Aphasia disrupts usual care: “I’m not mad, I’m not deaf” – the experiences of individuals with aphasia and family members in hospital

Carragher, Marcella; Steel, Gillian; O’Halloran, Robyn; Lamborn, Edwina; Torabi, Torab; Johnson, Hilary; Taylor, Nicholas F.; Rose, Miranda L.

doi:10.1080/09638288.2024.2324115

Cited by 3 publications

(1 citation statement)

References 55 publications

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“…Prior research exploring specific needs also confirms gaps exist in discrete areas of practice such as access to aphasia information, 12 management of mood disorders, 13 communication partner training, 14 treatment goals 22 and more recently, communicating with healthcare professionals in an acute setting. 23 However, further research aiming to build on these findings is required to determine the relative importance of needs and priorities for change, able to guide service development with PWA and SOs (across the care continuum, geographical remoteness and service contexts). Therefore, we explored the experiences and unmet needs of PWA and SOs to establish priorities for aphasia service improvement.…”

Section: Introductionmentioning

confidence: 99%

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Anemaat,

Palmer,

Copland

et al. 2024

BMJ Open

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Objective People with post-stroke aphasia (language/communication impairment) and their supporters report mixed satisfaction with stroke and aphasia care. To date, however, their journey of care and the key service interactions that shape their experience have not been comprehensively explored. We aimed to investigate the lived experience of post-stroke aphasia care, across the continuum of care and by geographical location, to establish priorities for service design. Design This is the first stage of an experience-based co-design study. We purposively sampled people with aphasia (PWA) and significant others (SOs) across 21 hospital and health service sites, community groups and by self-referral. Participants shared experiences of care in online interviews and focus groups. Touchpoints (key moments that shape experience) and unmet needs were identified using qualitative thematic analysis. Priorities for service design were established using an adapted nominal group technique. Setting Sites spanned remote, regional and metropolitan areas in Queensland, Australia. Participants PWA (n=32; mild=56%; moderate=31%; severe=13%) and SOs (n=30) shared 124 experiences of acute, rehabilitation and community-based care in 23 focus groups and 13 interviews. Results Both positive and negative healthcare experiences occurred most frequently in hospital settings. Negative experiences regularly related to communication with health professionals, while positive experiences related to the interpersonal qualities of healthcare providers (eg, providing hope) for PWA, or witnessing good rapport between a PWA and their health professional for SOs. To improve services, PWA prioritised communicatively accessible education and information and SOs prioritised access to psychological and peer support. Conclusions We identified key aspects of post-stroke aphasia care that shape experience. The needs of PWA and SOs may be better met through health professional training in supported communication, increased service availability in regional and remote areas, communication-accessible hospital environments, increased access to psychological and peer support, and meaningful involvement of SOs in rehabilitation.

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Section: Introductionmentioning

confidence: 99%

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Anemaat,

Palmer,

Copland

et al. 2024

BMJ Open

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Moving Toward Anti-Ableist Practices in Aphasia Rehabilitation and Research: A Viewpoint

Nunn,

Tilton-Bolowsky,

Kershenbaum

2024

Am J Speech Lang Pathol

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Purpose: Ableism is a pervasive set of beliefs that regard nondisabled bodies and minds as ideal and necessary to live a full life. Ableism manifests for people with aphasia as stigma and discrimination based on their language ability. We assert that ableism contributes to decreased quality of life for people with aphasia and should be actively challenged and disrupted by clinicians and researchers in the field. Method: We applied the Health Stigma and Discrimination Framework (HSDF) to outline how stigma and discrimination are perpetuated against people with aphasia on the basis of language ability and their downstream health and social consequences. We presented this framework at the Clinical Aphasiology Conference in 2023 and share themes and challenges that arose from this discussion and from our ongoing learning. Discussion: Applying the HSDF to aphasia outlined potential sequelae of ableism. We identified preliminary foci of future initiatives aimed at challenging ableist beliefs and practices and means to monitor the effectiveness of such interventions. Furthermore, we draw attention to the seeming tension between anti-ableist practices and traditional language rehabilitation goals. We assert that this tension may be a catalyst for fruitful discourse on how clinicians and researchers can resist ableism while honoring the lived experiences of people with aphasia and their goals for language rehabilitation. These discussions may be facilitated by existing models in disability studies (e.g., the political/relational model). Conclusions: Clinicians and researchers are well positioned to challenge ableism and minimize the resultant health and social impacts for people living with aphasia. Anti-ableist practices are not antithetical to aphasia rehabilitation and can be thoughtfully integrated into rehabilitation practices and discourse.

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The Adaptation of the Communicative Effectiveness Index (CETI) into Greek: A Reliability and Validity Study

Charalambous,

Phylactou,

Antoniou

et al. 2024

Brain Sciences

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The Communicative Effectiveness Index (CETI) is an informant rating scale designed to measure changes in functional communication in people with aphasia (PWA) from the carer’s perspective. It offers a comprehensive view of aphasia’s impact on everyday communication situations, aiding clinicians in designing personalized intervention plans. The aim of this study was to translate and adapt the CETI into Greek (CETI-GR) and validate its psychometric properties. The CETI-GR was translated into Greek using back-translation. A pilot and a content validity study ensured its acceptability. The study involved 30 people with aphasia and 30 carers. The CETI-GR’s psychometric properties were evaluated, including internal consistency, test–retest reliability, inter-rater reliability, and validity measures. The CETI-GR demonstrated excellent internal consistency (Cronbach’s α > 0.95) and excellent inter-rater reliability (ICC ≥ 0.93). Excellent consistency was revealed when testing the CETI responses given only by PWA (α = 0.91) versus their carers (α = 0.97). Test–retest reliability was high (ICC = 0.88). Significant correlations between the CETI-GR and measures of language severity, functional communication, and quality of life supported convergent validity. The CETI-GR is a reliable tool for assessing functional communication in chronic aphasia. Its Greek adaptation enhances aphasia rehabilitation, enabling person-centered care and improving the quality of life for people with aphasia and carers.

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Aphasia disrupts usual care: “I’m not mad, I’m not deaf” – the experiences of individuals with aphasia and family members in hospital

Cited by 3 publications

References 55 publications

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Understanding experiences, unmet needs and priorities related to post-stroke aphasia care: stage one of an experience-based co-design project

Moving Toward Anti-Ableist Practices in Aphasia Rehabilitation and Research: A Viewpoint

The Adaptation of the Communicative Effectiveness Index (CETI) into Greek: A Reliability and Validity Study

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