Perceived Benefits for Family Members of Group Participation by Their Relatives with Aphasia

Rotherham, Annette; Howe, Tami; Tillard, Gina

doi:10.21849/cacd.2016.00059

Cited by 6 publications

(5 citation statements)

References 26 publications

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“…This subtheme suggests that the GC can be a useful way for family members of PWA to achieve their own goals of support [11]. The communication benefits of GC attendance have been documented previously [21,22], as have the psychosocial benefits of aphasia group participation [18]. The sense of community depicted in the current study further reinforces this relationship between psychosocial wellbeing and communication support.…”

Section: Discussionsupporting

confidence: 71%

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“It’s improved the whole lifestyle”: Exploring the family perspective of participation in a Gavel Club for people with aphasia

Lyon¹,

McCann²,

Purdy³

et al. 2022

Clin Arch Commun Disord

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Purpose: Aphasia impacts not just the individual with aphasia, but also their family members and friends. Known as third-party disability, it is largely hidden but can be as pervasive as aphasia itself. Gavel Clubs are a Toastmasters International-affiliated group where members participate in public-speaking tasks. Participation has been associated with improvements in quality-of-life and communication confidence but the extent to which it can impact family members of people with aphasia is not yet known. This study explored family member perspectives of participation in a Gavel Club for people with aphasia, to reveal any benefits or challenges perceived by family members and/or close friends.Methods: Semi-structured interviews were undertaken with 13 family members or close friends of people with aphasia who regularly participated in a weekly Gavel Club. The interviews were analysed using thematic analysis.Results: Three themes were identified: (1) Something to do, (2) Sense of community and (3) I can see great improvements, along with two subthemes (i) This is not just us and (ii) Support of knowing other people go through it. The themes reflected a largely positive experience of Gavel Club participation as perceived by family members. The theme names were derived from quotes from the participants.Conclusions: Regular participation in a Gavel Club for people with aphasia has a positive impact beyond just the person with aphasia, extending to their family members and close friends. This impact can be direct, if the family members themselves participate, or indirect, through the perceived benefits for the person with aphasia.

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Section: Discussionsupporting

confidence: 71%

“…Community groups for PWA have also been found to have an impact on the family members of participants too. Rotherham, Howe & Tillard [18] conducted interviews with ten PWA who had participated in community groups and six of their family members. Ten benefits of community groups were identified by the family member participants.…”

Section: Community Groupsmentioning

confidence: 99%

“It’s improved the whole lifestyle”: Exploring the family perspective of participation in a Gavel Club for people with aphasia

Lyon¹,

McCann²,

Purdy³

et al. 2022

Clin Arch Commun Disord

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“…The aphasia centre not only provides them with time for themselves when their partner goes to the centre, but it also provides support and peer groups for their beloved one. Attention and support for relatives of people with aphasia is important, as described in former research (Rotherham, Howe, & Tillard, 2016;Van der Gaag et al, 2005;Visser-Meily, Post, Van Heugten, & Van den Bos, 2008). This becomes even more relevant in our current Dutch society, where more responsibility shifts to the informal care network to deal with rising costs of a population growing older.…”

Section: Discussionmentioning

confidence: 99%

The meaning of aphasia centres from the perspectives of people with aphasia and their relatives: understanding participation in the Dutch context

et al. 2018

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Background: Aphasia can have major consequences for participation. In line with other initiatives around the world, in the Netherlands aphasia centres provide support to people with aphasia and their relatives in the chronic phase to bridge the gap between therapy, rehabilitation, and participation in daily life. Although there is greater focus on participation in health care, the concept of participation is complex and not well-defined. Aims: The purpose of this paper is to understand the value and meaning of the aphasia centres in the Dutch context. We focus on the emic perspectives of people with aphasia and their relatives: how do aphasia centres contribute to building up a meaningful life with aphasia in the chronic phase and how do the centres support them to participate? Hence, this study also contributes to the understanding of the concept of participation and its meaning. Methods and procedures: This qualitative study used a naturalistic case study design in order to get an rich and multi-layered understanding of the context of aphasia centres. Within this context we focused on the experiences and perspectives of people with aphasia and their relatives. To secure involvement of people with aphasia themselves, research methods were attuned to their abilities to participate, and included participant observations, interviews, focus group meetings, and creative methods. Outcomes and results: Aphasia centres help people with aphasia to overcome isolation. They bring new goals and perspectives and help people find new meaning in life. They are experienced as a safe place to learn, overcome shame, and build self-confidence. Working in groups is a valuable element, providing a mutual sense of belonging. Also, people experience they can have a meaningful contribution by helping others. Relatives underscore these values and also feel supported in building up their life with their partner. Conclusions: Aphasia centres are a first step to overcome isolation and bear a first step towards participation in itself. They contribute to overcome barriers to relate to others by building self-confidence and overcome shame. This is a big step stone towards participation in the context outside the centre. From the perspectives of clients and relatives, participation is linked to the concept of being and belonging. At the same time, clients feel it is hard to meet societal norms of participation, framed as paid work, ARTICLE HISTORY

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“…Most PWA strengthen ties with immediate family members after stroke, bringing them into focus and making them key contacts (Hilari and Northcott, 2006;Ellis et al, 2019). Interaction with other PWA can improve communication within the family, reduce PWA dependence on family members, and allow family members to have time to themselves (Rotherham et al, 2016).…”

Section: Discussionmentioning

confidence: 99%

Peer-to-peer support: digital networking in aphasia to improve quality of life (PeerPAL)

Kurfess,

Corsten,

Nickel

et al. 2023

Front. Commun.

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BackgroundPeople with aphasia (PWA) often suffer from reduced participation and quality of life. Nevertheless, there are currently only a few specific interventions that respond to this problem. Participation and quality of life could be increased by interacting with peers who have similar experiences. Digital social networks could stimulate an autonomous interaction. However, digital social networks need to be adapted to the specific needs of PWA. Therefore, a participatory, agile process involving the target group should be chosen to develop such a solution, i.e., an app. The research project consists of a total of three phases. In the first phase—app development—the app was developed and programmed including the target group. In the second phase—app testing—the usability and user-friendliness of the app were evaluated with four PWA. In the third phase—feasibility and preliminary efficacy—that will be described in the article, the impact of the app on PWA will be evaluated.AimsThe overarching aim of our study is to provide preliminary efficacy of the intervention. Digital social interaction with other PWA can lead to increased social integration. In addition to digital interaction, personal encounters between PWA should be encouraged. As a result, we expect an improvement in quality of life of PWA. Additionally, we focus on identification of the most appropriate measurements to discover changes associated with the intervention.MethodsThe evaluation, which is described in this paper, takes place in a pre-test - post-test design with a total of n = 48 PWA. Participants will be recruited in regional clusters to facilitate face-to-face meetings. Half of the participants will be assigned to the delayed intervention group and the other half to the immediate intervention group. Participants in the delayed intervention group will go through a 3-month waiting period before using the app, while the participants of the immediate intervention group will start using the app for 3 months right away. Inclusion criteria are the presence of chronic aphasia (at least 6 months) and possession of a smartphone with internet access. Questionnaires on quality of life (SAQOL-39, GHQ-12), depression (GDS, DISCs), communicative participation (CPIB), and social support (F-SozU) will be conducted at inclusion (t0), after 3 months of app use (t1), and after another 3 months for follow-up (t2). Participants in the delayed intervention group will be assessed twice before the intervention, before the 3-month waiting period (t0a) and after the waiting period (t0b). In addition to the quantitative measures, interviews will take place with 6 to 8 selected participants after 3 months of app use. Responses will be analysed using Thematic Analysis.DiscussionThe app will be the first social network tool that is systematically developed with PWA. Initial indications from the first phases are that the app can be used by PWA, so that the evaluation of this app version can take place in the third phase. Results of this study can provide an initial indication of whether social network support is a suitable intervention. Findings will help provide information on the feasibility of digital connectivity for PWA. Preliminary findings on its impact on the participation and quality of life of PWA could be made available.

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Perceived Benefits for Family Members of Group Participation by Their Relatives with Aphasia

Cited by 6 publications

References 26 publications

“It’s improved the whole lifestyle”: Exploring the family perspective of participation in a Gavel Club for people with aphasia

“It’s improved the whole lifestyle”: Exploring the family perspective of participation in a Gavel Club for people with aphasia

The meaning of aphasia centres from the perspectives of people with aphasia and their relatives: understanding participation in the Dutch context

Peer-to-peer support: digital networking in aphasia to improve quality of life (PeerPAL)

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