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Ruby Wallis

Bio: Ruby Wallis is an academic researcher. The author has contributed to research in topics: Cerebellar ataxia & Ataxia. The author has co-authored 1 publications.

Papers
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DOI
16 Nov 2021
TL;DR: A survey by Ataxia UK for their members as discussed by the authors showed that the impact of these symptoms can vary across ataxia populations, and that carers, friends, and families experienced similar challenges to people with ataxias, indicating that support provided has to consider those supporting people with ATAs as well as the patient.
Abstract: Background: Progressive ataxias are complex disorders that result in a wide variety of symptoms. Whilst we currently have a relatively good understanding of the symptom patterns associated with the various types of ataxia, and how these diseases progress over time, their impact on the person with ataxia is less well understood. In addition, little is known about how carers, friends and families are affected by them. This paper aims to provide preliminary information on the presence and impact of medical symptoms and day-to-day challenges on people with ataxia and their friends and relatives. Method: Data were extracted from a survey by Ataxia UK for their members. The views of 366 people with ataxia and 52 friends and relatives are reported. Data were analysed for the entire groups, as well as for the three most common ataxia types represented in the sample, Friedreich's ataxia, inherited ataxia (excluding Friedreich's ataxia), and cerebellar ataxia of unknown cause. Results: The survey confirmed the symptom patterns described in previous research, but further showed that the impact of these symptoms can vary across ataxia populations. Similar findings were observed for day-to-day challenges. Friends and relatives experienced similar challenges to people with ataxia, indicating that support provided has to consider those supporting people with ataxia as well as the patient. Respondents also highlighted limitations in terms of accessing support services, and not all services were able to cater fully to their specific needs. Conclusion: This study begins to provide information that can be used in further research to explore the needs of people with ataxia and their carers, friends, and relatives. Such research will support treatment trial design, ensuring patients' needs are considered, help to tailor support services to their needs, and ensure health care professionals have the necessary skills to fully address them.

2 citations


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Posted ContentDOI
22 Apr 2022
TL;DR: ClearSpeechTogether as mentioned in this paper is a peer-led group intervention for people with progressive ataxia and mild-moderate speech and gross motor impairment, which consists of four individual sessions over two weeks followed by 20 patient-driven group sessions over four weeks.
Abstract: Abstract Background Progressive ataxias frequently lead to speech disorders and consequently impact on communication participation and psychosocial wellbeing. Whilst recent studies demonstrate the potential for improvements in these areas, these treatments generally require intensive input which can reduce acceptability of the approach. A new model of care – ClearSpeechTogether – is proposed which maximises treatment intensity whilst minimising demands on clinician. This study aimed to establish feasibility and accessibility of this approach and at the same time determine the potential benefits and adverse effects on people with progressive ataxias. Method The study targeted people with progressive ataxia and mild-moderate speech and gross motor impairment. ClearSpeechTogether consisted of four individual sessions over two weeks followed by 20 patient-led group sessions over four weeks. All sessions were provided online. Quantitative and qualitative data were collected for evaluation. Results Nine participants completed treatment. Feasibility and acceptability were high and no adverse effects were reported. Statistical tests found significantly reduced vocal strain, improved intelligibility for reading, and increased participation and confidence. Participant interviews highlighted the value of group support, from psychosocial perspectives and in supporting speech strategy internalisation and generalisation. Discussion ClearSpeechTogether presented an effective intervention in a small group of people with progressive ataxia. It matched or exceeded the outcomes previously reported for intensive, individual therapy while minimising clinician time demands. Furthermore, its unique peer led group intervention design appeared effective in addressing intractable psychosocial issues. ClearSpeechTogether is potentially cost-effective, providing intensive delivery with few clinician sessions, thus maximising the input available from health care providers.
Journal ArticleDOI
TL;DR: ClearSpeechTogether as mentioned in this paper is a patient-led approach to manage speech problems in ataxia, which can be found to reduce vocal strain, improve reading intelligibility and increase participation and confidence.
Abstract: Progressive ataxias frequently lead to speech disorders and consequently impact on communication participation and psychosocial wellbeing. Whilst recent studies demonstrate the potential for improvements in these areas, these treatments generally require intensive input which can reduce acceptability of the approach. A new model of care-ClearSpeechTogether-is proposed which maximises treatment intensity whilst minimising demands on clinician. This study aimed to establish feasibility and accessibility of this approach and at the same time determine the potential benefits and adverse effects on people with progressive ataxias.This feasibility study targeted people with progressive ataxia and mild-moderate speech and gross motor impairment. ClearSpeechTogether consisted of four individual sessions over 2 weeks followed by 20 patient-led group sessions over 4 weeks. All sessions were provided online. Quantitative and qualitative data were collected for evaluation.Nine participants completed treatment. Feasibility and acceptability were high and no adverse effects were reported. Statistical tests found significantly reduced vocal strain, improved reading intelligibility and increased participation and confidence. Participant interviews highlighted the value of group support internalisation of speech strategies and psycho-social wellbeing.ClearSpeechTogether presented a feasible, acceptable intervention for a small cohort of people with progressive ataxia. It matched or exceeded the outcomes previously reported following individual therapy. Particularly notable was the fact that this could be achieved through patient led practice without the presence of a clinician. Pending confirmation of our results by larger, controlled trials, ClearSpeechTogether could represent an effective approach to manage speech problems in ataxia.