Stroke Research Staff’s Experiences of Seeking Consent from People with Communication Difficulties: Results of a National Online Survey

Jayes, Mark; Palmer, Rebecca

doi:10.1310/tsr2105-443

Cited by 14 publications

(32 citation statements)

References 17 publications

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Section: Introductionmentioning

confidence: 99%

“…The lack of training and resources has been identified as potential reasons for inappropriate capacity assessment, which leads to the exclusion of PWA from clinical and research studies, even by specialist staff, such as stroke research staff (Jayes & Palmer, 2014). Jayes and Palmer (2014) found that only 18% of 75 stroke research staff used accessible information when obtaining consent from PWA. Rowland and McDonald (2009) found that capacity assessors lacked the skills as effective communicators and were unable to modify the process to support communication, which led to incorrect conclusions about capacity for decision-making.…”

Section: Introductionmentioning

confidence: 99%

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Decision-making capacity in aphasia: SLT’s contribution in England

2017

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Background: Individuals' right to be involved with decisions regarding their health and social care is the cornerstone for modern patientcentred care. Decision-making is a complex process that involves multiple cognitive and linguistic abilities. These are often challenging for people with aphasia (PWA). The Mental Capacity Act (MCA) Code of Practice (2007) recommends that speech and language therapists (SLTs) support capacity assessments for individuals with communication problems, such as PWA. To date, little is known regarding SLTs' involvement in the UK for supporting decision-making and capacity assessment for PWA. Aims: This research provides data to document when, how, and the extent to which SLTs are being used in capacity assessment for PWA in England. We also determined SLTs' training and resource needs in capacity assessments, and their role in inter-professional training. Methods & Procedures: 56 SLTs working with PWA from a wide range of clinical settings in England were recruited; they completed a secure questionnaire using the online survey tool Survey Monkey. The questionnaire collected information in the following areas: knowledge and awareness of the MCA; current involvement of SLTs in capacity assessments and decision-making; inter-professional understanding of SLTs roles in capacity assessments; and training needs of SLTs. Outcomes & Results: The SLTs who participated in this survey indicated that they were not regularly involved to support capacity assessment for PWA. Moreover, they also reported that other professionals on the care team did not fully recognise or utilise their skills in supporting capacity assessment for PWA. Moreover, SLTs were not solicited to train professionals regarding communication difficulties in aphasia and its impact on capacity assessments. SLTs wanted profession-specific training to fulfil the role of supporting PWA in capacity assessments more effectively and reliably. Conclusions: Healthcare professionals have an ethical duty to ensure that judgements of capacity are unbiased and accurate. SLTs have an important contribution to make but their skills and knowledge are not fully recognised or utilised. These findings highlight an important need to raise the profile of SLTs' skills and expertise amongst professionals through education and/or inter-professional communications. This would enable SLTs to be regularly and effectively utilised in capacity assessments and decision-making for PWA. ARTICLE HISTORY

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Decision-making capacity in aphasia: SLT’s contribution in England

2017

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“…An outcome of this refinement was that the people with aphasia who took part reported increased confidence in communicating and felt stimulated and empowered to improve future services for those with similar difficulties. However, although there have been some positive outcomes [23], few study protocols and research include people with aphasia, despite the potential patient and service gains [23,24]. Failure to include this population in stroke research poses the question of the generalisability of research findings to stroke survivors with communication difficulties.…”

Section: Introductionmentioning

confidence: 99%

“Living in a foreign country”: experiences of staff–patient communication in inpatient stroke settings for people with post-stroke aphasia and those supporting them

Clancy

Povey

Rodham

2018

Disability and Rehabilitation

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Purpose: Staff-patient communication in in-patient stroke settings is viewed as challenging for stroke survivors with aphasia and those supporting them. This study sought to explore these experiences from the perspectives of stroke survivors, their carers and healthcare professionals. Methods: A qualitative study where stroke survivors with aphasia, carers and healthcare professionals were interviewed (audio recorded) one-to-one or via focus group. Stroke survivors were at least 6 months post-stroke and had a self-reported mild to moderate level of post-stroke aphasia. Transcripts for each group were analysed separately using inductive thematic analysis; followed by an integrative analysis. Results: Six stroke survivors with aphasia, ten carers, and six healthcare professionals were recruited. Three overarching themes were identified: 'being in a foreign country', 'finding a voice', and 'you're just a number'. A dynamic model of communication is proposed offering a framework for understanding the relationships between 'the context', 'the people' and 'the interactions'. Conclusions: Communication was viewed as important but challenging by all three groups. To maximise staff-patient interactions in the future, attention needs to be paid to: the psychosocial needs of stroke survivors and their carers, ongoing staff training and support for the healthcare professionals supporting them, and the provision of an aphasia-friendly and a communicatively stimulating ward environment.

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“…Determining whether the individual can demonstrate capacity for a specific decision, at a specific time is critical to striking the balance between respecting patient autonomy and acting in a patient's best interest. Communication disorders, such as aphasia, present challenges for assessing DMC (Ferguson, Duffield, & Worrall, 2010;Jayes & Palmer, 2014;Shames, 2012;Suleman & Hopper, 2016;Zuscak, Peisah, & Ferguson, 2015). A skilled capacity assessment for people with aphasia by health-and social-care professionals will improve care outcomes and ensure that the principles of patient-centred care are upheld.…”

mentioning

confidence: 99%

“…In such situations, provision should be made to ensure the individual's communication needs are meet using simple language, visual aids or any other means suitable for that particular patient. In the context of communication difficulties experienced by people with aphasia, the accuracy and reliability of DMC assessments often remain questionable, especially when conducted by untrained or less optimally trained professionals, and by those professionals who are unfamiliar with aphasia (Carling-Rowland, Black, McDonald, & Kagan, 2014;Ferguson et al, 2010;Jayes & Palmer, 2014;Suleman & Hopper, 2016). It is not surprising that studies have found that people with aphasia were presumed to lack capacity due to their communication difficulties (Carling-Rowland & Wahl, 2010;Pachet, Allan, & Erskine, 2012).…”

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confidence: 99%

Profession-specific training on decision-making and capacity assessment in aphasia for speech-language therapy students

Bose

McFiggans

2019

Aphasiology

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Background: Speech and Language Therapists (SLTs) play a vital role in supporting people with aphasia to communicate. Recent studies have shown that despite SLTs' expertise, skills, and knowledge to support people with aphasias' communication needs; they are not regularly involved in the decision-making and capacity (DMC) assessments for people with aphasia. Literature suggests three key contributors to this under-involvement: (1) SLTs do not feel they understand their role in a DMC assessment, (2) they do not feel there is enough professionspecific training, and (3) they feel members of the multidisciplinary team do not fully understand their role and responsibilities to involve them in the process. Aims: This research reports the development of a professionspecific DMC training programme for SLT trainees, and its implementation to document change in their confidence, knowledge and understanding of the DMC process in people with aphasia. Methods & Procedures: Thirty-nine SLT students attended a two-hour DMC training session conducted in three phases: pre-training questionnaire, the training programme, and the post-training questionnaire. Topics in the training programme included: the knowledge and tenets of the Mental Capacity Act (MCA); DMC for people with aphasia, focusing specifically on the barriers faced by people with aphasia and professionals; the SLTs' role within a multidisciplinary team regarding DMC assessments; and resources available for facilitating DMC assessments. The change in participants score from pre-to post-training questionnaire was taken as a measure of efficacy of the training programme. Outcomes & Results: Following training there was a significant increase in the confidence levels of SLT students in terms of ability to complete capacity assessments and train others in their role within a capacity assessment. Participants also had a better understanding of the MCA and an increased knowledge of resources available to support people with aphasia in these assessments. These results demonstrate a crucial need for profession-specific training, which has implications for inter-professional education. Conclusions: The findings highlight the effectiveness of a short training session in increasing SLT trainees' knowledge and confidence in DMC for aphasia, and improving their understanding of SLTs' role and responsibilities. It is anticipated that this type of training will place SLTs in a better position for future clinical practice, reducing the risks ARTICLE HISTORY

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Stroke Research Staff’s Experiences of Seeking Consent from People with Communication Difficulties: Results of a National Online Survey

Abstract: For research staff to work more effectively with this population, study protocols need to be more inclusive of people with communication difficulties, and staff need better access to ethically approved, accessible communication resources and appropriate training.

Cited by 14 publications

References 17 publications

Decision-making capacity in aphasia: SLT’s contribution in England

Decision-making capacity in aphasia: SLT’s contribution in England

“Living in a foreign country”: experiences of staff–patient communication in inpatient stroke settings for people with post-stroke aphasia and those supporting them

Profession-specific training on decision-making and capacity assessment in aphasia for speech-language therapy students

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