‘It was really dark’: the experiences and preferences of people with aphasia to manage mood changes and depression

Baker, Caroline; Worrall, Linda; Rose, Miranda; Ryan, Brooke

doi:10.1080/02687038.2019.1673304

Cited by 54 publications

(46 citation statements)

References 76 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…There were some differences compared with a ‘standard’ approach to qualitative data collection in order to successfully elicit and interpret responses from people who have difficulty in communicating. 42 43 For example, based on a prior knowledge of participants’ communication difficulties, adaptations were made where necessary, such as offering a range of possible responses, interpreting participant gestures, more closed questioning and allowing input from carers.…”

Section: Methodsmentioning

confidence: 99%

Singing for people with aphasia (SPA): results of a pilot feasibility randomised controlled trial of a group singing intervention investigating acceptability and feasibility

et al. 2021

View full text Add to dashboard Cite

ObjectivesPilot feasibility randomised controlled trial (RCT) for the singing groups for people with aphasia (SPA) intervention to assess: (1) the acceptability and feasibility of participant recruitment, randomisation and allocation concealment; (2) retention rates; (3) variance of continuous outcome measures; (4) outcome measure completion and participant burden; (5) fidelity of intervention delivery; (6) SPA intervention costs; (7) acceptability and feasibility of trial and intervention to participants and others involved.DesignA two-group, assessor-blinded, randomised controlled external pilot trial with parallel mixed methods process evaluation and economic evaluation.SettingThree community-based cohorts in the South-West of England.ParticipantsEligible participants with post-stroke aphasia were randomised 1:1 to SPA or control.InterventionThe manualised SPA intervention was delivered over 10 weekly singing group sessions, led by a music facilitator and assisted by an individual with post-stroke aphasia. The intervention was developed using the Information-Motivation-Behavioural skills model of behaviour change and targeted psychosocial outcomes. Control and intervention participants all received an aphasia information resource pack.Outcome measuresCollected at baseline, 3 and 6 months post-randomisation, candidate primary outcomes were measured (well-being, quality of life and social participation) as well as additional clinical outcomes. Feasibility, acceptability and process outcomes included recruitment and retention rates, and measurement burden; and trial experiences were explored in qualitative interviews.ResultsOf 87 individuals screened, 42 participants were recruited and 41 randomised (SPA=20, control=21); 36 participants (SPA=17, control=19) completed 3-month follow-up, 34 (SPA=18, control=16) completed 6-month follow-up. Recruitment and retention (83%) were acceptable for a definitive RCT, and participants did not find the study requirements burdensome. High fidelity of the intervention delivery was shown by high attendance rates and facilitator adherence to the manual, and participants found SPA acceptable. Sample size estimates for a definitive RCT and primary/secondary outcomes were identified.ConclusionsThe SPA pilot RCT fulfilled its objectives, and demonstrated that a definitive RCT of the intervention would be both feasible and acceptable.Trial registration numberNCT03076736.

show abstract

Section: Methodsmentioning

confidence: 99%

Singing for people with aphasia (SPA): results of a pilot feasibility randomised controlled trial of a group singing intervention investigating acceptability and feasibility

et al. 2021

View full text Add to dashboard Cite

show abstract

“…A notable exception in the literature to the dominant focus on psychological needs in chronic aphasia is a recent Australian study (Baker et al . 2020): of the 10 individuals interviewed regarding depression and stepped psychological care, seven were < 6 months post‐onset. They observed three core themes: onset as a traumatic event leading to mood difficulties and depression; people with aphasia navigating these changes with limited psychological support services in stroke rehabilitation; and a need for positivity, supported communication and access to individually tailored therapy through stepped psychological care.…”

Section: Discussionmentioning

confidence: 99%

‘Emotion is of the essence. … Number one priority’: A nested qualitative study exploring psychosocial adjustment to stroke and aphasia

Moss

Northcott

Behn

et al. 2021

Intl J Lang & Comm Disor

View full text Add to dashboard Cite

Background: Stroke and aphasia can have a profound impact on people's lives, and depression is a common, frequently persistent consequence. Social networks also suffer, with poor social support associated with worse recovery. It is essential to support psychosocial well-being post-stroke, and examine which factors facilitate successful adjustment to living with aphasia. Aims: In the context of a feasibility randomized controlled trial of peer-befriending (SUPERB), this qualitative study explores adjustment for people with aphasia in the post-acute phase of recovery, a phase often neglected in previous research. Methods & Procedures: Semi-structured interviews were conducted with 20 people with aphasia and 10 significant others, who were purposively sampled from the wider group of 56 people with aphasia and 48 significant others. Interviews took place in participants' homes; they were analysed using framework analysis.Outcomes & Results: Participants with aphasia were 10 women and 10 men; their median (interquartile range-IQR) age was 70 (57.5-77.0) years. Twelve participants had mild aphasia, eight moderate-severe aphasia. Significant others were six women and four men with a median (IQR) age of 70.5 (43-79) years. They identified a range of factors that influenced adjustment to aphasia post-stroke. Some were personal resources, including mood and emotions; identity/sense of self; attitude and outlook; faith and spirituality; and moving forward. Significant others also talked about the impact of becoming carers. Other factors were external sources of support, including familial and other relationships; doctors, nurses and hospital communication; life on the ward; therapies and therapists; psychological support, stroke groups; and community and socializing.Conclusions & Implications: To promote adjustment in the acute phase, hospital staff should prioritize the humanizing aspects of care provision. In the post-acute phase, clinicians play an integral role in supporting adjustment and can help by focusing on relationship-centred care, monitoring mental health, promoting quality improvement across the continuum of care and supporting advocacy.

show abstract

“… 1 , 2 Aphasia has far‐reaching psychosocial consequences for quality of life, mental health, social networks, relationships, return to work, access to support and social participation. 3 , 4 , 5 , 6 , 7 , 8 , 9 , 10 , 11 , 12 , 13 , 14 , 15 , 16 There is a growing research focus on supporting people with post‐stroke aphasia (PWA) to achieve participation outcomes in addition to impairment‐focused rehabilitation approaches. 17 , 18 Such interventions may include raising aphasia awareness, improving communicative accessibility, targeting social inclusion, communication partner training and connecting PWA with opportunities for authentic, meaningful social participation.…”

Section: Introductionmentioning

confidence: 99%

‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults

Manning

MacFarlane

Hickey

et al. 2021

Health Expectations

View full text Add to dashboard Cite

Background In the context of increasing incidence of stroke in working aged adults, there is a specific need to explore the views of working aged adults with post‐stroke aphasia, whose communication difficulties may result in restricted social participation, loss of employment and changed relationship and parenting roles. This study aimed to explore the perspectives of working aged adults with post‐stroke aphasia in relation to social participation and living well with aphasia (LWA). Design and participants We conducted qualitative interviews with 14 people with post‐stroke aphasia (PWA). Data were analysed following principles of reflexive, thematic analysis. Patient or Public Contribution: A Public and Patient Involvement aphasia advisory group inputted into the study design and interpretation of data. Results Social participation spanned 5 themes: Relationships and roles; Social support; Peer network, Aphasia awareness; and Employment and training. Meaningful, interesting social participation for LWA is individually defined. Working aged PWA may require flexible support with parenting, accessing a diverse social network and finding opportunities for meaningful social connection, training and employment. Conclusions The findings extend knowledge of social participation in the context of LWA for working aged adults by elucidating the individually defined nature of meaningful participation and how PWA may need flexible support with parenting, accessing a diverse social network and training and employment. For aphasia research, policy and services to be relevant, it is crucial that working aged PWA are meaningfully involved in setting the aphasia agenda.

show abstract

‘It was really dark’: the experiences and preferences of people with aphasia to manage mood changes and depression

Cited by 54 publications

References 76 publications

Singing for people with aphasia (SPA): results of a pilot feasibility randomised controlled trial of a group singing intervention investigating acceptability and feasibility

Singing for people with aphasia (SPA): results of a pilot feasibility randomised controlled trial of a group singing intervention investigating acceptability and feasibility

‘Emotion is of the essence. … Number one priority’: A nested qualitative study exploring psychosocial adjustment to stroke and aphasia

‘I hated being ghosted’ – The relevance of social participation for living well with post‐stroke aphasia: Qualitative interviews with working aged adults

Contact Info

Product

Resources

About