“Loneliness can also kill:” a qualitative exploration of outcomes and experiences of the SUPERB peer-befriending scheme for people with aphasia and their significant others

Moss, Becky; Behn, Nicholas; Northcott, Sarah; Monnelly, Katie; Marshall, Jane; Simpson, Alan; Thomas, Shirley; McVicker, Sally; Goldsmith, Kimberley; Flood, Chris; Hilari, Katerina

doi:10.1080/09638288.2021.1922519

Cited by 9 publications

(6 citation statements)

References 33 publications

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“…PwA became more assertive in providing support and advice to their peers and SLTS assumed a more background facilitation role during meetings. This was also reflected in recent research where 'befriendees' were noted to provide mutual peer-support (Moss et al, 2021). Levy et al, (2022) encourages aphasia groups to empower people to live successfully with aphasia and combat feelings of seclusion.…”

Section: Discussionmentioning

confidence: 92%

“…Peer-befrienders with aphasia view their role as a way to improve the lives of others, while also reclaiming facets of their own pre-stroke identities (Northcott et al, 2022). Peer-befriending initiatives also highlight the reciprocal advantages of these relationships, where both the befriender and befriendee within the dyad report mutual benefits (Moss et al, 2021). Skea et al, (2011) attribute this in part to the "upwards" and "downwards" comparison these group settings afford, where PwA have the opportunity to interact with those whose abilities are greater or less than their own.…”

Section: Social Engagementmentioning

confidence: 99%

“…Aphasia, commonly acquired post-stroke, is predominantly discussed in relation to disrupted language function impacting literacy, and comprehension and expression of the spoken word (Fridriksson & Hillis, 2021). However, recent research argues that the consequential negative social participation impact arising from aphasia, such as social exclusion, isolation, and depression, have equally profound ramifications as aphasia itself (Moss et al, 2021). Compared to people without post-stroke aphasia, people with aphasia (PwA) are at higher risk of detrimental psychosocial outcomes such as poor self-perception, social isolation, and loneliness (Kristo & Mowl, 2022).…”

Section: Introductionmentioning

confidence: 99%

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“You’ll find most people who got involved with the Café couldn’t do without it now” – Socialising in an online versus in-person Aphasia Café

Bell,

Horgan,

Kelly

2024

ACS

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BACKGROUND: People with Aphasia (PwA) experience detrimental consequences post-stroke which can result in limited opportunities for social engagement and poor psychosocial ramifications. Peer support can improve psychosocial outcomes. Unfortunately, Covid-19 related social restrictions resulted in the closure of social outlets for PwA, further exacerbating social isolation. Some social networks transitioned online during this period. One such network was the Aphasia Café, a social group for PwA, supported by Speech and Language Therapy students (SLTS). OBJECTIVE: This study aimed to investigate the experiences, knowledge, attitudes, and beliefs about the Aphasia Café (in-person and online), within the context of pandemic-related social restrictions, from the perspectives of PwA and the SLTS who support them. METHODS: 16 SLTS participated in one of five focus groups. Six PwA were individually interviewed. Semi-structured questionnaires facilitated inductive and deductive data collection which were analysed using Framework Analysis. RESULTS: Observed themes related to the in-person and online Aphasia Café will be reported in this paper. Overarching themes observed from both SLTS and PwA include: ‘Socialising changes during Covid-19 pandemic’, ‘Awareness and Purpose of the Aphasia Café’, ‘Perceptions of an Online and In-Person Aphasia Café” (subthemes –accessibility, technology, time/timing, non-verbal communication, and social environment), and ‘Optimal Aphasia Café’ (PwA only). CONCLUSIONS: This study provides a unique perspective on the delivery of a supported informal conversation group from both PwA and the SLTS who facilitate it. Both online and in-person social spaces were considered to enhance the quality of life for PwA and give valuable experience for SLTS.

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Section: Discussionmentioning

confidence: 92%

Section: Social Engagementmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

“You’ll find most people who got involved with the Café couldn’t do without it now” – Socialising in an online versus in-person Aphasia Café

Bell,

Horgan,

Kelly

2024

ACS

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“…A few other intervention approaches to communication do not quite fit into any of the prior categories but may be of interest to specific providers. These include targeting speech/language and/or psychosocial outcomes through social groups [127], singing groups [128], mental health therapies specifically for persons with communication disorders ( [129], NCT04984239), and physical exercise [130].…”

Section: Language Speech and Communicationmentioning

confidence: 99%

Reversing the Ruin: Rehabilitation, Recovery, and Restoration After Stroke

Stockbridge

Bunker

Hillis

2022

Curr Neurol Neurosci Rep

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Purpose of Review Stroke is a common cause of disability in aging adults. A given individual’s needs after stroke vary as a function of the stroke extent and location. The purpose of this review was to discuss recent clinical investigations addressing rehabilitation of an array of overlapping functional domains. Recent Findings Research is ongoing in the domains of movement, cognition, attention, speech, language, swallowing, and mental health. To best assist patients’ recovery, innovative research has sought to develop and evaluate behavioral approaches, identify and refine synergistic approaches that augment the response to behavioral therapy, and integrate technology where appropriate, particularly to introduce and titrate real-world complexity and improve the overall experience of therapy. Summary Recent and ongoing trials have increasingly adopted a multidisciplinary nature — augmenting refined behavioral therapy approaches with methods for increasing their potency, such as pharmaceutical or electrical interventions. The integration of virtual reality, robotics, and other technological advancements has generated immense excitement, but has not resulted in consistent improvements over more universally accessible, lower technology therapy.

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“…Qualitative data from the SUPERB trial are rich and extensive and capture treatment enactment; they are reported elsewhere. 32 Here, we provide some illustrative comments, using pseudonyms, that demonstrate a degree of treatment enactment. There were instances where participants with aphasia undertook activities that they would not have done if it were not for their befriender.…”

Section: Treatment Enactmentmentioning

confidence: 99%

SUpporting wellbeing through PEeR-Befriending (SUPERB) feasibility trial: fidelity of peer-befriending for people with aphasia

et al. 2021

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ObjectiveTo evaluate systematically the fidelity of a peer-befriending intervention for people with aphasia.DesignSUpporting wellbeing through Peer-befriending (SUPERB) was a feasibility randomised controlled trial comparing usual care to usual care +peer-befriending. This paper reports on the fidelity of all intervention aspects (training and supervision of providers/befrienders; intervention visits) which was evaluated across all areas of the Behaviour Change Consortium framework.SettingCommunity.ParticipantsPeople with aphasia early poststroke and low levels of distress, randomised to the intervention arm of the trial (n=28); 10 peer-befrienders at least 1-year poststroke.InterventionPeer-befrienders were trained (4–6 hours); and received regular supervision (monthly group while actively befriending, and one-to-one as and when needed) in order to provide six 1-hour peer-befriending visits over 3 months.Main measuresMetrics included number and length of training, supervision sessions and visits. All training and supervision sessions and one (of six) visits per pair were rated against fidelity checklists and evaluated for inter-rater and intrarater reliability (Gwets AC1 agreement coefficient). Per-cent adherence to protocol was evaluated.ResultsAll peer-befrienders received 4–6 hours training over 2–3 days as intended. There were 25 group supervision sessions with a median number attended of 14 (IQR=8–18). Twenty-six participants agreed (92.8%) to the intervention and 21 (80.8%) received all six visits (median visit length 60 min). Adherence was high for training (91.7%–100%) and supervision (83%–100%) and moderate-to-high for befriending visits (66.7%–100%). Where calculable, inter-rater and intrarater reliability was high for training and supervision (Gwets AC1 >0.90) and moderate-to-high for intervention visits (Gwets AC1 0.44–1.0).ConclusionPlanning of fidelity processes at the outset of the trial and monitoring throughout was feasible and ensured good-to-high fidelity for this peer-befriending intervention. The results permit confidence in other findings from the SUPERB trial.Trial registration numberNCT02947776.

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“Loneliness can also kill:” a qualitative exploration of outcomes and experiences of the SUPERB peer-befriending scheme for people with aphasia and their significant others

Abstract: 2021): "Loneliness can also kill:" a qualitative exploration of outcomes and experiences of the SUPERB peer-befriending scheme for people with aphasia and their significant others, Disability and Rehabilitation,

Cited by 9 publications

References 33 publications

“You’ll find most people who got involved with the Café couldn’t do without it now” – Socialising in an online versus in-person Aphasia Café

“You’ll find most people who got involved with the Café couldn’t do without it now” – Socialising in an online versus in-person Aphasia Café

Reversing the Ruin: Rehabilitation, Recovery, and Restoration After Stroke

SUpporting wellbeing through PEeR-Befriending (SUPERB) feasibility trial: fidelity of peer-befriending for people with aphasia

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