63 research outputs found

    Quality of life of the caregivers of people with aphasia. A systematic review.

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    Purpose: Systematic review to identify the factors associated to the quality of life (QOL) of the caregivers of people with aphasia (PWA). Methods: Studies were searched using Medline, Pubmed, Cochrane Library, CINAHL, PsycINFO and Web of Science databases. Peer-reviewed papers that studied the QOL of PWA’s caregivers or the consequences of aphasia in caregivers’ life were included. Findings were extracted from the studies that met the inclusion criteria. Results: No data is available reporting particularly the QOL of PWA caregivers’ or their QOL predictors. Nevertheless, it was possible to extract aspects related to QOL from the studies that report the consequences of aphasia, and life changes in PWA’s caregivers. Nine (9) studies including PWA’s caregivers were found, but only 5 reported data separately on them. Methodological heterogeneity impedes cross-study comparisons, although some considerations can be made. PWA’s caregivers reported life changes such as: loss of freedom; social isolation; new responsibilities; anxiety; emotional loneliness; need for support and respite. Conclusions: Changes in social relationships, in emotional status, increased burden and need for support and respite were experienced by PWA’s caregivers. Stroke QOL studies need to include PWA caregivers’ and report separately on them. Further research is needed in this area in order to determine their QOL predictors and identify what interventions and referrals better suit their needs

    Managing ongoing swallow safety through information‐sharing: An ethnography of speech and language therapists and nurses at work on stroke units

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    © 2022 The Authors. International Journal of Language & Communication Disorders published by John Wiley & Sons Ltd on behalf of Royal College of Speech and Language Therapists. This is an open access article under the terms of the Creative Commons Attribution License, https://creativecommons.org/licenses/by/4.0/Background: Speech and language therapists and nurses need to work together to keep patients with swallowing difficulties safe throughout their acute stroke admission. Speech and language therapists make recommendations for safe swallowing following assessment and nurses put recommendations into practice and monitor how patients cope. There has been little research into the everyday realities of ongoing swallow safety management by these two disciplines. Patient safety research in other fields of healthcare indicates that safety can be enhanced through understanding the cultural context in which risk decisions are made. Aims: To generate new understanding for how speech and language therapists (SLTs) and nurses share information for ongoing management of swallows safety on stroke units. Methods & Procedures: An ethnographic methodology involving 40 weeks of fieldwork on three stroke wards in England between 2015 and 2017. Fieldwork observation (357 h) and interviews with 43 members of SLT and nursing staff. Observational and interview data were analysed iteratively using techniques from the constant comparative method to create a thematically organized explanation. Outcomes & Results: An explanation for how disciplinary differences in time and space influenced how SLT and nursing staff shared information for ongoing management of swallow safety, based around three themes: (1) SLTs and nurses were aligned in concern for swallow safety across all information‐sharing routes; however, (2) ambiguity was introduced by the need for the information contained in swallowing recommendations to travel across time, creating dilemmas for nurses. Patients could improve or deteriorate after recommendations were made and nurses had competing demands on their time. Ambiguity had consequences for (3) critical incident reporting and relationships. SLTs experienced dilemmas over how to act when recommendations were not followed. Conclusions & Implications: This study provides new understanding for patient safety dilemmas associated with the enactment and oversight of swallowing recommendations in context, on stroke wards. Findings can support SLTs and nurses to explore together how information for ongoing dysphagia management can be safely implemented within ward realities and kept up to date. This could include considering nursing capacity to act when SLTs are not there, mealtime staffing and SLT 7‐day working. Together they can review their understanding of risk and preferred local and formal routes for learning from it. What this paper adds: What is already known on the subject: It is known that information to keep swallowing safe is shared through swallowing recommendations, which are understood to involve a balance of risks between optimizing the safety of the swallow mechanism and maintaining physiological and emotional health. There is increasing appreciation from patient safety research, of the importance of understanding the context in which hospital staff make decisions about risk and patient safety. What this paper adds to existing knowledge: The paper provides new empirical understanding for the complexities of risk management associated with SLT and nursing interactions and roles with respect to ongoing swallow safety. What are the potential or actual clinical implications of this work?: Findings can underpin SLT and nurse discussion about how swallow safety could be improved in their own settings.Peer reviewedFinal Published versio

    Perspectives on quality of life by people with aphasia and their family: Suggestions for successful living

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    Understanding the client's perspective is essential for good practitioner care in rehabilitation after stroke, and nothing is more relevant than enquiring directly about our clients' quality of life to inform our management. Relatively little is known about how older people with aphasia consider the quality of their current lives, and this article seeks to explore this issue. Four women's accounts of their life quality are presented, as well as their husbands' or daughter's accounts of their lives. Their stories share some common elements. Who you love or share your life with; where you live; feeling independent and/or in control; and engaging in satisfying activities mattered to these women's life quality. The impact of aphasia varies across the cases, and the need to accept change for successful living is illustrated in all accounts

    To what extent can we rely on the views of family members and friends when it comes to understanding aphasic people’s quality of life?

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    This study addresses the important question of to what extent can we rely on the views of proxy respondents when it comes to understanding aphasic people’s quality of life. Thirty proxies answered six open-ended questions on their partners’ behalf in semi-structured interviews. Case by case matches of proxies’ with their aphasic partners’ responses are reported. Proxies were limited in their capacity as informants, able to describe the impact of people, activities, and verbal communication only. Whilst these were the key concepts for aphasic participants, only one third of proxies generally identified them, and the breadth of participants’ views remained uncaptured by proxies (e.g. mobility, one’s home, support from others, positive outlook, in/dependence, health, impairments, and recognising strengths in communication). (119 words
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