Clinician co-researchers

The first and final authors established and co-led SEA (Supporting Emotions with Aphasia), an Irish interdisciplinary community of practice comprising mostly SLTs, OTs and PSYs. They identified potential clinical co-researchers who were members of this network and/or had presented to the network previously, and who would bring interdisciplinary perspectives across the continuum of aphasia care (i.e., acute, early supported discharge, primary care, charitable sector). The first author subsequently contacted each person, circulated study information and obtained written informed consent between 10–25 March 2022. The clinician co-researchers each brought over 10 years’ experience of working with people with aphasia. They included 2 Senior SLTs working in community and inpatient rehabilitation settings for the Irish health service, Health Service Executive (HSE) (fourth and final authors); a Clinical Psychologist working in a third sector support organisation (second author); a Clinical Specialist Occupational Therapist in Stroke Care (third author) working in Early Supported Discharge (ESD); and a Clinical Neuropsychologist (fifth author), working in stroke care in an acute teaching hospital.

Four online research workshops, each 1.25 hours, were conducted with the clinical co-researchers. Their roles were to agree the scope of aphasia psychological care (APC) for the purpose of the study, reflect upon current service provision, generate principles of ideal APC, consider the utility of a stepped care approach as well as implementation considerations such as stakeholder identification and information needs. The clinician co-researchers also agreed to be co-authors on the present manuscript.

Aphasia PPI contributors

The aphasia PPI contributors comprised 3 working-aged adults (2 women and 1 man) living with post-stroke aphasia for approximately 10–15 years. They were experienced PPI contributors, having worked together with the first author on various research projects relating to optimising support for living well with aphasia in the previous 4–5 years. Indeed, much of this prior research underpinned the rationale for the present study [21,39,50,52–54]. The first author circulated the study information and subsequently met each person to obtain written informed consent between 10–31 March 2022. Subsequently, 4 PPI meetings were convened, each facilitated by the first author. The first 2 were online due to Covid-19 restrictions and lasted 1.5 and 1 hours respectively. This resulted in 1 previous PPI member declining to be involved. The rest were in-person and lasted 3 hours each, including a lunchbreak. Lunch and refreshments were provided, and remuneration was in the form of vouchers. The PPI contributors’ roles were to support the planning of clinician workshops, to discuss, comment and extend the knowledge generated by the clinicians, and to validate the final report and discuss dissemination plan. The contributors were offered but declined co-authorship on this manuscript as they wanted to maintain their anonymity.

Operationalisation of NPT constructs

The focus of the clinician meetings and discussion prompts were underpinned by key domains and constructs from NPT [48]. These were operationalised for the purpose of the study by the first author and were used flexibly to guide knowledge sharing and generation relating to APC in Ireland. An indicative outline of how the NPT constructs guided discussions is in Table 1.

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Table 1. Operationalisation of NPT constructs.

https://doi.org/10.1371/journal.pone.0331427.t001

Sequencing of meetings

The sequencing of meetings is shown in Table 2. At an initial meeting with aphasia PPI contributors, the plan for the clinician meetings was discussed. Two meetings with clinician co-researchers followed, focusing on current service provision, the scope of APC in the project, and principles of ideal APC. Following these, 2 meetings with aphasia PPI contributors provided an update on clinician meetings and opportunities for discussion and comment. The final 2 meetings with clinician co-researchers included a presentation of PPI contributor comments and discussions about stepped care and implementation considerations in Ireland. In a final PPI meeting, discussions spanned a summary of clinician meetings, dissemination planning, and future research. There was full attendance at all meetings.

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Table 2. Sequence and focus of meetings.

https://doi.org/10.1371/journal.pone.0331427.t002

Knowledge generation and synthesis

Two ‘living’ slide decks were created and maintained by the facilitator (first author), 1 per group, including an aphasia-friendly slide deck for the PPI meetings [55]. These outlined the meeting agenda and helped to provide a structure and focus to shape the discussions, to summarise and record all knowledge generated, for example, by incorporating screenshots of miro.com comments to serve as a practical visual representation, and to facilitate inter-group sharing. Specifically, these provided [1] background information on the project and on relevant aphasia literature; [2] discussion prompts relevant to the specific meeting; [3] visual recording of ideas and comments generated in previous meetings; [4] iterative synthesis and summary of knowledge generated in previous meetings; [5] inter-group comments and contributions (e.g., the clinicians were presented with PPI contributions at their third meeting; PPI contributors were presented with an accessible overview of clinicians’ discussions in PPI meetings 2–4). An overview of materials and sample discussion points is in Table 2.

The approach to data generation and synthesis was informed by PLA techniques including listing (i.e., capturing discrete comments and ideas visually on stickies in response to a discussion prompt), and card-sorting (i.e., visually re-organising stickies, for example by combining and/or comparing content) [56]. Adapted PLA techniques have been applied previously including with people with aphasia and clinicians [49,57]. In response to prompt questions (see Table 2 for examples), discussion points were recorded in real-time on stickies (virtually on miro.com for online meetings). The clinicians opted to create their own stickies within a miro.com whiteboard, which was then left ‘open’ for comment for several days, which enabled further reflection and contribution. The aphasia PPI contributors agreed that the facilitator would record their comments on stickies – whether virtually or physically – and then read them back to check accuracy and completeness. At each meeting, the facilitator led the process of grouping stickies with similar or related content, and then created a summary of the content, which would be presented and discussed at the subsequent meeting. The final version of each slide deck was circulated to members of both groups by email.

Although NPT constructs guided the discussion prompts, the knowledge generated through PLA techniques was analysed using an iterative thematic analysis process [58]. The first author led this process, coding all material, with continuous scrutiny and collaborative input from co-authors during meetings and through co-creation of the final report. The analysis was inductive and highly iterative, with themes refined through ongoing discussion.

Initially, NPT informed the development of questions related to clinicians’ sense‑making, their perceptions and experiences on current care (Differentiation, Individual Specification). After each clinician meeting, all contributions and virtual ‘stickies’ were systematically reviewed to identify similarities, differences, and emerging insights. These informed the development of preliminary themes and descriptors capturing patterns of meaning relevant to the research questions.

A summary of these evolving themes, supported by all contributions, was presented at the start of each subsequent meeting, functioning as a de facto data analysis clinic This approach enabled member checking and strengthened trustworthiness [59]. The emerging themes guided further discussion about principles of good care should entail, and the perceived value and differences compared with current practice (Communal Specification and Appraisal).

The knowledge generated through these discussions was again synthesised and thematically organised. Refined themes were subsequently presented to guide dialogue on stepped‑care design and priorities for implementation (Cognitive Participation and Collective Action constructs). Following the second clinician meeting, these evolving themes were also presented to PPI contributors, whose input was incorporated alongside clinician comments to validate findings and inform subsequent meetings.

To enhance reflexivity, the first author maintained detailed notes, documenting emerging interpretations, positionality, and potential biases [60]. A de-identified version of the final clinician slide deck—incorporating all contributions and the outputs of the iterative thematic analysis—is provided in Supplementary S2 File. Feedback from this final stage was thematically summarised, forming the basis of the final reported themes.

The need to improve APC in Ireland

The clinicians identified and reflected on shortcomings with current service provision, including a lack of availability and access to, psychological support; no specialist pathway of aphasia care; a lack of comprehensive data tracking to monitor access to care; and geographical variation in terms of community support teams and ESD. Inconsistency in access to support was also emphasised by PPI contributors. The clinicians perceived a lack of onward referral pathways when discharging patients from hospital, long inpatient rehabilitation waiting lists, and an overly medicalised approach to stroke and brain injury. Finally, they noted a lack of shared conceptual understanding of the purpose and distinct nature of APC among health professionals. They agreed on the need for aphasia health professionals to have appropriate training and opportunities for interdisciplinary working and support.

APC scope in this study

The clinicians agreed APC would span emotional, social and cognitive support for people with acquired, non-progressive aphasia from brain injury onset across the continuum of care. A summary is in Table 3.

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Table 3. Agreed scope of APC in this study.

https://doi.org/10.1371/journal.pone.0331427.t003

APC values and ethos

The clinicians agreed on a need for a shared conceptual understanding of the overall purpose of APC that would underpin policy and practice across all care settings. Equity and consistency of access were emphasised, as well as a need for responsive, flexible timing and self-referral options (“no matter where you live…you are entitled to equality of access to effective therapy”; “service needs to be structured to [sic] flexible enough for service users to use service across stroke care continuum”). These points were echoed in the PPI meetings (“long-term and self-referral good ideas”). One PPI contributor highlighted the non-linear nature of adjustment and how people with aphasia might want professional support in the longer-term (“of all the things that’s really great. You can do courses etc., but if you get stuck and want to ‘back off’ a little, it's a great thing to be able to talk to them about anything – e.g., your speech, your head”).

The clinicians agreed on a need to re-frame the values and focus of care, shifting away from a medical model emphasis on professional input and full clinical recovery, to facilitating wellbeing and health in the context of disability, and normalising and validating distress (“we need to become more comfortable letting people “be” and not always focusing on the “fix“”; “need to begin with the end in mind, living well with aphasia is not a post therapy idea”).

Synergies with the Personal Recovery [61] paradigm were noted. These included conceptualising ‘personal’ recovery as distinct from ‘clinical’ or ‘medical’ recovery; personally defined; and non-linear, in that people may have periods of wellbeing and deterioration across time, with shifting support requirements. Personal recovery may take place within or outside of the context of formal support services; and thus, recognises individuality, autonomy and personhood. The clinicians agreed on a need to reframe an over-emphasis on the importance of ‘services’ and professionals in supporting living well (“more profs not the answer… we are sign-posters not the destination”). This was echoed in PPI meetings (“have to live life as well”). The clinicians noted a more fundamental question about how the conceptualisation of disability underpins service design. Focusing on medical recovery may in fact impede personal recovery and re-engaging with life. The PPI contributors welcomed the need for a conceptual shift towards responsive and individualised support (“they need to learn to sit down and listen to the person…what can I do to help you?”), one which recognises and bolsters the agency and work that people with aphasia do in managing their self-care and adjustment (“lots of things people can be doing to help themselves”).

Finally, there was agreement among both groups that support for families should be embedded into a model of APC, for example, family peer support groups and tailored support for children of people with aphasia. There was acknowledgement that that family support needs may increase over time. Supporting psychological wellbeing in the context of a family unit was perceived as potentially more effective than working with individuals.

A stepped care approach

The clinicians broadly agreed that a stepped care approach to APC had potential to provide timely, responsive care over time; but that further specification on care coordination, referral pathways, and roles would be required to make it work in practice. Importantly, they believed that the ‘shape’ of stepped care should be further examined and conceptually refined. For example, they highlighted a need for a ‘level 0’ to acknowledge the ‘work’ that people do without formal support. Again, this resonated with a Personal Recovery conceptualisation of wellbeing, recognising the inherent heterogeneity and personhood of people both pre- and post- aphasia onset. Further clarity on the structure of stepped care would be required in future implementation initiatives, for example later levels (3 and 4) were perceived as not clearly delineated, with a particular lack of evidence for level 4 interventions. The utility of differentiating levels 2 and 3 was also queried (“I am not sure about the difference …and whether it is helpful to distinguish between them”). The clinicians also noted that some interventions might transcend levels, for example peer-support groups (“Are levels too ‘fixed’? “Groups often work really well when there are guides who have already travelled the path.”).

The clinicians agreed that Level 1 screening should cover cognition, language and mood as an entry point to more detailed assessment and access to later stepped care levels. There was a perceived need for more awareness of the role of SLT in mood screening, assessment and management across multidisciplinary teams.

A range of specific intervention approaches were discussed including ‘first principle’ universal interventions post-brain injury (“fatigue management, activity scheduling, physical exercise, mindfulness, and participation in everyday living”) and standalone approaches for depression including aphasia-accessible Behavioural Activation and Cognitive Behavioural Therapy. At level 1, the clinicians highlighted the importance of initiatives “where people can feel joy and purpose” and to have a choice of low-level interventions. An example given was having access to a schedule of classes and activities, which could be booked on an ad hoc basis. They agreed on the importance of access to aphasia community interventions such as aphasia cafes, as well as self-management and peer support. The PPI contributors also emphasised the importance of meeting others with aphasia for wellbeing and adjustment (“want people with similar experience to help”; “meeting others living with aphasia very important”; “want someone that has same problems at home”). The clinicians recommended that ‘alternative modality’ interventions, such as yoga and creative therapies, should be explored and available at all levels of APC (“creative therapies are often seen as a luxury … rather than core services. Aphasia should turn this perception inside out... if I cannot talk, access to other forms of expression is essential, and talk therapy is peripheral”). The restorative potential of creative therapies resonated strongly with the aphasia group (“creative therapy – great one”; “music always helps with relaxing”; “mindfulness with art…fantastic…arty and quiet”; “can always hear what my mood is through my choice of music”).

The clinicians identified universal design and adaptation of health communication environments as priority areas, noting possible opportunities to embed actions into ongoing health literacy and access initiatives. They also emphasised the importance of care coordination and continuity (“continuity of care is crucial – jumping from one team to another not good”; “there needs to be a case coordinator overseeing the entire model of care”); these were also emphasised by the PPI contributors (great idea to see same person each time – just like doctor knows you”).

Training and support for clinicians

The clinicians agreed that aphasia clinicians should have the opportunity to complete relevant training and to avail of professional supervision and debriefing. Supervision and emotional support for SLTs was felt to be crucial elements of professional self-care, problem-solving, and debriefing about emotionally charged professional encounters. Such support was identified as relatively unavailable, however. Training needs identified included training in psychological strategies for Level 2 interventions such as Cognitive Behavioural Therapy, Behavioural Activation and Motivational Interviewing for non-psychology staff like SLTs; and supported communication education for non-SLTs.

The discussions highlighted the importance of increasing awareness within the multidisciplinary team of the need for SLTs to be involved in mood screening and assessment, and to engage in joint-working and discussions relating to mood with Psychology and OT colleagues. It was also emphasised that there must be recognition of the positive work already being enacted, including by SLTs, who may in fact need reassurance and validation to build confidence in their existing skills and practices (“Need for recognition that SLTS provide amazing emotional, compassionate care … sometimes it’s more reassurance that we are not missing something and confidence in existing skills and practice”).

To enhance referral accuracy and increase timely access to APC and SLT, the clinicians agreed on a need to increase aphasia awareness across the continuum of care, including nursing homes, Psychiatry of Later Life units, General Practice, acute, rehabilitation and community settings. The importance of interdisciplinary training aligned with universal interventions (e.g., in empathic and active listening, supporting adjustment, and supported communication) was emphasised. The PPI contributors agreed on the importance of clinicians understanding the experience of adjustment and living with aphasia (“clinicians have to learn themselves too. They’re in a bubble”; “clinicians have to ‘click’ about aphasia”). They suggested included education sessions with people with aphasia as expert trainers. Interdisciplinary training and co-learning post-qualification was also recommended

Contextual implementation factors

Ensuring that APC service design responds to the Irish context was an agreed priority for the clinicians. This included, for example, developing a deeper understanding of current service provision and initiatives across care levels and settings. The clinicians considered how elements of APC might be integrated into existing service structures to maximise efficiency and cost-effectiveness. Examples given were to understand the level 1 supports currently available (e.g., through Irish Heart Foundation), and to explore the feasibility of establishing a pathway of care spanning multiple agencies across third sector support organisations, social care and community services, and the HSE. There was also agreement that the output of the present study should inform stroke and psychological care policy.

The potential resourcing implications of stepped care were noted by clinicians (“need for a lot more Psychology and Neuropsychology manpower though and I fear therefore is unrealistic maybe”) and PPI contributors (“how can they take on more?”). The clinicians believed that increasing the number of aphasia professionals in isolation would not necessarily provide a solution. Instead, they highlighted a need to review team structures and resourcing to enable better use and coordination of clinicians and health workers involved in APC (“not to be caught up in the “that doesn’t exist … as then nothing will change”). Suggestions included further involvement of rehabilitation assistants, including in the community, protecting specialist resources (e.g., ESD), clarity on the role of stroke liaison support workers, inclusion of an aphasia ‘emotional support’ champion on stroke and brain injury teams, and looking at extending the remit of Home Help services beyond personal care.

The potential for transdisciplinary working for unlocking resources was discussed (“80% of what we offer as professionals could be offered by any other professional on the team”). Such work would necessitate further participatory sessions to develop the ‘shape’ of a national APC model, with wider stakeholder consultation and PPI engagement at all stages from design through implementation. The clinicians highlighted how a new HSE primary care network manager structure may offer further potential for inter- and trans-disciplinary working. These opportunities were felt to be important due to a lack of consistent encouragement and support from health service management structures to work with other professional disciplines (“we need Line Management support to work with other professional disciplines – sometimes not encouraged”).

They additionally emphasised the need to capture valid, clinical, economic and societal outcome data relevant to APC, noting that these data are not routinely collected nor available. This must be underscored by improved political awareness and ‘visibility’ around the need for APC, since invisible needs and impact are hard to quantify.

The clinicians discussed how to raise awareness of the need for enhanced APC to support interest holder investment and buy-in. One clinician noted a need to “get the gravity and seriousness of this need front and centre with the medics and heads of service”. Multi-level parties were identified including policymakers and service commissioners (HSE, including National Clinical Programme for Stroke, National Rehabilitation Programme, Communications, and Quality and Patient Safety offices, Department of Health and Children, third sector support organisations, National Office of Clinical Audit, and Professional bodies); local service provider organisations, relevant care pathways (Enhanced Community Care) and service-level managers; among multi-disciplinary clinicians and support workers (e.g., Clinical Nurse Specialists, Medical Consultants, General Practitioners, Health and Social Care Professionals, key workers, Stroke Support Coordinators); and people living with aphasia, including families and caregivers. The clinicians identified different informational needs across these diverse interest parties and a need to tailor dissemination outputs accordingly. These included a range of formats like academic papers, accessible presentations, animations, policy briefs, position papers endorsed by professional bodies, and conference presentations.

Methodological critique

Every effort was taken to create authentic and inclusive research spaces for each group. All meetings incorporated PLA tools and techniques, which have been used successfully in aphasia PPI research [45,50], and in online co-design sessions with clinicians [49]. Meetings were initially convened online owing to the Covid pandemic; however, this resulted in 1 PPI contributor who was previously involved in research with the first author, opting out of this study. When in-person restrictions were lifted, the PPI contributors elected to meet in person again; this facilitated more engaged meetings, which supported more sustained, richer discussions compared with online meetings. Conversely, the online clinician meetings, necessitated by the pandemic, appeared to enhance efficiency, accessibility, and collaboration among clinicians. Such positives are reported elsewhere [74].

There are several important methodological limitations, and the findings should be appraised accordingly. This study provides some initial ideas generated through participatory research discussions with a small number of aphasia clinicians and PPI contributors. It is likely that these are not comprehensively representative of all services, settings, and experiences. The clinician group predominantly represents senior, specialised roles, whilst underrepresenting frontline primary care providers such as General Practitioners and community nurses. The aphasia group comprised only working-aged individuals living with aphasia for 10 years and longer, thereby excluding those with acute presentations and non-stroke aetiologies of aphasia, also populations with distinct psychological needs. This is particularly salient given that the agreed scope and focus of coordinated APC in this study ideally encompasses non-stroke aetiologies as well. It is important that the insights generated are appraised accordingly and that future research draws on sustained engagement with a wider range of interest holders, including families of people with aphasia, policy makers, and a wider range of key gatekeepers to mental health support in Ireland. Future research should also explore opportunities for combined meetings with the clinician co-researchers, aphasia PPI contributors and other interest holders. Furthermore, future participatory research in this area should give greater analytic weighting to knowledge generated with people with lived experience, in order to address the imbalance in the present study, which drew more heavily on clinician contributions.

In this study, NPT was used as an organising framework to explore APC in Ireland. Harnessing theory enhances research rigour and transferability so that the findings may inform future research in this area [75]. NPT constructs will underpin a future rapid realist review to generate a programme theory articulating context-mechanism-outcome configurations of how APC relating to non-progressive, acquired brain injury is expected to ‘work’ [76]. Component interventions, contextual implementation strategies, and outcome measures (clinical, service and economic) will be identified. This knowledge will be iteratively refined through participatory research with diverse interest holders representing lived experience, research, policy and practice, and used in the design and evaluation of new care pathways.