Rujeedawa Tanzil, Karimi Zahabiya, Wood Helen, Sangeorzan Irina, Smith Roy, Sadler Iwan, Martin-Moore Esther, Gardner Adrian, K Demetriades Andreas, Sinha Rohitashwa, Grahovac Gordan, Bateman Antony, Deakin Naomi, Davies Benjamin
Division of Neurosurgery, Department of Clinical Neurosciences, University of Cambridge, The Old Schools, Trinity Ln, Cambridge, CB2 1TN, United Kingdom, 01223 337733.
Myelopathy.org, Cambridge, United Kingdom.
JMIR Form Res. 2025 Feb 24;9:e59032. doi: 10.2196/59032.
BACKGROUND: Degenerative cervical myelopathy (DCM), a form of slow-motion and progressive spinal cord injury caused by spinal cord compression secondary to degenerative pathology, leads to high levels of disability and dependence, and may reduce quality of life. Myelopathy.org is the first global scientific and clinical charity for DCM, providing an accessible platform freely disseminating information relevant to the DCM diagnosis and its treatment. Significant transient and long-term change to earnings do occur and can thrust individuals into poverty. People with DCM face many challenges accessing state financial assistance. This can have a cumulative negative financial effect due to the association between DCM and low socioeconomic index. Financial support available to patients under pension age include Universal Credit (UC), a payment that helps with living costs, and Personal Independence Payment (PIP), which helps with extra living costs if someone has both a long-term health condition or disability and difficulty doing certain everyday tasks. OBJECTIVE: This study aimed to assess if delivering workshops centered around access to financial support could assist people with DCM living in the United Kingdom. METHODS: A series of 2 internet-based workshops was targeted at accessing financial support for English patients under the state pension age, with an anonymized survey delivered to participants after each session. The first session was on UC and the second on PIP. The survey consisted of a mixture of Likert scales, free text and yes or no answers. Survey responses were analyzed using descriptive statistics and free text answers underwent inductive thematic analysis. RESULTS: The average rating on the use of UC was 9.00/10. Presession self-rated confidence levels were 5.11/10 rising to 8.00/10. The mean score of wanting further similar sessions was 8.67/10 with 56% (5/9) of participants wanting one-to-one sessions. For PIP, the average session use rating was 10/10. Presession self-rated confidence levels were 4.43/10 rising to 9.57/10. The mean score of wanting further similar sessions was 8.71/10, with 43% (3/7) of participants wanting one-to-one sessions . Following inductive thematic analysis, themes regarding the usefulness of such sessions and the challenges to accessing financial support emerged. One participant gave negative feedback, which included the length of the session and perceived problems around confidentiality and data protection. CONCLUSIONS: The pilot series was largely perceived as a success, with participants finding them useful and increasing their self-rated confidence in navigating the UK financial support system. Given the small sample size, it is hard to predict the success of future sessions. Finally, given that the hurdles in accessing financial support extend beyond DCM, such workshops may be relevant to other organizations.
背景:退行性颈椎病性脊髓病(DCM)是一种由退行性病变继发脊髓受压导致的缓慢进展性脊髓损伤形式,会导致高度残疾和依赖,并可能降低生活质量。Myelopathy.org是首个针对DCM的全球科学与临床慈善组织,提供了一个可免费获取信息的平台,用于传播与DCM诊断及其治疗相关的信息。收入确实会发生显著的短期和长期变化,这可能使个人陷入贫困。患有DCM的人在获得国家财政援助方面面临诸多挑战。由于DCM与低社会经济指数之间的关联,这可能会产生累积的负面经济影响。养老金领取年龄以下患者可获得的财政支持包括普遍信贷(UC),这是一种有助于支付生活费用的款项,以及个人独立支付(PIP),如果某人患有长期健康状况或残疾且在做某些日常任务时有困难,PIP可帮助支付额外的生活费用。 目的:本研究旨在评估举办围绕获取财政支持的研讨会是否能帮助生活在英国的DCM患者。 方法:针对养老金领取年龄以下的英国患者获取财政支持,举办了一系列两场基于网络的研讨会,每场研讨会结束后向参与者发放一份匿名调查问卷。第一场研讨会是关于UC,第二场是关于PIP。该调查问卷由李克特量表、自由文本以及是或否的答案混合组成。使用描述性统计方法分析调查问卷的回复,并对自由文本答案进行归纳主题分析。 结果:UC使用的平均评分是9.00/10。会前自我评定的信心水平为5.11/10,会后升至8.00/10。希望进一步举办类似研讨会的平均得分是8.67/10,56%(5/9)的参与者希望进行一对一的会议。对于PIP,研讨会使用的平均评分是10/10。会前自我评定的信心水平为4.43/10,会后升至9.57/10。希望进一步举办类似研讨会的平均得分是8.71/10,43%(3/7)的参与者希望进行一对一的会议。经过归纳主题分析,出现了关于此类研讨会的有用性以及获取财政支持面临的挑战等主题。一名参与者给出了负面反馈,包括研讨会的时长以及在保密性和数据保护方面存在的问题。 结论:该试点系列研讨会在很大程度上被认为是成功的,参与者认为它们很有用,并提高了他们在英国财政支持系统中导航的自我评定信心。鉴于样本量较小,很难预测未来研讨会的成功与否。最后,鉴于获取财政支持的障碍不仅仅局限于DCM,此类研讨会可能与其他组织相关。
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