Access G-AP: development of an accessible goal setting and action planning resource for stroke survivors with aphasia

Purpose: Goal setting is key to stroke rehabilitation, but access for people with aphasia is challenging. Based on the Goal setting and Action Planning (G-AP) framework, we developed an accessible goal setting resource (Access G-AP). Methods: Access G-AP was designed using a three-phase, user-centred design process. Phase 1: Access G-AP Draft A was designed using evidence-based recommendations. Phase 2: Draft A was reviewed by stroke survivors with aphasia (focus groups 1&2) and rehabilitation staff (questionnaire). Phase 3: Suggested recommendations informed Access G-AP Draft B, which was further reviewed by stroke survivors with aphasia (focus group 3). The final version of Access G-AP was approved by stroke survivors with aphasia at a debrief meeting. Data were analysed using content analysis. Results: Recommended design improvements included reducing text, adding bullet points, and diversifying images. Both participant groups highlighted that Access G-AP should be used collaboratively to support stroke survivor involvement. Staff recommended Access G-AP training and additional resources to support stroke survivors with severe aphasia. Conclusions: Access G-AP was co-developed to support people with aphasia to access and engage in stroke rehabilitation goal setting. Further research is required to establish the feasibility of Access G-AP in clinical practice

Evaluating conversation partner programmes: perspectives of people with aphasia

Background Stroke is the most common cause of disability in the western World. Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Aphasia is a chronic language disorder impairing comprehension, expression, reading, writing and spelling. The majority of people living with aphasia are over 65 years and live in the community. One of the most disabling impacts of aphasia is the way that it excludes the person from everyday conversation. People with Aphasia (PWA) frequently experience social isolation and marginalisation. The Conversation Partner Programme (CPP) is a community based aphasia intervention that emphasises communicative competence and life participation. Currently there is no national or international system for evaluating CPPs. Following policy imperatives for Patient and Public Involvement (PPI) and the recommendations of the World Report on Disability (WHO) it is important to involve service users in service design and evaluation. However, PWA are often excluded because of their communication disability. To create a CPP evaluation system PWA and other key stakeholder groups must determine core evaluation criteria. Service Learning (SL), the pedagogical tool used to implement the CPP in this study must also be examined because the mode of delivery is central to stakeholders' perceptions and experiences. Aims The primary aim is to: (1) use a Participatory Learning and Action (PLA) approach to include PWA and other key stakeholders as co-researchers in identifying CPP evaluation criteria. A secondary objective is to: (2) examine the effectiveness of SL the pedagogical tool underpinning the CPP. Methods Following a pilot study, the generation and analysis of qualitative data using a PLA approach was conducted. Using purposeful sampling, participants (n=26) including PWA (n=5); Speech and Language Therapists (SLTs) (n=5); students (n=9); educators (n=6) and the CPP co-ordinator (n=1) were recruited and involved as co-researchers. Using PLA techniques to generate and analyse data (Flexible Brainstorming, Card Sort, Direct Ranking; Seasonal Calendar and PLA interviewing) in individual groups, or in interstakeholder groups (n=22), co-researchers explored the lived experience of aphasia and identified CPP evaluation criteria. The principles of thematic analysis guided the co-analysis of data generated with stakeholder groups. Data generated in Ireland were presented to a leading non-governmental organisation for PWA in the United Kingdom, as a preliminary exploration of the transferability of findings. The effectiveness of SL was explored with key stakeholder groups using: (1) qualitative methods (PLA focus groups; interviews; orthodox focus groups) and (2) through a critical review of the SL literature in pre-professional healthcare curricula. Results In response to the primary research aims, co-researchers with aphasia generated eight themes in their own words to capture the lived experience of aphasia, including: (1) Back to pre-school; (2) Tiredness; (3) It’s Like in Prison; (4) Emotions; (5) Not able to talk the words; (6) Escape; (7) Changing and Adapting; and (8) Family. The multi-perspectival analysis of the CPP resulted in the identification and prioritisation of evaluation criteria from the emic perspective of stakeholders including: (1) shared understanding of structure, (2) clarity about the programme, (3) agreed evaluation mechanism, (4) linking with other organisations and (5) feedback. PWA reported that feelings of communicative incompetence were minimised and social connectedness was increased through participation in the programme. In response to the secondary research objective, SL appears to be an appropriate pedagogical tool to underpin the CPP because it supports mutuality and reciprocity in university and community partnerships. However the inconsistency in terminology to describe SL internationally and the paucity of robust methodological studies to establish effectiveness warrant further research. Conclusion This study critically interrogated communication disability as a barrier to inclusion in research. Using participatory research methods, PWA and other key stakeholders meaningfully participated as co-researchers in the evaluation of a primary care conversation intervention and examined the impacts of SL. This novel collaborative work generated new empirical evidence about the lived experience of aphasia and resulted in agreed CPP evaluation criteria. This study also found that SL is a suitable pedagogical tool to embed the CPP in a University setting. These findings will directly impact the Galway CPP and may be transferable to other similar conversation interventions nationally and internationally. Findings and methods will be of interest to healthcare professionals; service users; educators and researchers seeking to involve marginalised groups, especially people with communication disabilities, in scholarship and research.2021-12-1

Evaluating conversation partner programmes: perspectives of people with aphasia

Background Stroke is the most common cause of disability in the western World. Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Aphasia is a chronic language disorder impairing comprehension, expression, reading, writing and spelling. The majority of people living with aphasia are over 65 years and live in the community. One of the most disabling impacts of aphasia is the way that it excludes the person from everyday conversation. People with Aphasia (PWA) frequently experience social isolation and marginalisation. The Conversation Partner Programme (CPP) is a community based aphasia intervention that emphasises communicative competence and life participation. Currently there is no national or international system for evaluating CPPs. Following policy imperatives for Patient and Public Involvement (PPI) and the recommendations of the World Report on Disability (WHO) it is important to involve service users in service design and evaluation. However, PWA are often excluded because of their communication disability. To create a CPP evaluation system PWA and other key stakeholder groups must determine core evaluation criteria. Service Learning (SL), the pedagogical tool used to implement the CPP in this study must also be examined because the mode of delivery is central to stakeholders' perceptions and experiences. Aims The primary aim is to: (1) use a Participatory Learning and Action (PLA) approach to include PWA and other key stakeholders as co-researchers in identifying CPP evaluation criteria. A secondary objective is to: (2) examine the effectiveness of SL the pedagogical tool underpinning the CPP. Methods Following a pilot study, the generation and analysis of qualitative data using a PLA approach was conducted. Using purposeful sampling, participants (n=26) including PWA (n=5); Speech and Language Therapists (SLTs) (n=5); students (n=9); educators (n=6) and the CPP co-ordinator (n=1) were recruited and involved as co-researchers. Using PLA techniques to generate and analyse data (Flexible Brainstorming, Card Sort, Direct Ranking; Seasonal Calendar and PLA interviewing) in individual groups, or in interstakeholder groups (n=22), co-researchers explored the lived experience of aphasia and identified CPP evaluation criteria. The principles of thematic analysis guided the co-analysis of data generated with stakeholder groups. Data generated in Ireland were presented to a leading non-governmental organisation for PWA in the United Kingdom, as a preliminary exploration of the transferability of findings. The effectiveness of SL was explored with key stakeholder groups using: (1) qualitative methods (PLA focus groups; interviews; orthodox focus groups) and (2) through a critical review of the SL literature in pre-professional healthcare curricula. Results In response to the primary research aims, co-researchers with aphasia generated eight themes in their own words to capture the lived experience of aphasia, including: (1) Back to pre-school; (2) Tiredness; (3) It’s Like in Prison; (4) Emotions; (5) Not able to talk the words; (6) Escape; (7) Changing and Adapting; and (8) Family. The multi-perspectival analysis of the CPP resulted in the identification and prioritisation of evaluation criteria from the emic perspective of stakeholders including: (1) shared understanding of structure, (2) clarity about the programme, (3) agreed evaluation mechanism, (4) linking with other organisations and (5) feedback. PWA reported that feelings of communicative incompetence were minimised and social connectedness was increased through participation in the programme. In response to the secondary research objective, SL appears to be an appropriate pedagogical tool to underpin the CPP because it supports mutuality and reciprocity in university and community partnerships. However the inconsistency in terminology to describe SL internationally and the paucity of robust methodological studies to establish effectiveness warrant further research. Conclusion This study critically interrogated communication disability as a barrier to inclusion in research. Using participatory research methods, PWA and other key stakeholders meaningfully participated as co-researchers in the evaluation of a primary care conversation intervention and examined the impacts of SL. This novel collaborative work generated new empirical evidence about the lived experience of aphasia and resulted in agreed CPP evaluation criteria. This study also found that SL is a suitable pedagogical tool to embed the CPP in a University setting. These findings will directly impact the Galway CPP and may be transferable to other similar conversation interventions nationally and internationally. Findings and methods will be of interest to healthcare professionals; service users; educators and researchers seeking to involve marginalised groups, especially people with communication disabilities, in scholarship and research.2021-12-1

Who decides what criteria are important to consider in exploring the outcomes of Conversation Approaches? A Participatory Health Research Study.

Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Qualitative research methods are increasingly used to capture the complexity of service users’ experiences of health and illness; however, the voice of service users with aphasia continues to be limited in published healthcare literature. This participatory research study included people with aphasia as co-researchers in the exploration of aphasia and a Conversation Partner Programme (CPP)We are grateful to the following organisations for their collaboration and support: The Department of Speech and Language Therapy, PCCC, HSE West, Galway, Ireland, http://hse.ie/eng/services/list/ 1/LHO/Galway/Therapy/ and Connect (the communication disability network) www.ukconnect.orgpeer-reviewe

Addressing the long term impacts of aphasia: How far does the Conversation Partner Programme go?

Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Qualitative research methods are increasingly used to capture the complexity of service users’ experiences of health and illness; however, the voice of service users with aphasia continues to be limited in published healthcare literature. This participatory research study included people with aphasia as co-researchers in the exploration of aphasia and a Conversation Partner Programme (CPP)We are grateful to the following organisations for their collaboration and support: The Department of Speech and Language Therapy, PCCC, HSE West, Galway, Ireland, http://hse.ie/eng/services/list/1/LHO/Galway/Therapy/ and Connect (the communication disability network) www.ukconnect.org

Training socially responsive healthcare graduates: Is Service Learning an effective educational approach?

Health care educators strive to train graduates who are socially responsive and can act as “change agents” for communities they serve. Service learning (SL) is increasingly being used to teach the social aspects of health care and develop students’ social responsiveness. However, the effectiveness of SL as an educational intervention has not been established

Who decides what criteria are important to consider in exploring the outcomes of Conversation Approaches? A Participatory Health Research Study.

Approximately 176,000 new individuals in the United Kingdom and Ireland are diagnosed with stroke annually with up to one third experiencing aphasia. Qualitative research methods are increasingly used to capture the complexity of service users’ experiences of health and illness; however, the voice of service users with aphasia continues to be limited in published healthcare literature. This participatory research study included people with aphasia as co-researchers in the exploration of aphasia and a Conversation Partner Programme (CPP)We are grateful to the following organisations for their collaboration and support: The Department of Speech and Language Therapy, PCCC, HSE West, Galway, Ireland, http://hse.ie/eng/services/list/ 1/LHO/Galway/Therapy/ and Connect (the communication disability network) www.ukconnect.orgpeer-reviewe

New perspectives, theory, method, and practice: Qualitative research and innovation in speech-language pathology

Purpose: Research in speech-language pathology has been dominated by experimental, empirical, and scientific approaches, which build on hypothesis testing and logical, deductive reasoning. Qualitative approaches stem from a different paradigm or world view which imply different questions and methodologies which, for example, emphasise codesign, reciprocity, individual experience and context. This article explores the relationship between qualitative inquiry in the field of speech-language pathology and innovation. It aims to show how the aspirations of the profession can be supported, and how innovation can be achieved, through research which sheds light on the lived experiences and perceptions of clients and families and builds an understanding of how they function in their everyday contexts. Method: We summarise qualitative approaches in speech-language pathology, explain the notion of innovation, and review qualitative research as a source of theoretical, methodological, and practice innovation in speech-language pathology. Result: Not only has qualitative inquiry underpinned examples of theoretical, methodological and practice innovations in speech-language pathology, but it can also play a part in enhancing translation and implementation of research innovations. Conclusion: An explicit consideration of what we mean by innovation is useful for speech-language pathologists. Qualitative research complements other forms of research in the field and has prompted new theoretical understandings, new methodologies and methods of research, and new ways to deliver our services in ways that are responsive to our clients and communities

Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research

Purpose: International health and social care policy increasingly draws on stakeholder experiences and opinions. The distinctions between various approaches to researching “insider” perspectives are contentious. This article explores features (e.g. philosophy, ethics, and power dynamics) of qualitative approaches and public and patient involvement (PPI) in communication disorder research and explicates the blurred boundaries between them. Method: We use two case studies involving PPI contributors with aphasia – an Irish mixed methodologies study and a Danish qualitative study - to illustrate PPI in research and thus demonstrate how researchers can bridge the gap between theoretical considerations and research implementation Result: There are important distinctions between PPI in research and qualitative approaches (e.g. origins, roles, and reimbursement) and many blurred boundaries (e.g. inclusion, openness to mutual learning and “insider” perspectives). A key difference is that PPI contributors take an active role at project level and more flexibility in roles is required in PPI research. These flexible and varied roles reflect the shared decision-making powers between lay and professional researchers. Conclusion: PPI can add innovation to qualitative and mixed methods communication disorder research as illustrated in both case studies. However, researchers wishing to include PPI must embrace and respond to the evolving and flexible nature of PPI relationships and processes. Flexibility, negotiation and continuous reflection on methodological approaches, power dynamics, roles and co-created knowledge will impact and transform the field of research in communication disorders. </p