“I Assumed It Would Be Somebody Who Had a Stroke That Was Doing This”: Views of Stroke Survivors, Caregivers, and Health Professionals on Tailoring a Relaxation and Mindfulness Intervention

Atkinson, Thomas; Brown, Edith; Jones, Georgina; Sage, Karen; Wang, Xu

doi:10.3390/healthcare11030399

Cited by 4 publications

(1 citation statement)

References 55 publications

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“…Over time aphasiologists have suggested various strategies and techniques to promote the inclusion of PWA in research teams [ 8 ]. Indeed, their inclusion in stroke rehabilitation studies has increased as evidenced in allied health research: physiotherapy [ 9 ], occupational therapy [ 10 , 11 ], psychology [ 12 ] and multidisciplinary research [ 13 ]. Unfortunately, research so far involving PWA as research partners has revealed their involvement as tokenistic and nonmeaningful [ 8 ].…”

Section: Introductionmentioning

confidence: 99%

The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research

Charalambous,

Kountouri,

Schwyter

et al. 2023

Res Involv Engagem

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Background Patient and Public Involvement (PPI) in aphasia research requires researchers to include people with aphasia as research partners from the beginning of the study. Yet the quality of reporting on the level and type of involvement is poorly documented in the absence of a framework to guide PPI in aphasia research. This study aimed to extract the items and statements relevant for the development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for designing and implementing PPI in aphasia research, in collaboration with people with aphasia. Method The method recommended by the EQUATOR network was followed. This involved: (1) evidence from a scoping review, (2) a thematic analysis of the in-depth interviews, of people with stroke and aphasia, on the topics to be included in the pilot draft, (3) a two round Delphi survey for item/statement selection and (4) an experts’ consensus meeting. The research team involved two PPI partners with chronic stroke-induced aphasia. The research process involved co-design and was informed by the Dialogue model. Results Twenty-three panellists, from 13 countries, voted in round one with 87% (20/23) responding in round two. The final PAOLI framework includes the following 17 items (with 66 descriptive statements): establish collaborations, recruit patients, gain informed consent, organize induction meetings, train patient partners, create communication links, engage communication partners, conceptualize topics, establish research priorities, reach consensus, work with co-design methods, develop proposals, assist with dissemination of results, promote implementation of the outcomes, support patient partners and promote self-evaluation, monitor progress and assess impact of the patient involvement. These items were considered by the panellists as the most relevant for the involvement of people with aphasia as research partners. Conclusion The PAOLI is the first international consensus framework for guiding patient involvement in aphasia research. Researchers are encouraged to adopt the framework to improve the quality of their research by promoting the meaningful involvement of people with aphasia within the research team from the start.

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Section: Introductionmentioning

confidence: 99%

The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research

Charalambous,

Kountouri,

Schwyter

et al. 2023

Res Involv Engagem

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Nursing’s Role in Psychosocial Health Management After a Stroke Event: A Scientific Statement From the American Heart Association

Zrelak,

Seagraves,

Belagaje

et al. 2024

Stroke

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INTRODUCTION: Stroke can have profound psychosocial health implications. These constructs are often overlooked and undertreated yet can be as devastating as the physical, functional, and cognitive consequences after stroke. AIM: This scientific statement aims to evaluate 5 important aspects of psychosocial health (depression, stress, anxiety, fatigue, and quality of life) after a stroke to provide a framework for related nursing care across the poststroke continuum. METHODS: A narrative review of the literature published from 2018 to 2023 was conducted with databases such as PubMed/MEDLINE, ClinicalTrials.gov, PsychInfo/EBSCOHost, PsychArticles, CINHAL, and the Cochrane Library. RESULTS: Findings reveal a gap in evidence-based nursing interventions for addressing poststroke psychosocial needs. Critical strategies for shaping therapeutic nursing care include enhanced screening with validated tools; educating stroke survivors, families, and staff on symptom recognition, prevention, and treatment; and ensuring appropriate pharmacological management and access to psychological and psychosocial interventions, including referrals to social services and other essential support systems. Care should be comprehensive and interdisciplinary. Nurse-led research can benefit from more inclusive inclusion, including individuals with recurrent strokes and preexisting psychosocial conditions, focusing on the impact of structural racism and care disparities and expanding evidence-based nursing interventions. CONCLUSIONS: Although there is limited high-level evidence on the nursing care for patients with suboptimal psychosocial health after stroke, nurses have a crucial role in addressing these needs. Enhanced screening, assessment, supportive services, and education are vital to ensure that patients receive the necessary treatment and care.

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In-person and online mixed method non-randomised studies exploring feasibility and acceptability of HEADS: UP, an adapted Mindfulness-Based Stress Reduction programme for stroke survivors experiencing symptoms of anxiety and depression

Lawrence,

Davis,

Clark

et al. 2024

Pilot Feasibility Stud

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Background Depression and anxiety are prevalent after stroke and associated with poor outcomes. We previously co-developed a stroke-specific self-management intervention, HEADS: UP (Helping Ease Anxiety and Depression after Stroke). The two studies reported here aimed to test the feasibility and acceptability of the HEADS: UP course and supporting materials, and research processes ahead of a definitive trial. Methods We recruited community-dwelling stroke survivors (SS) ≥ 3 months post-stroke, with symptoms of mood disorder (Hospital Anxiety and Depression Scale ≥ 8). Participants could ‘enrol’ a family member/ ‘other’ to take part with them, if desired. Study 1 tested HEADS: UP delivered in-person, and informed optimisation of research processes and intervention delivery and materials. In a pragmatic response to Covid-related socialising restrictions, HEADS: UP was then adapted for online delivery, tested in Study 2. The primary outcome (both studies) was the feasibility (acceptability, fidelity) of the intervention and of research processes. Quantitative data (including patient-reported outcome measures (PROMs) assessing mood and quality of life) and qualitative data were collected pre-/post-intervention. Descriptive statistics were used to analyse quantitative data; a thematic framework approach was used to analyse qualitative data. Both studies received ethical approval prior to commencement. Results Study 1 Feasibility: 13 (59.1%) of 22 potentially eligible stroke survivors consented; aged 66 (median, interquartile range (IQR) 14); male (n = 9; 69%); 28 (IQR 34) months post-stroke. Of these, n = 10 (76.9%) completed PROMS pre-intervention; n = 6 (46.2%) post-intervention. Acceptability: Nine (69.2%) of the 13 participants attended ≥ 4 core intervention sessions. Aspects of screening and data collection were found to be burdensome. Study 2 Feasibility: SS n = 9 (41%) of 22 potentially eligible stroke survivors consented; aged 58 years (median; IQR 12); male (n = 4; 44.4%); 23 (IQR 34) months post-stroke. Of these, n = 5 (55.6%) completed PROMS pre-intervention; n = 5 (55.6%) post-intervention. Acceptability: Five (55.6%) of the 9 participants attended ≥ 4 core sessions. They found online screening and data collection processes straightforward.

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“I Assumed It Would Be Somebody Who Had a Stroke That Was Doing This”: Views of Stroke Survivors, Caregivers, and Health Professionals on Tailoring a Relaxation and Mindfulness Intervention

Cited by 4 publications

References 55 publications

The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research

The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research

Nursing’s Role in Psychosocial Health Management After a Stroke Event: A Scientific Statement From the American Heart Association

In-person and online mixed method non-randomised studies exploring feasibility and acceptability of HEADS: UP, an adapted Mindfulness-Based Stress Reduction programme for stroke survivors experiencing symptoms of anxiety and depression

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