Using longitudinal qualitative research to explore the experience of receiving and using augmentative and alternative communication.

BACKGROUND: People who have communication difficulties may benefit from using augmentative and alternative communication (AAC). Understanding and measuring outcomes from the use of AAC is an important part of evaluating the impact of devices and services. Outcome measurement needs to reflect the changing nature of the impact of using AAC on an individual's ability to participate in activities of daily life. There is a limited understanding of the concepts that should inform the evaluation of outcomes from AAC device provision, nor how people's expectations from AAC may change over time. AIMS: To inform the development of a patient-reported outcome measure for AAC by understanding more about people's expectations from AAC and how these change over time. METHODS & PROCEDURES: A longitudinal qualitative research study was designed and carried out with seven participants over a period of 2 years. Participants were recruited from a regional specialist assessment service for AAC in the south-west of the UK. Four semi-structured interviews were carried out: (1) before assessment for AAC, (2) after assessment, (3) directly after provision of an AAC device and (4) between 6 and 12 months after provision. An original analytic method was used in this study that built on the principles of longitudinal interpretative phenomenology analysis, applied with a dialogic theoretical lens. This approach enabled the inclusion of a range of multimodal and embodied data collected to this study and allowed the research team to draw out salient themes across the cohort group while attending to the influence of time and context on experience. OUTCOMES & RESULTS: The results confirm and extend the three core concepts that were used to guide analysis: changes; contexts; future possibilities. The contextual and temporal influences on outcomes attainable from AAC for this cohort were also identified and illustrated through cross-case comparison. Deeper, analytic, and conceptual engagement with theory, which was then applied to analysis of the data, provided methodological rigour in the study. The results enhance our understanding of people's hopes and expectations from AAC and how these change over time. CONCLUSIONS & IMPLICATIONS: This qualitative longitudinal research study provides new insights into the journeys of people who experience communication disability, and the shifting nature of their sense of identity as they engage with, and learn from using, AAC. The study is significant as it attends to the dynamic nature of experience and how contextual and experiential factors influence people's hopes and expectations from AAC. The paper presents an original application of longitudinal qualitative research methodology with people who use AAC which can be further applied and tested in the field of communication disability research. WHAT THIS PAPER ADDS: What is already known on this subject We did not know the impact that time has on the concepts that have been identified to represent important outcomes from AAC. The existing concepts used to define outcomes from AAC were not adequately conceptualized to develop a patient-reported outcome measure. This study sought to extend our knowledge about outcomes from AAC. What this paper adds to the existing knowledge This study adds to the methodological toolkit available for qualitative inquiry in the field of communication disability research by presenting a longitudinal qualitative research methodology. It adds depth to our understanding of the concepts that underpin outcomes from AAC and highlights the dynamic nature of contexts and how this influences desired outcomes. What are the potential or actual clinical implications of this work? This longitudinal qualitative research study provides a broader perspective on the experience of getting AAC. It will enable clinicians to better navigate the contextual and transitionary factors that influence people's experience of acquiring AAC devices. The enhanced concepts described will also support clinical conversations that consider the wider facets of communication and what AAC can add to existing communicative tool kits beyond getting a message across.

The Unspoken Voice: Applying John Shotter's Dialogic Lens to Qualitative Data from People Who have Communication Difficulties.

As speech and language therapists, we explored theories of communication and voice that are familiar to our profession and found them an inadequate basis on which to generate deep and rich analysis of the qualitative data from people who have communication difficulties and who use augmentative and alternative communication. Expanding our conceptual toolkit to include the work of John Shotter allowed us to reconceptualise voice and where it is emergent in dialogue. Reimaging voice will inform clinical and research praxis with people who have communication difficulties as it allows practitioners to attend more closely to the complexity and nuance inherent in interactions with this population. Our proposition is exemplified with excerpts from a single participant who has communication difficulties to illustrate the value of dialogic theory in praxis. This article presents a provocation for the wider academy of qualitative health research; do we have the concepts and tools to develop meaning with people whose lived experiences may also be hard to voice in monologues?

A qualitative evidence synthesis of the experiences and perspectives of communicating using augmentative and alternative communication (AAC).

PURPOSE: This paper presents a review of the existing qualitative research literature concerning people's experience of communicating using augmentative and alternative communication (AAC). The aims of conducting this review were to find out more about the values and outcomes that are important to people about the AAC they use to support their communication. This review was conducted to provide a deeper understanding of these experiences to inform the development of a patient-reported outcome measure (PROM). MATERIALS AND METHODS: A qualitative evidence synthesis of existing qualitative research literature was undertaken to explore and appraise current knowledge about the experiences of people who use AAC. RESULTS: From 115 qualitative research reports 19 papers were identified that responded directly to the research question and aims of the review. Data were identified that could be organized within an a priori framework consisting of the constructs of values, outcomes, and context. CONCLUSION: The review has resulted in a deeper, analytical understanding of the experiences of people who require AAC. The results indicate a set of concepts that can be used to inform the development of a PROM. A PROM can be used to assist clinicians and researchers to better understand the perspectives of people who require AAC and evaluate interventions. The results also encourage professionals to reconsider the terminology and methods used when working alongside people who require AAC and to reflect on the multidimensional factors that influence people's experience of communication.IMPLICATIONS FOR REHABILITATIONPatient-reported outcome measures (PROMs) can be useful tools to support clinician-patient communication, facilitate shared decision making and establish priorities for rehabilitation.It can be difficult to engage people who have complex communication difficulties in decisions about the important outcomes to them from using augmentative and alternative communication (AAC).This qualitative evidence synthesis provides a deeper understanding of the experiences and perspectives of people who use AAC.The results will be used to inform the development of a PROM which can be used to facilitate shared decision-making, and evaluate AAC interventions from the perspective of the people who use these technologies.

Masking care: A qualitative investigation of the impact of face masks on the experience of stroke rehabilitation from the perspective of staff and service users with communication difficulties.

BACKGROUND: Face mask use has become widespread as a means of reducing transmission of severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Research suggests face coverings can impact speech discrimination, therapeutic alliance and the interpretation of non-verbal cues. However, there is little research into the impact of face masks on people with communication difficulties (pwCD) post-stroke. AIMS: To explore the perspectives of service users and staff on a stroke rehabilitation unit in order to understand the impact of staff wearing face masks on the experience of rehabilitation for pwCD. Strategies that might improve the experience of rehabilitation for pwCD were also explored. METHODS & PROCEDURES: Semi-structured interviews and a focus group were conducted with six pwCD and five health professionals (HPs) on a stroke rehabilitation unit. The data were analysed using reflexive thematic analysis. OUTCOMES & RESULTS: Four main interacting themes were identified from the data: (1) face masks as a barrier to effective communication; (2) face masks as a barrier to human connection and therapeutic relationships; (3) the impact of face masks on an individual is influenced by multiple internal and external factors; and (4) there is a need for service provision to evolve to meet pwCD's needs when using face masks. CONCLUSIONS & IMPLICATIONS: Findings shed light on how face masks can act as a barrier for pwCD within the rehabilitative process, and emphasize that each individual with communication difficulties is likely to be affected to a differing extent, as a result of multiple interacting factors. HPs are encouraged to consider the individual holistically, tailor strategies and adapt to each individual's needs. Further research is required to understand how to optimize rehabilitation outcomes when face masks are used. WHAT THIS PAPER ADDS: What is already known on the subject There is evidence face masks can affect speech discrimination, therapeutic alliance and interpretation of non-verbal cues. The existing literature predominantly considers people with hearing impairments, mental health needs or the general public. The potential for face masks to impact pwCD post-stroke is high, given pre-existing communication barriers and evidence of increased social isolation. What this paper adds to existing knowledge This study is the first of its kind to explore how face mask use by HPs impacts the experience of rehabilitation for pwCD post-stroke. The authors consider the need to tailor compensatory strategies to each individual and adapt them to meet service users' needs. What are the potential or actual clinical implications of this work? HPs should monitor closely the impact of face mask use on pwCD with whom they are working, and consider what adaptations to delivery are required. It would be helpful for clinicians to have a discussion with pwCD post-stroke to understand the impact of face mask use on them personally and what strategies they would find most helpful within rehabilitation. Additional training by speech and language therapists on supporting effective communication and successful interaction with pwCD may be indicated in the context of face mask use.

Using nominal group technique to advance power assisted exercise equipment for people with stroke.

BACKGROUND: Power assisted exercise is accessible and acceptable for people with stroke. The potential for technological advancement of the equipment to improve the user experience has been identified. Involvement of end users and service providers in the design of health technologies is essential in determining how said technology is perceived and adopted. This project invited people with stroke and service providers to influence design features and determine machine selection in the preliminary stages of a codesign research programme. AIMS: To capture the perspectives of people with stroke and professionals working with people with stroke about proposed digitalisation of power assisted exercise equipment and select machines for prototype development. METHODS: Nominal group technique was used to capture the perspectives, ideas, preferences and priorities of three stakeholder groups: people with stroke (n = 3, mean age 66 years), rehabilitation professionals (n = 3) and exercise scientists (n = 3). Two questions underpinned the structure of the events; 'What does an assistive exercise machine need to do to allow the person with stroke to engage in exercise?' and 'Which machines would you prioritise for use with People with Stroke?' Attendees were invited to cast votes to indicate their preferred machines. FINDINGS: Synthesis of the data from the NGT identified four domains; software and interface, exercise programme, machine and accessories, setting and service. Three preferred machines from a range of nine were identified through vote counting. CONCLUSION: Nominal group technique directed the selection of machines to be included in the development of the proposed technology. The vision shared by users during the structured discussion shaped the subsequent steps in the design and testing of the new technology. PATIENT AND SERVICE PROVIDER CONTRIBUTION: The opinions and preferences of people with stroke, rehabilitation professionals and exercise scientists were central to key decisions which will shape the digitalisation of power assisted equipment, influence future research and guide implementation of the new technologies.

Seated power assisted exercise machines assist different combinations of movement and can help people with stroke to take part in exercise programmes. Nine seated machines are manufactured in the UK. It was identified that the machines could be improved through development of technology to detect and display the user's physical effort during exercise. The research team successfully applied for funding to design and develop a new programme to display and measure user effort whilst exercising on the equipment. At the outset of the project the research team needed to make decisions about the capabilities of the new technology and select three machines from the range of nine to be prototyped. We used a method called nominal group technique during which end users with stroke, rehabilitation and exercise professionals were invited to structured meetings to share their ideas. At the end of the meetings the groups voted on their preferred machines. The ideas expressed during the meetings were listed and guided the ongoing development of the technology. The importance of a user-friendly interface was emphasised. The three machines which were allocated the most votes across the user groups were selected to be redesigned and developed with the new technology. The involvement of users at the outset of the design project ensured that they directly influenced the selection of machines and features of the new technology. Nominal group technique was an effective way of ensuring that all attendees had the opportunity to share their ideas and perspectives.

Creativity in public involvement: supporting authentic collaboration and inclusive research with seldom heard voices.

BACKGROUND: The role of public involvement (PI) in healthcare research is growing in importance and it is imperative that researchers continuously reflect on how to promote the inclusion of patients and service users in the design and delivery of research. PI offers a mechanism for end-users to be involved planning, executing, and reporting research. Some patient groups, including people who have communication difficulties, may struggle to engage in the methods traditionally employed to promote PI engagement such as questionnaires and focus groups. METHODS: This article describes a longitudinal case-study of a PI group, consisting of people who have communication difficulties, for a patient-reported outcome development project. Creative methods, informed by the participatory design principles of enacting, seeing and doing, were introduced stepwise into seven PI meetings. Data from video and visual minutes were used to evaluate the impact of the methods, following each group. Feedback, in the form of verbal and visual outputs taken directly from group meeting minutes, along with vignettes evidenced the impact of the methods on the project and group members. RESULTS: Creative methods enabled the PI group members to successfully contribute in meetings, to interact dynamically and to engage with the aims and processes of the research project. Their involvement facilitated the development of accessible recruitment materials, informed data analysis and supported the dissemination of project outputs. Employing creative methods also enabled both PI group members and the academic team to reflect on their own roles within the research project and the impact that their active involvement in the PI group has had on their personal development and perspectives on research. CONCLUSION: The impact of using creative methods in PI for this patient-reported outcome measure (PROM) development project improved collaboration and understanding between PI members and the academic team. The authentic engagement of people who have communication difficulties in PI generated a more accessible project in terms of both process and impact. Creativity has applicability beyond people whose communication is non-verbal; it should be harnessed by research teams to identify and breakdown barriers to involvement to develop outcome tools that reflect the diversity of our populations.

Appraising the quality of tools used to record patient-reported outcomes in users of augmentative and alternative communication (AAC): a systematic review.

PURPOSE: People who have complex communication needs (CCN), and who use augmentative and alternative communication (AAC) to help them express themselves, can be difficult to engage in decision making about their healthcare. The purpose of this review was to identify what patient-reported outcome measures (PROMs) have been employed with people who use AAC. Of the tools identified, the review aimed to establish what conceptual frameworks were used and how the reports describe completion of the PROM. METHODS: A systematic literature review was carried out. A pre-defined set of search terms was entered into five main health and education databases. Titles and abstracts were sifted for relevance. Full text papers were screened against inclusion/exclusion criteria. Data pertaining to the type and nature of the PROM used was extracted. Complementary data sources were analysed to construct a narrative synthesis of the papers identified. RESULTS: Within 15 papers that met the review criteria, 25 PROMs were used with people who rely on AAC comprising of 15 separate measures. The conceptual frameworks for 12 of these tools were reported from which 62 items, or concepts being measured, were identified. Following synthesis of these items, 9 conceptual domains and 11 sub-domains were generated. Limited information was available about who completed the PROM nor how much, if any, support they received. CONCLUSIONS: No PROM that has been developed specifically for people who use AAC was identified by this review. Of the tools that have been used with people who use AAC, the concepts measured were broad and varied. The quality of reporting concerning who completed the PROM was limited, undermining the trustworthiness of many of the studies.

Exploring the Perspectives of People Who Use Alternative and Augmentative Communication Aids (AAC).

This paper outlines the clinical doctoral research plan (funded by HEE/NIHR Integrated Clinical Academic Programme) to engage the wide range of people who use alternative and augmentative communication (AAC) to understand the perspectives of users in order to develop a Patient Reported Outcome Measure (PROM) to evaluate equipment and services.