Inclusion in digital environments for people with aphasia

PhD ThesisBackground: Individuals with aphasia may wish to engage with the Internet for work, communication, or leisure. Pre-stroke Internet skills will vary, as will other factors such as availability of equipment and support. This thesis aims to investigate how aphasia influences Internet use and skills. Further, it aims to explore and evaluate assessment, intervention, and outcome measurement to support Internet use with aphasia. Method: A supported questionnaire was used to compare Internet and technology use between people with and without aphasia post-stroke (stage one). Forty-two participants were recruited, twenty-five of whom had aphasia. The two groups shared known risk factors for digital exclusion. A series of four experimental single case studies followed using a structured assessment and decision-making process with a focus on exploring interventions for participants with post-stroke aphasia who had particular goals around Internet use (stage two). Results: There was a very broad spectrum of levels of independent and supported Internet use amongst people with and without aphasia. Age was a stronger predictor than aphasia for Internet use/non-use. People with aphasia were less likely to use linguistic tools such as emailing, text messaging, and e-readers. Level of education influenced self-perception of Internet skills. Case-study interventions differed according to individual needs and goals. Clinical decision-making and interventions were guided by a specific focus on cognitive and Internet skills alongside environmental factors relevant to Internet use. Assessment demonstrated that, for three of four participants, change was evident, with gains linked to their Internet related goals. Discussion: This study adds to knowledge by enhancing understanding of how people with aphasia may face specific risks related to digital exclusion. It demonstrates that a holistic understanding of factors influencing Internet use and skills can support the design and evaluation of tailored interventions to enable iv Internet use with aphasia. This provides guidance for clinical practice and for future aphasia research.Stroke Associatio

CreaTable Content and Tangible Interaction in Aphasia

Multimedia digital content (combining pictures, text and music) is ubiquitous. The process of creating such content using existing tools typically requires complex, language-laden interactions which pose a challenge for users with aphasia (a language impairment following brain injury). Tangible interactions offer a potential means to address this challenge, however, there has been little work exploring their potential for this purpose. In this paper, we present CreaTable – a platform that enables us to explore tangible interaction as a means of supporting digital content creation for people with aphasia. We report details of the co-design of CreaTable and findings from a digital creativity workshop. Workshop findings indicated that CreaTable enabled people with aphasia to create something they would not otherwise have been able to. We report how users’ aphasia profiles affected their experience, describe tensions in collaborative content creation and provide insight into more accessible content creation using tangibles

The nature and content of rumination for head and neck cancer survivors

IntroductionHead and neck cancer (HNC) diagnosis and treatment can be a significant life trauma. Some HNC survivors experience post-traumatic growth (PTG), which has been linked with better health-related quality-of-life. Empirical research on PTG, and theoretical models, point to the importance of being able to purposely make sense of the traumatic experience. Intrusive rumination, by contrast, is linked to poorer outcomes. This study explored HNC survivors’ experiences of rumination.MethodsTwenty HNC survivors between 9 months and 5 years post-diagnosis were recruited (11 male, 9 female, age range 46–83). They had a range of HNC sub-types and cancer treatments. Participants underwent a semi-structured interview about their cancer diagnosis and treatment. Reflexive thematic analysis identified themes and sub-themes around rumination.ResultsFour themes with linked subthemes on the content and process of rumination were identified. Theme 1 was rumination and worry related to diagnosis. Here, survivors discussed how the HNC diagnosis and plans for treatment had dominated their initial thoughts. Theme 2 was processing the trauma of HNC. This theme reflected rumination on the traumatic experience of diagnosis and treatment and how the participant was reacting to it. Theme 3 was considering the impact. This theme encompassed retrospective thinking (e.g., on treatment decisions made) and comparisons between the participant now versus the early days after diagnosis. Theme 4 was continued rumination. This theme included ongoing intrusive and distressing rumination about the trauma and impact of cancer. Those who expressed ongoing rumination revisited fears (e.g., concerns about their future) or returned to negative experiences (e.g., distressing exchanges with healthcare professionals or what they perceived as poor care).ConclusionThis study uniquely describes the nature and content of rumination following HNC. Early intrusive rumination is common and may reflect perceptions of cancer as an existential threat. Over time, rumination can become more reflective and move towards deliberate meaning-making. Some HNC survivors may benefit from interventions to reduce barriers to this transition. The content of distressing and difficult to control rumination (commonly focused on ongoing fears or inability to resolve difficult experiences) helps to identify those who may benefit from more directed psychological support.</jats:sec

Health‑related quality of life in adults with low‑grade gliomas: a systematic review

Purpose Low-grade glioma (LGG) patients may face health-related quality-of-life (HRQoL) impairments, due to the tumour, treatment and associated side-effects and prospects of progression. We systematically identified quantitative studies assessing HRQoL in adult LGG patients, for: aspects of HRQoL impacted; comparisons with non-cancer controls (NCC) and other groups; temporal trends; and factors associated with HRQoL. Methods MEDLINE, CINAHL, Embase, PubMed, and PsycINFO were systematically searched from inception to 14th September 2021. Following independent screening of titles and abstracts and full-texts, population and study characteristics, and HRQoL findings were abstracted from eligible papers, and quality appraised. Narrative synthesis was conducted. Results Twenty-nine papers reporting 22 studies (cross-sectional, n = 13; longitudinal, n = 9) were identified. Papers were largely good quality, though many excluded patients with cognitive and communication impairments. Comparators included high-grade gliomas (HGG) (n = 7); NCCs (n = 6) and other patient groups (n = 3). Nineteen factors, primarily treatment (n = 8), were examined for association with HRQoL. There was substantial heterogeneity in HRQoL instruments used, factors and aspects of HRQoL assessed and measurement timepoints. HRQoL, primarily cognitive functioning and fatigue, in adult LGG patients is poor, and worse than in NCCs, though better than in HGG patients. Over time, HRQoL remained low, but stable. Epilepsy/seizure burden was most consistently associated with worse HRQoL. Conclusion LGG patients experience wide-ranging HRQoL impairments. HRQoL in those with cognitive and communication impairments requires further investigation. These findings may help clinicians recognise current supportive care needs and inform types and timings of support needed, as well as inform future interventions

The impact of aphasia on Internet and technology use

Fiona Menger - ORCID: 0000-0002-9610-540X http://orcid.org/0000-0002-9610-540XItem not available in this repositoryItem deposited in University of Newcastle repository, available at: https://eprint.ncl.ac.uk/251172Purpose: This study compared Internet use post-stroke in people with aphasia (n = 25) and without aphasia (n = 17). The purpose was to understand how people with aphasia were using the Internet and to investigate the impact of aphasia on their use. Materials and methods: A face-to-face supported questionnaire explored the use of technologies, types of Internet use, traditional and Internet communication, the perception of abilities, and possible barriers to acquiring or improving Internet skills. Descriptive and inferential statistics were used to analyze the data. Results: Internet use ranged from fully independent to by proxy across both groups. Most participants perceived their aphasia as a barrier, but for the majority, it was not the sole reason for failing to acquire or improve skills. Aphasia was related to difficulties with technology-based written communication. Educational attainment was related to participant’s feelings about their own skills. Whilst aphasia was important, analysis revealed that age was a stronger predictor of Internet use per se. Conclusions: It is clear that aphasia often negatively affects Internet use and proficiency. However, this research clearly demonstrates that it is important to consider the influence of factors such as age, proxy use, education, and previous technology use and experience. Implications for rehabilitation Post-stroke aphasia contributes negatively to Internet use, particularly in the use of online communication tools such as email and messaging services. Sub-groups of people with aphasia are likely to be more vulnerable to exclusion from the benefits of the Internet; specifically, older people and those with lower levels of educational attainment. It is common for both older adults with and without aphasia to use the Internet via a proxy. Independent use may not always be the desired goal within rehabilitation. People with aphasia may perceive their age and disability as barriers to using the Internet and may lack confidence in their own ability or potential.42pubpub2

The impact of aphasia on Internet and technology use

From Crossref via Jisc Publications RouterHistory: epub 2019-04-13, issued 2019-04-1