1.
Ali, M, et al.
(author)
Protocol for the development of the international population registry for aphasia after stroke (I-PRAISE)
2022
In: Aphasiology. - : Informa UK Limited. - 0268-7038 .- 1464-5041. ; 36:4, s. 534-554
Journal article (peer-reviewed) abstract
Background: We require high-quality information on the current burden, the types of therapy and resources available, methods of delivery, care pathways and long-term outcomes for people with aphasia.Aim: To document and inform international delivery of post-stroke aphasia treatment, to optimise recovery and reintegration of people with aphasia.Methods & Procedures: Multi-centre, prospective, non-randomised, open study, employing blinded outcome assessment, where appropriate, including people with post-stroke aphasia, able to attend for 30 minutes during the initial language assessment, at first contact with a speech and language therapist for assessment of aphasia at participating sites. There is no study-mandated intervention. Assessments will occur at baseline (first contact with a speech and language therapist for aphasia assessment), discharge from Speech and Language Therapy (SLT), 6 and 12-months post-stroke. Our primary outcome is changed from baseline in the Amsterdam Nijmegen Everyday Language Test (ANELT/Scenario Test for participants with severe verbal impairments) at 12-months post-stroke. Secondary outcomes at 6 and 12 months include the Therapy Outcome Measure (TOMS), Subjective Index of Physical and Social Outcome (SIPSO), Aphasia Severity Rating Scale (ASRS), Western Aphasia Battery Aphasia Quotient (WAB-AQ), stroke and aphasia quality of life scale (SAQoL-39), European Quality of Life Scale (EQ-5D), lesion description, General Health Questionnaire (GHQ-12), resource use, and satisfaction with therapy provision and success. We will collect demography, clinical data, and therapy content. Routine neuroimaging and medication administration records will be accessed where possible; imaging will be pseudonymised and transferred to a central reading centre. Data will be collected in a central registry. We will describe demography, stroke and aphasia profiles and therapies available. International individual participant data (IPD) meta-analyses will examine treatment responder rates based on minimal detectable change & clinically important changes from baseline for primary and secondary outcomes at 6 and 12 months. Multivariable meta-analyses will examine associations between demography, therapy, medication use and outcomes, considering service characteristics. Where feasible, costs associated with treatment will be reported. Where available, we will detail brain lesion size and site, and examine correlations with SLT and language outcome at 12 months.Conclusion: International differences in care, resource utilisation and outcomes will highlight avenues for further aphasia research, promote knowledge sharing and optimise aphasia rehabilitation delivery. IPD meta-analyses will enhance and expand understanding, identifying cost-effective and promising approaches to optimise rehabilitation to benefit people with aphasia.
2.
3.
Blom Johansson, Monica, 1965-
(author)
Experiences and need of support to significant others of persons with aphasia
2023
Conference paper (peer-reviewed) abstract
Background and aims: Significant others (SOs) of people with aphasia (PWA) can affect the individual’s social participation, conversational ability, and rehabilitation outcome [1]. SOs have been called the most valuable but also the most vulnerable resource of a patient [2]. To be a supportive SO and to remain healthy in a challenging situation SOs may need support themselves. The aim of this study was to investigate what support SOs of PWA have received, how they experienced the support, and their need for further support. Methods: 173 SOs responded to a study-specific questionnaire (response rate: 67.8%). Quantitative data were analysed with descriptive and comparative statistics and answers to open-ended questions were analysed with qualitative content analysis. Results and main contribution: The SOs appreciated knowledge, devotion, helpfulness, and empathy of health care staff and community services. Community services were perceived as being characterised by long processing times, lack of continuity of staff and insufficient understanding of the needs of the PWA and the SO. Most respondents were satisfied with the informal support provided by disability organizations, family, and relatives. There was however still a pronounced need of a more understanding environment (family, friends, health-care services). The strongest need expressed by the SOs was having time of their own. Despite an acknowledged burdensome situation and low emotional well-being among SOs of PWA [3], the need for counselling was the least perceived need (expressed by 16%).Conclusions: Feeling seen and acknowledged as well as having time of their own are important but perhaps underestimated needs of SOs of PWA. Implications: This study highlights the importance to include the SOs in the rehabilitation of PWA but also to provide separate support to them.
4.
Blom Johansson, Monica, 1965-, et al.
(author)
Self-reported changes in everyday life and health of significant others of people with aphasia : a quantitative approach
2022
In: Aphasiology. - : Taylor & Francis. - 0268-7038 .- 1464-5041. ; 36:1, s. 76-94
Journal article (peer-reviewed) abstract
Background: Changes in the everyday life and health of the significant others (SOs) of people living with stroke sequalae have been widely investigated. However, information regarding the frequency of the changes in daily life and the variables most associated with these perceived life changes is limited. Aims: To examine the extent to which SOs of persons with aphasia (PWAs) experience changes in everyday life and health after the stroke event and how they evaluate these changes and to identify which variables are associated with these perceived life changes. Methods & Procedures: A study-specific questionnaire about perceived changes in everyday life and health was completed by 173 SOs of PWAs living in Sweden (response rate 67.8%). The items concerned the SO’s working and financial situation, leisure time and social life, relationship with the PWA, household work and responsibility, and health and quality of life. Outcomes & Results: The everyday life and health of the SOs were greatly affected by the stroke event. The changes the SOs experienced were mainly appraised negatively. The relationships with the PWA and immediate family were least affected by the stroke. The perceived existence and severity of physical, cognitive, and language impairments of the PWA were the variables most strongly associated with the everyday life situation of the participants. The sex and age of the participants and the nature of the relationship with the PWA were only marginally associated with the experience of the situation. Conclusions: SOs’ perceptions of the PWA’s stroke-related disabilities and need for assistance may be a key factor in identifying SOs who may require support and guidance to help them cope with their new life situation.
5.
Cruice, Madeline, et al.
(author)
Reporting Interventions in Communication Partner Training : A Critical Review and Narrative Synthesis of the Literature
2018
In: Aphasiology. - : Informa UK Limited. - 0268-7038 .- 1464-5041. ; 32:10, s. 1135-1166
Journal article (peer-reviewed) abstract
Background: Communication partner training (CPT) is an umbrella term for a complex behavioural intervention for communications partners (CPs) of people with aphasia (PWA) and possibly PWA themselves, with many interacting components, deployed in flexible ways. Recent systematic reviews (Simmons-Mackie, Raymer, Armstrong, Holland, & Cherney, 2010; Simmons-Mackie, Raymer, & Cherney, 2016) have highlighted the effectiveness of CPT in addressing the skills of conversation partners and the communicative participation of people with aphasia but have suggested that CPT has been variably delivered, with no clear picture of what the essential elements of CPT are and how CPT is expected to achieve its results through hypothesised mechanisms of change (Coster, 2013).Aim: This paper aims broadly to consider specification of CPT and describes how CPT has been conducted overall and in relation to treatment recipients. Recommendations for CPT and areas for future research are considered.Methods & Procedures: A critical review and narrative synthesis was carried out through: (i) the systematic application of the 12-item TIDieR checklist (Hoffmann et al., 2014) to the 56 studies appraised in the Simmons-Mackie et al. (2010, 2016)) reviews, providing a quantitative overview of the completeness of CPT intervention reporting; and (ii) a qualitative synthesis of the reviewed CPT literature according to TIDieR items.Outcomes & Results: Half of the TIDieR checklist items were reported by 71% or more of the studies, and the rest of the items were reported by 0–63% of studies. TIDieR items relating to the treatment (goal, rationale or theory of essential elements, materials and procedures) and provision (provider, mode, timing, dose) were more frequently reported; however, the level of detail provided was often inadequate or incomplete. The interventions were insufficiently specified to enable replication for most of the studies considered. The most infrequently reported items were: name, location, intervention tailoring and modification, and planned and actual intervention adherence/fidelity.Conclusion: For a better understanding of an intervention, it is necessary to identify and describe potentially central elements and perhaps especially in complex interventions as CPT, where it is likely also more difficult. Whilst the reviewed CPT studies are on average reporting on slightly more than half of the TIDieR items, they are overall insufficiently detailed. Some items appear easier to report on, whereas other items have not been attended to, are too complex in nature to give a full report on, or simply have not been relevant for the individual study to include.
6.
7.
8.
Lohmander, Anette, et al.
(author)
Kommunikations- och sväljstörningar genom hela livet : ett logopediskt ståndpunktsdokument
2017
Reports (other academic/artistic) abstract
Den forskning som bedrivs inom logopedi i Sverige idag spänner över ett brett spektrum av medfödda, utvecklingsrelaterade och förvärvade kommunikationsstörningar på grund av röst-, tal- och språksvårigheter samt sväljstörningar. Precis som i andra länder pågår en snabb utveckling både mot en breddning av det urval av områden som det forskas kring och ett ökat fokus på nationellt samarbete. Även om de framsteg som görs inom respektive fält kan mätas genom de forskningsrapporter som publiceras av respektive forskargrupper, finns det ett behov av att granska vilka forskningsinsatser som bedrivs jämte det demografiska sammanhanget. I detta ståndpunktsdokument ger vi en översikt över logopediämnet och den forskning som bedrivs i Sverige. I en kubmodell illustreras hur kommunikations- och sväljstörningar kan beskrivas. Stratifierade (per åldersintervall) uppskattningar av prevalensen av kommunikations- och sväljstörningar ges baserat på 2016 års befolkningsstruktur. Genom att presentera dessa två komponenter identifieras forskningsområden och riktningar inom logopedi som behöver ges ökad uppmärksamhet i det kommande forskningsarbetet.
9.
Olsson, Camilla, 1971-, et al.
(author)
Relations between executive function, language, and functional communication in severe aphasia
2019
In: Aphasiology. - : Informa UK Limited. - 0268-7038 .- 1464-5041. ; 33:7, s. 821-845
Journal article (peer-reviewed) abstract
Background: Intervention in severe aphasia often means aiming for access to meaningful social interaction in spite of linguistic barriers that might not be treatable. This demands knowledge about the different factors that influence functional communication. Apart from linguistic ability, executive functions are thought to play an important role.Aims: To expand the understanding of the relations of executive functions and linguistic ability to functional communication in severe aphasia.Methods and Procedures: Executive functions, linguistic ability, and functional communication were assessed in 47 participants with severe aphasia. The results were analysed for the total sample and for a verbal and a nonverbal subgroup.Outcomes and Results: Impairment of executive function was found in 79% of the participants. There were moderate to strong correlations between all subtests of executive functions and linguistic ability. In the total sample, significant partial correlation was found between functional communication and verbal output. In the nonverbal subgroup, there was a significant partial correlation between executive function and functional communication, when controlling for linguistic ability. In the verbal subgroup, no relations were found between executive functions or language and functional communication.Conclusions: Impairments of executive functions are common in people with severe aphasia, and executive function and linguistic ability are closely related. The ability to produce verbal output is strongly related to functional communication, but in people with extreme limitation or total absence of verbal output, executive functions seem to be an important factor for functional communication. There is a large variation of executive functions and functional communication in people with severe aphasia, especially in the nonverbal subgroup. It is important that people with severe aphasia are given a complete and proper evaluation of their abilities, and that the possible importance of executive function to communication is considered in communication intervention.
10.
Olsson, Camilla, 1971-, et al.
(author)
What do people respond to when rating executive function? : a cognitive interviewing investigation of BRIEF-A informant ratings in severe aphasia
2022
In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 44:12, s. 2930-2940
Journal article (peer-reviewed) abstract
Purpose: Executive dysfunction is common in persons with severe aphasia. Assessing these functions in this population is challenging. Informant ratings, such as the BRIEF-A, might be a useful alternative to neuropsychological tests. However, research has shown weak relationships between tests and ratings. The aim of this study was to understand how significant others of people with severe aphasia interpret and respond to questions about executive function in the informant report version of BRIEF-A.Methods: Eleven significant others were interviewed about a subset of the BRIEF-A items, using cognitive interviewing. Interviews were subjected to thematic analysis.Results: There was variation in the interpretation of the items of BRIEF-A which frequently corrupted theitems’ relation to what it was intended to measure. Further, informants wavered between considering the person with aphasias’ ability or actual performance and many had lowered their expectations. The language problems caused by the aphasia affected the validity of some items.Conclusions: The quantitative results of BRIEF-A informant ratings should be interpreted with caution, since it is unclear to what extent the responses represent executive function. The use of informant ratings does not solve the problem with aphasia being a confounding factor in assessment of executive function.IMPLICATIONS FOR REHABILITATIONAssessing executive function in people with severe aphasia is important but challenging.Quantitative results of informant ratings of executive function, such as BRIEF-A, in this population should be interpreted with caution, since it is unclear to what extent the ratings represent executive function.Using informant ratings does not solve the problem of the aphasia being a confounding factor, since the aphasia impacts on the validity of some of the items.
