的幸福感结果并不显著。结论 支持远程干预以改善 ABI 照护者幸福感的证据有限。本文提出了一些具体建议,包括制定一套核心结果和长期复制研究结果,这些建议可以改进针对该人群的远程干预措施的开发和评估研究。
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引用次数: 0
Heads Together Online Peer Education (HOPE): co-design of a family-led, video-based resource for families affected by paediatric acquired brain injury. 齐心协力在线同伴教育(HOPE):为受小儿后天性脑损伤影响的家庭共同设计以家庭为主导的视频资源。
IF 0.8 4区 医学 Q3 Health Professions Pub Date : 2024-05-01 DOI: 10.1071/IB23101
Marnie Drake, Taylor Jenkin, Kate Heine, Penelope Analytis, Michael Kendall, Adam Scheinberg, Sarah Knight

Background Many families of children with acquired brain injuries (ABI) desire opportunities to connect with peers who have shared similar experiences, but such opportunities are often unavailable. Heads Together Online Peer Education (HOPE) is a co-designed online video-based resource that provides information and early support to families following paediatric ABI. This study is part of a larger co-creation project using a community-based participatory research approach to develop and implement HOPE for families impacted by paediatric ABI in Australia. This study aimed to explore parents' and clinicians' perspectives regarding HOPE's usability, acceptability, and future implementation. Methods Parents and clinicians were recruited from a state-wide, interdisciplinary rehabilitation service. Parents were eligible to participate if their child had sustained an ABI within 2 years of recruitment. Participants accessed HOPE, completed the System Usability Scale (SUS), and participated in a semi-structured interview. Transcripts were analysed using inductive content analysis. Results Ten parents and 13 rehabilitation clinicians participated. Average SUS scores were 80.5/100 and 81.73/100, respectively. Participants were satisfied with HOPE's family-centred content and delivery. They expressed having benefited from using HOPE and offered suggestions for its optimisation. Finally, participants reflected on how HOPE could be introduced to and used by families, and its potential usefulness in educating others about paediatric ABI. Conclusions HOPE was developed through a family-led co-design process and aims to provide information and support to families in the early stages following paediatric ABI. This study's findings demonstrate HOPE's usability and acceptability from end-users' perspectives and will guide implementation.

背景 许多后天性脑损伤(ABI)患儿的家庭都希望有机会与有类似经历的同伴建立联系,但这种机会往往可遇不可求。齐心协力在线同伴教育(HOPE)是一项共同设计的在线视频资源,为小儿后天性脑损伤家庭提供信息和早期支持。本研究是一个大型共同创造项目的一部分,该项目采用基于社区的参与式研究方法,为澳大利亚受儿科 ABI 影响的家庭开发和实施 HOPE。本研究旨在探讨家长和临床医生对 HOPE 的可用性、可接受性和未来实施的看法。方法 从全州范围内的跨学科康复服务机构招募家长和临床医生。如果家长的孩子在招募后两年内发生过 ABI,他们就有资格参与。参与者访问了 HOPE,填写了系统可用性量表 (SUS),并参加了半结构化访谈。访谈记录采用归纳内容分析法进行分析。结果 10 位家长和 13 位康复临床医生参与了此次调查。SUS 平均得分分别为 80.5/100 和 81.73/100。参与者对 HOPE 以家庭为中心的内容和授课方式表示满意。他们表示从使用 HOPE 中受益匪浅,并提出了优化建议。最后,参加者对如何向家庭介绍和使用 HOPE 以及 HOPE 在教育他人了解儿科 ABI 方面的潜在作用进行了思考。结论 HOPE 是通过家庭主导的共同设计过程开发的,旨在为小儿 ABI 后早期阶段的家庭提供信息和支持。本研究的结果从最终用户的角度证明了 HOPE 的可用性和可接受性,并将为其实施提供指导。
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Brain Impairment
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