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. 2024 Apr 17;6:60. Originally published 2023 Oct 10. [Version 2] doi: 10.12688/hrbopenres.13783.2

Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A protocol for a realist review.

Yvonne Fitzmaurice 1,a, Suzanne Beeke 2, Jytte Isaksen 3, Una Cunningham 4, Caroline Jagoe 5,6, Éidín Ní Shé 7, Ruth McMenamin 1,8
PMCID: PMC10879762  PMID: 38384971

Version Changes

Revised. Amendments from Version 1

In response to the reviewers’ feedback we have added additional information, in the introduction, on incorporating PPI in this review including a newly added figure, Figure 1. We have provided further explanation on terminology used with regard to student health and social care professionals and the review’s advisory panel (formerly advisory group). We have also changed some of our terminology to increase clarity for the reader. An additional table has been added (Table 3) to our methods. It provides an overview of the advisory panel including rational for including the specific advisors and their expected roles throughout the review process. Additional detail on how PPI advisors with communication difficulties are supported throughout the review process has also been added to methods. We have relocated our review questions to Step 1 to enhance general understanding of the review process and added additional explanation to two of the review questions to ensure clarity. Finally, we have included additional supporting materials in the extended data to increase transparency of the review process Also please see: Authors’ detailed response to the review by Marina Charalambous Authors’ detailed response to the review by Rachael Rietdjjk Authors’ detailed response to the review by Alexandra Tessier Authors’ detailed response to the review by Ariné Kuyler

Abstract

Background

Stroke acquired communication impairments impede effective communication. Consequently, in stroke care, communicative interactions can be challenging for both patients and staff and can predispose patients to increased risk of preventable adverse events. Communication partner training (CPT) can mitigate such negative outcomes by optimising communicative interactions. Providing CPT to student health and social care professionals (SH&SCPs) has the potential to enhance their clinical expertise and experiences and enhance the future clinical care of patients with stroke acquired communication impairments. This research aims to expand our understanding of how CPT is operationalised for SH&SCPs in higher education institutions and determine: what works; for whom; in what contexts; how and why?

Methods

This review is Phase 1 of a research project employing a realist approach with public and patient involvement (PPI). It incorporates five iterative steps: 1.) Clarifying the scope; 2.) Searching for evidence; 3.) Selecting and appraising evidence; 4.) Data extraction; 5.) Synthesising data and developing a middle range theory explaining how CPT is expected to work for SH&SCPs. An advisory panel, including PPI advisors, content advisors, student advisors, realist advisors and educationalist advisor has been set up to consult throughout the review and collaboratively agree the middle range theory.

Discussion

While there is an evolving evidence base for CPT, including stroke specific CPT for SH&SCPs, it is acknowledged that there are challenges to its implementation in complex real-world settings. In combining empirical evidence with theoretical understanding, realist review permits synthesis of data from diverse sources and goes beyond determining efficacy to explore generative causation and solutions for real world practice. A middle range realist programme theory that coherently explains how CPT is expected to work when teaching SH&SCPs to communicate with people with stroke acquired communication impairments will provide educators with new insights into CPT development and implementation in their higher education institutions.

Keywords: Communication partner training, student health and social care professionals, stroke, aphasia, acquired apraxia of speech, dysarthria, cognitive communication disorder, public and patient involvement

Abbreviations

CPT: Communication partner training; SH&SCPs: Student health and social care professionals; IPT/s: Initial programme theory/theories; C: Context; M: Mechanism; O: Outcome; CMOC: Context, mechanism, outcome configuration; PPI: Public and Patient Involvement; TDF: Theoretical Domains Framework; BCW: Behaviour Change Wheel

Introduction

Stroke acquired communication impairments

In 2019 the global incidence of stroke was reported to be 12.2 million and stroke was reported as the third leading cause of death and disability resulting in 143 million people living with “disability-adjusted life-years" ( Stark et al., 2021, p. 795). Among these life adjusting disabilities are the communication impairments aphasia, dysarthria, apraxia of speech and cognitive communication disorders ( Baker et al., 2022). These impairments (overviewed in Table 1) can occur in isolation or in varying combinations and with varying severities. Their incidence and prevalence will increase in the coming decades in line with the predicted increased incidence of stroke world-wide ( Stark et al., 2021). Specific to the European Union, Wafa et al. (2020) anticipate that the people living with stroke will have increased by 27% between 2017 and 2047. Studies reporting on the specific incidence and prevalence of stroke acquired communication impairments are variable, for example, they differ in geographical origins, number of participants and designs and methods ( Frederick et al., 2022; Mitchell et al., 2021). Hence, there are variations across reports with aphasia impacting 7% to 77%, dysarthria impacting 24% to 69% and a combination of dysarthria and aphasia impacting 4% to 29% ( Ali et al., 2015; De Cock et al., 2020; Dickey et al., 2010; Flowers et al., 2013; Frederick et al., 2022; Mitchell et al., 2021; Stipancic et al., 2019). Data on incidence of stroke acquired apraxia of speech is sparse and challenging to report on given that acquired apraxia of speech rarely exists in isolations but typically co-occurs with aphasia and/or dysarthria ( Duffy, 2020). Regarding cognitive communication disorders associated with acute stroke, Riepe et al. (2004) reported that up to 77% exhibited cognitive impairment.

Table 1. Overview of stroke acquired communication impairments.

Impairment Common clinical manifestations
Aphasia Aphasia can impair an individual’s ability to express themselves; understand what others are
saying or read and write. In mild cases there can be word finding difficulties and difficulty
understanding complex written and/or verbal instructions. In severe cases, it may be difficult
to verbalise, write or understand even single words.
Dysarthria Dysarthria, an umbrella term for a group of speech disorders, reflects abnormalities in
strength, speed, range, steadiness, tone, or accuracy of movements required for speech
production ( Duffy, 2020, p. 3). Intelligibility of speech is impacted. Speech may be imprecise,
slow, monotonous or low in volume. In mild cases an individual may have to occasionally
repeat themselves to be understood. In severe cases speech may be entirely unintelligible.
Acquired Apraxia of
Speech
Typically an individual knows what they want to say, but cannot produce and sequence sounds
correctly in words. Speech can be slow and monotonous with reduced intelligibility. Automatic
speech is better preserved than volitional speech. In mild cases intelligibility may be minimally
impaired. In severe cases an individual may have difficulty producing any sounds or words.
Acquired apraxia of speech rarely occurs in isolation, but co-exists with aphasia or dysarthria.
Cognitive
Communication
Disorder
Cognitive communication difficulties result from impairment to underlying cognitive functions
such as memory, executive function, and attention. They have variable presentations and can
include difficulties turn-taking in conversation; staying on topic; attending to and recalling
specific details and giving information in the correct sequence.

The stroke acquired communication impairments outlined in Table 1 present chronic, multifaceted challenges for the individuals presenting with the impairment/s and for those interacting with them ( Ali et al., 2015; Chang et al., 2018; Mitchell et al., 2021; Wray et al., 2019). They can mask the individual’s inherent competency and result in communicative interactions that are negative for all interlocutors ( Carragher et al., 2020; Kagan et al., 2001; Kagan et al., 2018; van Rijssen et al., 2021). Unsuccessful communication predisposes patients to increased risk of adverse hospital events ( Bartlett et al., 2008; Hemsley et al., 2013); loss of autonomy and exclusion from participation in care related decisions ( Brady et al., 2011; Carragher et al., 2020; O’Halloran et al., 2012). Additionally, there is increased risk of depression and anxiety ( Shehata et al., 2015; Zanella et al., 2023).

When communication with patients is challenging, health and social care professionals (i.e., professionals with formal clinical training, e.g., doctors, nurses, physiotherapists, psychologists) can experience emotions such as frustration, impatience and guilt ( Carragher et al., 2020; Hur & Kang, 2022). Consequently, they can limit their time interacting with people with communication impairments ( Carragher et al., 2020). Student health and social care professionals (SH&SCPs) who may also, in contexts where professional registration is required, be referred to as pre-registration professionals, experience similar emotions. Over the course of their clinical training these students may be exposed to a variety of pedagogies and engage in a range of clinical activities and placements involving people with stroke acquired communication difficulties. Rathiram et al. (2022, p. 5) reported that SH&SCPs felt “emotionally strained, frustrated and helpless” when they could not understand their patients. In order to prevent these negative experiences health and social care professionals and SH&SCPs want to learn how to communicate successfully with people with communication difficulties ( Carragher et al., 2020; Hur & Kang, 2022). Furthermore, people with aphasia believe that training health care professionals in the use of communication strategies is important in enabling them to live successfully with the communication impairment ( Manning et al., 2019). CPT can provide the necessary learning opportunities.

Communication Partner Training (CPT)

CPT is defined by Cruice et al. (2018, p. 1) as an “umbrella term for a complex, behavioural intervention” that has many interacting components that are delivered in flexible ways. It is also described as an environmental intervention ( Simmons-Mackie et al., 2010; Simmons-Mackie et al., 2016) as people around the person with communication impairment/s ( i.e., the communication partners) adjust their behaviour and use communicative strategies and resources to facilitate information exchange ( Simmons-Mackie et al., 2010; Simmons-Mackie et al., 2016). Such strategies and resources may include non-verbal cues such as gesture and pointing; personally relevant communication books and folders; applications on smart devices; writing; visual aids ( e.g., maps, photo diaries) and modified verbal expression ( e.g., slowed rate, using key words and short phrases). CPT can be successfully employed with multiple communication partners including health and social care professionals, SH&SCPs, family members, volunteers and people with communication impairments ( Beeke et al., 2018; Cameron et al., 2018; Forsgren et al., 2017; Isaksen et al., 2023; Kagan et al., 2001; Rayner & Marshall, 2003). Importantly, CPT has the potential to pre-empt communicative challenges for our future frontline staff and enhance future clinical care for patients with stroke acquired communication impairments.

Employing realist review in CPT research

Realist terminology relevant to this realist review and all other phases of this research project is presented in Table 2 below.

Table 2. Explanation of realist terminology employed across all phases of research project.

Concept Explanation
Context (C) “Any condition that triggers and/or modifies the behaviour of a mechanism” in the generation of outcomes
( Duddy & Wong, 2023, p. 3). Contexts may be social, psychological, material, organisational, economic etc. ( http://www.
ramesesproject.org/media/RAMESES_II_Context.pdf).
Mechanisms
(M)
Underlying entities, forces or processes which operate in particular contexts to enact outcomes
( Astbury & Leeuw, 2010). They change the “reasoning and responses” of individuals to enact outcomes ( Dalkin et al., 2015) and are
frequently hidden ( Jagosh, 2019).
Outcome (O) The consequence of the intervention. May be visible, measurable, proximal, distal, intended and/or unintended
( Jagosh et al., 2014).
Context,
mechanism,
outcome
configuration
(CMOC)
A description explaining the relationship between specific context(s), mechanism(s) and outcome(s). ( Duddy & Wong, 2023, p. 3).
Initial
programme
theory (IPT)
IPT/s “set out how and why a class of intervention is thought to ‘work’ to generate the outcome(s) of interest” (The
RAMESES Project ( www.ramesesproject.org) ©2014 p. 4).
May be expressed as “If.., then…” statements or CMOCs.
It may be proven/disproven/amended during the synthesis process.
Middle range
programme
theory
The term “middle –range” is an adjective used to describe the level of abstraction of a theory. At the middle-range
there is abstraction, but the theory is close enough to observable data to be usable and enable empirical testing.
( Merton, 1967; http://www.ramesesproject.org/media/RAMESES_II_Theory_in_realist_evaluation.pdf). It is expressed
as CMOCs.
Programme
theory
An abstracted description and/or diagram that describes what an intervention or family of interventions comprises
and how it is expected to work ( Duddy & Wong, 2023).
Demi-
regularity
“Semi-predictable pattern of occurrences” within data ( Cunningham et al., 2021, p. 4).
Generative
causation
The understanding that hidden mechanisms enact outcomes ( Jagosh, 2019).
Retroduction The reasoning involved in discovering or “unearthing” causal mechanisms ( Jagosh, 2019, p. 364).

Realist review is a systematic, “theory driven, interpretative” approach ( Duddy & Wong, 2023, p. 1; Jagosh et al., 2014, p. 131) that facilitates the synthesis and evaluation of data of diverse methodologies and origins. It focuses on combining empirical evidence with theoretical understanding ( Schick-Makaroff et al., 2016) in programme theory development. As Wong et al. (2012, p. 93) state, the premise underpinning realist review is that a specific intervention or class of interventions “trigger particular mechanisms somewhat differently in different contexts”, hence, as is the case in CPT research, outcomes vary across contexts. During programme theory development context, mechanism and outcome configurations (CMOCs) are employed to coherently explain how and why contextual variables influence intervention outcomes. Ontologically rooted in realism and aligned with Bhaskar’s stratified reality ( Bhaskar, 1997), realist review explores both the visible and hidden forces that generate the outcomes of interest ( Jagosh et al., 2014). From a realist standpoint, a behavioural intervention such as CPT is conceptualised to operate in open systems where the intervention changes the system and the system changes the intervention ( Pawson et al., 2004; Pawson et al., 2005). Realist review aims to address the real world complexity and fluidity of these operating systems by going beyond simply asking if an intervention works and exploring generative causation to determine for whom it works, under what conditions, to what extent, how and why? Employing a realist approach has the potential to enhance existing knowledge and practice in stroke specific CPT for SH&SCPs. It can build on the current evidence base, which is predominantly impairment (aphasia) and context (chronic status) specific ( Simmons-Mackie et al., 2016). It can address persisting theoretical and implementation gaps by explaining the relationship between specific contextual variables and the mechanisms they trigger to enact the reasoning and responses that bring about the intended or unintended outcomes ( Dalkin et al., 2015; Wong et al., 2013).

Research on stroke specific CPT predominantly focuses on Aphasia ( Chang et al., 2018) with an established evidence base underpinning recommendations for use of CPT for people with chronic aphasia ( Simmons-Mackie et al., 2010; Simmons-Mackie et al., 2016). This includes established evidence for use of CPT with medical students ( Legg et al., 2005). However, given that there is a high incidence of varied and co-occurring post stroke impairments across the acute to chronic care continuum, these recommendations, while very essential in the management of aphasia, do not comprehensively address the prevailing clinical realities of health and social care professionals or SH&SCPs working with people post stroke. Chang et al. (2018), surveying CPT practices of 122 Australian speech pathologists found that clinicians implementing CPT in clinical stroke settings adapt aphasia specific CPT programmes for use with the broader array of impairments. Correspondingly, in the literature there is increasing recognition of the need to develop CPT for a broader range of acquired impairments that address clinical reality ( Chang et al., 2018; O’Rourke et al., 2018; Simmons-Mackie et al., 2016; Tessier et al., 2020). Studies addressing CPT for the broader range of stroke acquired communication impairments with SH&SCPs are emerging ( e.g., Baylor et al., 2019; Burns et al., 2017; Forsgren et al., 2017; Mach et al., 2022). While the number of studies is small, they represent an important evolution in CPT development for SH&SCPs and this review aims to build on and potentially enhance this development. In realist review, demi-regularities or “semi-predictable patterns of occurrence” ( Cunningham et al., 2021, p. 4) are explored across interventions and domains (such as health care and education) to uncover “families of mechanisms” ( Pawson, 2002, p. 344) in programme theory development. Adhering to realist philosophy, it is these “families of mechanisms” ( e.g., incentivisation, persuasion) rather than “families of interventions” that trigger change and enact outcomes ( Pawson, 2002, p. 344; Wong et al., 2012, p. 94). By building on current knowledge and uncovering relevant “families of mechanisms”, this review, may enhance and potentially accelerate development and implementation of stroke specific CPT for SH&SCPs in clinical education.

The need to explore an approach to data synthesis that can accommodate all valuable research data is highlighted by Simmons-Mackie et al. (2016). In their updated systematic review, the authors reported on the emergence of studies addressing the efficacy of CPT use with the broader range of stroke acquired communication impairments and a promising new trend of studies, attempting to manage clinical reality and the feasibility of CPT implementation in complex settings. However, all of these studies were rated too low on the American Academy of Neurology levels of evidence ( 2011) for efficacy or effectiveness to provide recommendations for clinical practice. Given that realist review accommodates the synthesis and evaluation of data of diverse methodologies and origins, it can build on existing empirical findings from systematic reviews; overcome the challenge of accommodating all valuable research findings in the final analysis, and provide clinicians and educators with augmented theoretical and practical guidance for the development and implementation of CPT.

The value of theory driven CPT interventions and implementation strategies is increasingly recognised in the literature ( Chang et al., 2018; Cruice et al., 2018; Shrubsole et al., 2023). However, theoretical approaches are not in mainstream use and given the vast array of behaviour change and implementation theories in existence it is a challenge for researchers to select the best fit ( Eccles et al., 2012; Shrubsole et al., 2019). Shrubsole et al. (2019) argue that the potential contribution of different theories is unclear given that they have not been consistently applied to health professional’s behaviour or in this case, we argue, SH&SCPs’ behaviour. Also, as McGowan et al. (2020) point out, selecting only one or a few theories in behaviour change research and intervention puts the researcher at risk of omitting relevant factors. Notably, frameworks such as the Behaviour Change Wheel (BCW) ( Michie et al., 2011) and the Theoretical Domains Framework (TDF) ( Atkins et al., 2017; Cane et al., 2012; Michie et al., 2005), developed from synthesising theories and constructs, are being used more frequently in CPT research and other general research in acquired communication disorders ( Behn et al., 2020; Chang et al., 2018; Johnson et al., 2017; van Rijssen et al., 2021). A realist approach considers existing substantive theories in programme theory formation. Consequently, it has the potential to overcome “best fit” challenges while building on existing theoretical understanding. Also, unlike other theoretical approaches, which can be limited in their ability to address multiple pertinent questions, realist review applies realist logic to answer the necessary range of pertinent questions - what works, for whom, under what conditions, to what extent, how and why? ( Pawson et al., 2004; Wong et al., 2012; Wong et al., 2013). Answering such questions can strengthen current CPT research and practice by explaining “the success, failure” and “mixed fortunes” of this complex intervention ( Wong et al., 2013, p. 1). Importantly, addressing these questions allows us to look beyond determining efficacy to determining necessary solutions for real world practice in higher education institutions. The anticipated outcome of this review, a middle range programme theory (defined in Table 2) ,while abstract, will be close enough to observable data to be usable and enable empirical testing.

Patient and Public Involvement (PPI)

PPI refers to research that is conducted ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them ( https://www.invo.org.uk/). It involves “working in collaboration or partnership with patients, carers, service users or the public” ( https://hseresearch.ie/patient-and-public-involvement-in-research/). They may become “members of the research team, or part of reference groups, involved in key discussions and decisions, sharing their unique knowledge, expertise and perspective” ( Staniszewska et al., 2018, p. 1). Originating from the disability and advocacy movements, it emphasises knowledge sharing between “lay people” and “the professionals” ( McMenamin et al., 2022, p. 31). PPI benefits the research process, the researcher and the PPI contributors and there is increasing expectation for PPI in health and social care research ( Hersh et al., 2021; McMenamin et al., 2022). It improves quality, relevance, impact and integrity of the research process. It promotes waste avoidance and embraces active involvement including shared decision making across the research cycle ( Dawson et al., 2020; Hersh et al., 2021; McMenamin et al., 2022; Staniszewska & Denegri, 2013). It promotes inclusion, validation and understanding of the lived experience ( Pearl & Cruice, 2017; Turk et al., 2017).

Incorporating PPI in realist review

While engagement of experts and stakeholders is commonplace in a realist review ( Saul et al., 2013), the inclusion of PPI is at an evolutionary stage ( Abrams et al., 2021). There is variability in all terms used to describe the realist review’s advisors or contributors and PPI tends to be subsumed into pre-existing structures or groups including “stakeholder, expert or advisory panels” ( Abrams et al., 2021, p. 243). In this review, to support clarification for the reader, we use the term PPI advisor to denote people with stroke acquired communication impairments and their significant others. They, in collaboration with content advisors, relaist advisors, student advisors and an educationalist comprise this realist review’s advisory panel (see methods, Table 3).

Level of PPI advisors’ involvement in this realist review

In general, PPI can occur at different levels (e.g. consultation, defining scope, collaboration) and at different stages (e.g. design, project advisor, dissemination) of a research cycle ( McMenamin et al., 2022). Specific to realist review Abrams et al. (2021) found that PPI contributor roles included informing and developing programme theory and advising over the course of the review. Developing research questions, sourcing literature and data extraction tend to be performed by advisors such as academics or clinicians. These traditional roles are reflected in the level of involvement expected from this review’s advisory panellists (see methods, Table 3). More broadly, across different types of research, there are a range of conceptual models overviewing different levels of involvement and power sharing in PPI, many of which have been influenced by Arnstein’s Ladder of Public Participation (1969) ( McMenamin et al., 2022). In this realist review, we adopt the PPI Spectrum of Involvement in Research Model (IHRF, 2015 https://hrci.ie/about-us/our-work/ppi/). This model, depicted in Figure 1, illustrates that the PPI advisors on this review are involved at a consultative level.

Figure 1. PPI Spectrum of Involvement in Research Model (IHRF, 2015 https://hrci.ie/about-us/our-work/ppi/).

Figure 1.

This figure has been reproduced with permission.

Methods

Aims and objectives

This review protocol overviews a realist review, the first phase of a PhD project. Figure 2 overviews the realist review in the context of the wider project. The wider project aims to employ a realist approach, including realist review (Phase 1) and realist evaluation (Phase 3), in combination with PPI (Phase 1- PPI advisors on review’s advisory panel and Phase 2- PPI Advisory Group). The primary aim of this realist review (Phase 1) is the synthesis of secondary data from varied relevant sources into a plausible and coherent middle range theory. This theory will explain how CPT is expected to work when teaching SH&SCPs to communicate with people with stroke acquired communication impairments. As stated above, the middle range theory developed will be close enough to observable data to be usable and permit empirical testing. It will undergo further appraisal and development during realist evaluation, the third phase of this project, in consultation with the PPI advisors who are consulting across all phases of this project.

Figure 2. Project flow chart.

Figure 2.

A protocol for this review has been registered on PROSPERO on 01/05/2023 (CRD42023418951).

Steps in this realist review

While there are guiding principles around conducting a realist review there is no one prescribed method ( Hunter et al., 2022) and this can result in variability across reviews and lack of clarity on key stages in the review process ( Booth et al., 2019). This protocol aims to present a clear and transparent review process guided by Pawson et al.’s (2005) five key iterative steps in realist review; the Realist And Meta-narrative Evidence Syntheses—Evolving Standards quality and publication standards for realist reviews ( Wong et al., 2013) and a range of protocols, methodological papers and reviews of and recommendations for practice including Booth et al. (2019); Dada et al. (2023); Duddy & Wong (2023); Rycroft-Malone et al. (2012); Saul et al. (2013), and Wong (2018). Also integral to this review is the establishment of an advisory panel to consult over the course of the review and collaboratively agree the finalised middle range programme theory. At this point, the advisory group has been established and Step 1 of the review has been completed. Step 2 is underway. Given that the review process is iterative, overlap across steps and backward forward movement is anticipated throughout the process.

Set up review advisory panel

Duddy and Wong (2023, p. 1) describe realist review as a “flexible, iterative and practical” approach to evidence synthesis that draws on the expertise of a variety of relevant stakeholders. Consequently, when undertaking a realist review a high level and variety of knowledge and expertise is required ( Saul et al., 2013). In order to realise such expertise and knowledge, this review adopted a collaborative model incorporating an advisory panel ( Davies et al., 2019; Shé et al., 2018). The composition of this advisory panel is overviewed in Table 3 with rational for inclusion of the specific advisors and summary of their expected roles. Also, a summary of the advisory panel meetings throughout Step 1 of the realist review is included in extended data.

Table 3. Realist Review Advisory Panel: Composition, inclusion rationale and overview of expected roles.

Composition Rationale for Inclusion Expected Roles
Content advisors (n=4): Academic
researchers in the field of speech and
language therapy. They have specific
expertise in the development and
application of CPT and PPI.
Advisors with content expertise and in-depth
and up to date knowledge of the subject
matter are pivotal to the successful execution
of the realist review ( Ní Shé et al., 2018; Saul et al., 2013).
•   Directing and managing the review
•   Engaging in all steps of the review process
•   Facilitating programme theory development,
review and refinement
•   Co-authoring academic paper
•   Dissemination planning and execution
Realist advisors (n=3): Advisors with
expertise in the realist approach.
Methodological assistance from people
experienced in the realist approach is vital in
the execution of the review ( Duddy & Wong, 2023).
•   Methodological assistance across all steps of
the review
•   Programme theory review and refinement
•   Co-authoring academic paper
•   •Dissemination planning and execution
PPI advisors (n=3): People with
stroke acquired communication
difficulty who are experienced co-
trainers and participants on the CPT
programme at University of Galway
and the spouse of one of these
advisors.
Involving people with the “lived experience” in
research can have multiple benefits including
improved quality, relevance, impact, integrity
and waste avoidance ( Dawson et al., 2020;
Hersh et al., 2021; Staniszewska & Denegri, 2013; Tomlinson et al., 2019).
•   Reviewing and refining the initial programme
theory (Step 1B)
•   Reviewing and refining the extraction
template (Step 4)
•   Reviewing and refining the middle range
programme theory (Step 5)
•   Dissemination planning and execution
Student advisors (n=4):Undergraduate students who
participated on CPT at University of
Galway during the academic years
2022 and 2023.
Involving students, the knowledge users,
enhances the usability of the review products
and strengthens links to practice ( Saul et al., 2013, p. 15)
•Reviewing and refining the initial programme
theory (Step 1B)
•   Reviewing and refining the middle range
programme theory (Step 5)
Medical educationalist (n=1) Professor in medical education. Provides in-depth and up to date knowledge from an educational perspective. •   Reviewing and refining the initial programme theory (Step 1B)
•   Reviewing and refining the middle range programme theory (Step 5)

Enabling active involvement of PPI advisors in realist review

In order to ensure the PPI advisors, especially those with communication impairments, engage actively and authentically on this advisory panel it is important to adapt a flexible and facilitative approach ( McMenamin et al., 2022). Successfully negotiating complexity, such as realist theory development and refinement, with people with stroke acquired communication impairments, requires careful consideration and accommodations ( Hersh et al., 2021). In this project the PhD candidate YF, is an experienced speech and language therapist who has worked with people with acquired communication difficulties for over 30 years. This according to Cascella & Aliotta (2014) renders her uniquely skilled in facilitating inclusive communicative interactions with people with acquired communication impairments. Annually, YF, RMcM and both PPI advisors with communication impairments co-deliver CPT to student speech and language therapists at the University of Galway. All are experienced in using supportive communication techniques and strategies to ensure active and reciprocal involvement during the training module. These communicative supports, tailored to the needs of each individual PPI advisor (one presenting with mild expressive aphasia and one with severe expressive aphasia and severe apraxia of speech), are being employed across this realist review to ensure understanding of the review process; clarity around the commitment and work required; active collaboration, and that there is shared understanding among the researchers and the PPI advisors. Ensuring there is comprehensive, shared understanding of the collaborative process aligns with Abrams and colleagues’ series of prompts for researchers and PPI contributors engaging in realist reviews ( https://www.spcr.nihr.ac.uk/news/blog/the-role-or-not-of-patients-and-thepublic-in-realist-reviews), and with McMenamin et al. (2021, p. 17) “Top Tips” for researchers including people with aphasia in research. Examples of these tips and prompts include:

• Clarifying the point of the research and whom it will benefit

• Clarifying the PPI advisors expected time and work commitments

• Clarifying language demands e.g., how much reading would be required

• Building Relationships and ensuring there is equality and trust and people with aphasia are facilitated to engage actively and authentically

• Adopting an inclusive tone and ethos

• Identifying the most appropriate communication channels for use during the review

Specific examples of supportive strategy, employed in this review for PPI advisors with communication impairments, include:

• PPI Advisor 1 – Presenting information pictorially and in short written phrases (See sample in extended data); giving extra time to process information; supplementing conversation and verbal questions and instructions with written words and symbols; facilitating the use of a variety of non-verbal modes of communication including a communication folder, smart phone and tablet.

• PPI Advisor 2 - giving extra time to process verbal and written information, presenting verbal questions and instructions “one at a time”.

Time was also dedicated to the third advisor, the spouse of contributor 1, to ensure there was shared understanding of what engaging in the review entailed. She was provided with written information and engaged in discussion around the requirements of the project.

With regard to adopting a flexible approach, it was collaboratively agreed by YF and PPI advisors that meetings should be face to face and conducted separately with the the single advisor and the dyad (person with communication impairments and his significant other). This was due to their significantly different communication impairments and supportive requirements and to facilitate optimal use of everyone’s time.

Step 1

A. Clarify scope

The review questions were conceptualised by the content advisors and refined in consultation with the realist advisors. The questions aim to address shortcomings in the current knowledge base and facilitate realist enquiry. In order to determine how SH&SCPs learn to communicate optimally with people with stroke acquired communication impairments, we posed the following questions:

• What CPT interventions are used for SH&SCPs in higher education institutions?

• What are the desired, achievable outcomes of CPT in higher education institutions?

• For whom do these interventions work (or not) (e.g., which SH&SCPs and at what stage of their training; do they benefit people with stroke acquired communication difficulties participating as co-trainers or communication partners)

• What contexts (e.g., organisational, pedagogical, psychosocial) are enabling/inhibitory?

• How do these interventions work (what mechanisms are enabled in specific contexts to operationalise desired/undesired/unexpected outcomes)?

B. Articulate key theories to be explored

Concurrent with question refinement was initial programme theory (IPT) development. This is a fundamental, early step in a realist review ( Pawson et al., 2004; Wong, 2018). Our IPTs set out how CPT for SH&SCPs is thought to work. They will be subject to testing and refinement in the subsequent synthesis process of this review. Figure 3 overviews the IPTs development process.

Figure 3. IPT development process.

Figure 3.

Preliminary IPTs were developed by content advisors, guided by their insights into CPT, their knowledge of literature on the topic, and an additional literature scoping exercise (see extended data). YF formulated initial theories in the form of “If.., then…” statements. These were modified and refined iteratively over a five-month period in consultation with the other content advisors. This process generated nine “if.., then…” statements which were presented in context, mechanism, outcome configurations (CMOCs). In consultation with the realist advisors the CMOCs were developed further and amalgamated into a graphically presented, overarching IPT. This overarching graphic was additionally reviewed by a medical educationalist. Narrative and graphic IPTs were then presented to student advisors and PPI advisors for review and revision. Final revisions were agreed in consultation with content and realist advisors (see extended data). Narrative IPTs are presented in Table 4. Figure 4, graphically presents the amalgamated IPT, theorising how SH&SCPs can progress to being positive, productive communication partners, or not, and the reasoning and responses enacted along the way.

Figure 4. Graphic representation of integrated IPT for Stroke specific CPT for SH&SCPs.

Figure 4.

Table 4. Narrative presentation of IPTs for stroke specific CPT for SH&SCPs.

Context Mechanism Outcome
IF THEN AND
1.   There is embedded support for the
biopsychosocial model of disability in
department/ school/organisation
Educators:
•   Are motivated to promote learning on medical and social
models of disability
•   Recognise the value of active participation of people with
stroke acquired communication difficulties in health care
and society
•   Recognise the inherent competency of people with stroke
acquired communication difficulties
•   Appreciate the need to develop students’ abilities to use
supportive communication techniques and strategies
when communicating with people with stroke acquired
communication difficulties
Educators:
•   Desire to accommodate comprehensive CPT
underpinned by social model of disability in curriculum
•   Given resource limitations there is a willingness to
implement “condense” version of CPT, which includes
perceived fundamental programme elements, into
curriculum (e.g., lecture on communication impairment
and supportive communication strategies and
techniques).
2.   There is a commitment to inter-professional
learning
•   There is integration of knowledge and skills
•   Educators appreciate the inherent value of collaborative
teaching and learning opportunities
•   Willingness to collaborate across disciplines to explore
CPT development
3.   SH&SCPs receive “condensed” CPT with
perceived fundamental elements included
SH&SCPs:
•   Develop fundamental insights into the nature of
communication disorders and generic strategies for
supporting communication with people with stroke
acquired communication difficulties
•   Feel confidence in their knowledge of communication
disorders
•   Perceive that communicating with people with stroke
acquired communication impairments will be less difficult
SH&SCPs:
•   Demonstrate increased willingness to communicate with
people with stroke acquired communication difficulties
•   Anticipate success communicating with people with
stroke acquired communication difficulties
•   Experience variable communication success with people
with stroke acquired communication difficulties
•   Experience variable emotions, both positive (e.g.,
satisfaction, sense of achievement) and off putting (e.g.,
frustration, guilt) interacting with people with stroke
acquired communication impairments
•   Develop some insights into effective strategy use with
people with stroke acquired communication impairments
•   Experience increased confidence around communicating
with people with stroke acquired communication
impairments
4.   Teaching on communication impairment
prioritises the social model of disability and:
•   4a. Emphasises the impact of
communication on activity and participation









•   4b. Promotes activity and participation of
people with stroke acquired communication
impairments


SH&SCPs develop:
•   Informed insights into the functions and importance of
conversation in daily life
•   An appreciation of the significant impact impaired
conversation skills can have on a person’s life
•   A desire to facilitate better conversations for people with
stroke acquired communication impairments / no desire
to facilitate better conversations for people with stroke
acquired communication impairments due to recognition of
effort required


SH&SCPs:
•   Will conceptualise/ reconceptualise conversation and the
impact of communication impairment
•   Will be willing/unwilling to invest effort in developing
supportive communication skills given their appreciation of
the effort required
•   Demonstrate increased willingness to engage /avoid
engaging in communicative interactions with people with
stroke acquired communication impairments
SHCPs will:
•   Develop critical awareness around identification of target
behaviours/strategies and accommodating to the needs of
people with stroke acquired communication impairments
•   Appreciate that communication is a shared responsibility,
collaborative and co-constructed
•   Appreciate the need to use adaptive strategies and avoid
maladaptive strategies when communicating with people
with stroke acquired communication impairments
•   Appreciate the effort required on behalf of the
communication partner to assist people with stroke
acquired communication impairment reveal their
competency
•   Recognise of the inherent competency of the people with
stroke acquired communication difficulties
•   Realise that the communication partner has an essential
role in helping reveal this competency
SHCPs:
•   Will be able to identify the most appropriate strategies
and techniques to use with people with stroke acquired
communication difficulties to optimise communication
•   Will be willing to continue to learn how to employ
strategies and techniques to improve their communication
with people with stroke acquired communication
impairments in their daily practice and embrace
communicating directly with people with stroke acquired
communication impairments
•   Will be unwilling to continue to learn how to employ
strategies and techniques to improve their communication
with people with stroke acquired communication
impairments in their daily practice (due to perceived effort
and challenges) and select to communicate with significant
others/staff.
•   View people with stroke acquired communication
impairments as inherently competent
5.   There is embedded support for equality,
diversity and inclusion
SH&SCPs will:
•   Develop awareness around disability & equality;
representations of disability in society;
•   Develop understanding of the insider experience
•   Desire to monitor attitudes, language and behaviours
•   Develop informed insights into and awareness of how
disability is represented and viewed in society
•   Appreciate the need to adapt their attitudes/practices
SH&SCPs will:
•   Conceptualise/reconceptualise how disability is viewed in
society
•   Endeavour to adapt/modify their attitudes and practices
including their attitudes to and practices with people with
stroke acquired communication difficulties
•   Demonstrate willingness to learn to become a
communication partner

6a.   Opportunity for structured, adequately
challengingly practical application








6b. Opportunity for guided reflection on one’s
own behaviour and the behaviours of
others
SH&SCPs:
•   Develop competence through active experimentation and
practice
•   Develop critical insights into effective use of techniques and
strategies
•   Feel confident in their developing skill set
•   Believe that it is the communication partner’s responsibility
to make conversation work
•   Develop increasingly positive attitude towards using
supportive communication techniques and strategies
SH&SCPS will:
•   Demonstrate skilled, informed & varied use of supportive
communication techniques
•   Have positive experiences communicating with people
with stroke acquired communication difficulties
•   Understand how to change own behaviour to optimise
communication with people with stroke acquired
communication difficulties
•   Understand that the communication partner is vital to
revealing competence of people with stroke acquired
communication difficulties
•   Reflective observation of adaptive and maladaptive
behaviours and communicative behaviours andattitudes
•   Abstract conceptualisation giving rise to new ideas/
modification of existing concepts
•   New concepts/modification existing concepts (e.g.,
around inherent competency of people with stroke
acquired communication difficulties; communication as
a shared responsibility; societal view of disability; use of
supportive communication)
7.   Focus on rights and autonomy of people
with stroke acquired communication
impairments in health care practice
SH&CPs will:
•   Recognise the right to and value of client centre care (CCC)
•   Recognise the need to be competent in use of supportive
communication techniques to ensure CCC for people with
stroke acquired communication difficulties
SH&SCPS will:
•   Be willing to engage in CPT
•   Commit to using supportive communication for people
with stroke acquired communication difficulties in
facilitating CCC
8.   People with stroke acquired communication
impairments are engaged as co-trainers
assisting in the delivery of the CPT
•   There is reciprocity/mutual exchange of privileges between
SH&SCPs trainers with stroke acquired communication
difficulties and SH&SCPs
•   SH&SCPs develop insights into the lived experience
•   There is acknowledgement of expertise of people with
stroke acquired communication difficulties
•   People with stroke acquired communication impairments
believe in the value of training
•   SH&SCP have opportunity for practice and deep learning
•   SH&SCPs will become empathetic, skilled communication
partners
•   People with stroke acquired communication impairments
feel valued as they are contributing to service
development and enhancement
•   People with stroke acquired communication impairments
experience positive feelings such as pride and wellbeing
in helping others and improving services
9.   People with stroke acquired communication
difficulties participate in CPT as
communication partners & / or as co-trainers
•   People with stroke acquired communication difficulties
experience positive social participation
People with stroke acquired communication difficulties:
•   Have the opportunity to meet people
•   Practice speaking with unfamiliar person/s
•   Developed increased confidence in their communication
abilities
•   Experience decreased feelings of marginalisation

Step 2 Search for evidence

This review aims to include a variety of articles and documents that address the review questions and can contribute to programme theory development and refinement ( Davies et al., 2018; Luetsch et al., 2020). In line with the realist approach this search for relevant articles and documents will be iterative and conducted in collaboration with a research services librarian. The search progression will be responsive to emergent data and developing understanding and insight ( Booth et al., 2019; The RAMESES Quality Standards for Realist Synthesis, The RAMESES Project ( www.ramesesproject.org) ©2014). A concept-based search strategy, devised by YF in collaboration with the research services librarian and content experts, will direct an initial pilot search and data extraction (see Table 5). The search strategy will subsequently be refined iteratively and collaboratively with the advisory group. The searches will include peer reviewed journals, international best practice statements and clinical guidelines and conference proceedings. The following electronic data bases will be searched: Medline, EMBASE, CINAHL, APAPsycINFO and Web of Science. As outlined in our review protocol registered on PROSPERO (CRD42023418951), building from previous reviews ( Simmons-Mackie et al., 2010; Simmons-Mackie et al., 2016; Tessier et al., 2020) searches of peer reviewed literature will be limited to the English language and by date – from January 2019 to the time of the review. Relevant studies in the previous reviews will be included for analysis. Supplementary searches will include hand searches of reference lists, and requests for unpublished studies/programmes from key authors. Search alerts will be in place to identify studies relevant for inclusion prior to final analysis.

Table 5. Preliminary concept-based search.

Concept 1 Concept 2 Concept 3
conversation partner training
OR
communication partner training
OR
communication strategies
OR
inclusive communication
OR
communication access
OR
supportive communication
OR
communication skills
AND Aphasia
OR
Stroke
OR
Dysarthria
OR
cognitive communication disorder
OR
apraxia of speech
OR
augmentative communication
OR
assistive communication
OR
communication disorder
OR
Right hemisphere language disorder
AND Nurse
OR
Doctor
OR
Medic
OR
Speech and language therapist
OR
Speech pathologist
OR
Physiotherapist
OR
Occupational therapist
OR
Psychologist
OR
Podiatrist
OR
Student
OR
health care professional
OR
Assistant
OR
patient provider
OR
Rehabilitation
OR
Allied health
OR
health care

Step 3 Select and appraise evidence

YF will perform the Title/Abstract screening and select documents consistent with preliminary inclusion criteria, that is, CPT for health and social care professionals or SH&SCPs addressing stroke acquired communication impairments. A random 20% selection will be reviewed by RMcM. Potential disagreements will be resolved through discussion and consensus of a third author as required. Endnote 20 will be the reference management system used and Covidence 2.0 systematic review software will be used to screen titles and abstracts.

In realist reviews, inclusion of data is determined by their ability to assist in the development and refinement of programme theory or theories. Hence, multiple and varied data sources are considered for inclusion ( Wong, 2018). Applying quality scales or tools to such data sources risks excluding data that are essential for programme theory development. Therefore, in line with Price et al. (2021) in their realist review on remediating doctors’ performance to restore patient safety, formal quality appraisal tools will not be used in this review, on the basis that they are not sensitive to how data within papers contribute to programme theory development. Also, specific to CPT research, the application of quality scales has previously highlighted variable methodological quality of studies ( Cherney et al., 2013; Simmons-Mackie et al., 2016). Simmons-Mackie et al. (2016) recommend that the purpose of the study must also be considered when assessing its value and Pawson et al. (2005, p. 24) recommend that when undertaking a realist review judgement around “fitness for purpose” needs to be made.

In accordance with The RAMESES Quality Standards for Realist Synthesis The RAMESES Project ( www.ramesesproject.org) ©2014; Booth et al. (2013); Wong (2018), and Dada et al. (2023) any section of a document included in this review will be appraised for:

  • Relevance

  • Rigour, including plausibility, coherence, trustworthiness

  • Richness

Adhering to the above standards and recommendations bespoke appraisal tools are being devised for this review. Key concepts are synopsised in Figure 5.

Figure 5. Synopsis of key concepts for appraisal of relevance, richness and rigour (adapted from Wong, 2018; Dada et al., 2022 and Dada et al., 2023).

Figure 5.

Step 4 Extract the data

The RAMESES Quality Standards for Realist Synthesis (The RAMESES Project ( www.ramesesproject.org) ©2014, p.7) advises that the data extraction process be continually refined over the course of the review in line with evolution of programme theory and focusing of review questions. Consequently, as Pawson et al. (2004, p. 23) had previously highlighted, data extraction in realist review is a process “without an exact equivalent”. A preliminary data extraction template has been devised and includes study, participant and intervention characteristics, outcome measures and outcomes, contexts, mechanisms of action and underpinning theories. For analogous purposes the domains of the substantive theoretical framework the TDF ( Atkins et al., 2017) and COM-B elements of the BCW ( Michie et al., 2011) are included in the extraction template. This template will be amended as indicated following the pilot searching, and iteratively thereafter in line with evolving insights and understanding. Once coded with respect to richness, relevance and rigour sufficiently rigorous data will be prioritised and assigned conceptual labels relating to CMOCs or components thereof. Less rigorous data will also be interrogated and undergo a triangulation process prior to contributing to programme theory refinement.

Step 5 Analyse and synthesise data

Data synthesis centres on programme theory refinement ( Hunter et al., 2022; Pawson et al., 2005; Rycroft-Malone et al., 2012). Once thoroughly familiar with the extracted data sets, interpretations and judgements will be made around:

  • Partial or complete CMOC of included data

  • How these data impact the refinement of the initial CMOCs developed in Step 1 and their development into middle range theory

  • Whether further searching is required in response to developing insights and understanding

The following analytical process adapted from Pawson (2013) by Papoutsi et al. (2018, p. 16) will inform analysis and judgement throughout the synthesis process:

  • Juxtaposition of data sources through comparing and contrasting data across documents

  • Reconciliation of contradictory or differing data through further analysis, investigation and explanation.

  • Consolidation of evidence sources where adjudications around demi-regularities can be made.

Matrices will be devised to facilitate this analysis. Analysis, judgement and synthesis will be a collaborative and iterative group process, see Figure 6. Throughout this process uncertainties will be resolved through discussion, debate and group consensus.

Figure 6. Group analysis, judgement and synthesis process.

Figure 6.

Study status

As outlined in Figure 2, this realist review comprises the first step of this project. Step one of the review has been completed and step two is underway.

Plan for dissemination

This protocol will be submitted for publication to a peer-reviewed publishing platform. The findings of the completed review will be presented in a second article, adhering to the RAMESES publication standards for realist synthesis, and submitted for publication to a peer-reviewed journal. Also, following consultation with the advisory panel other relevant platforms including conferences, workshops, media platforms, and special interest groups will be explored for dissemination.

Ethical approval

Ethical approval is not required for this review. No data will be collected from the advisory panel.

Discussion and conclusion

This protocol provides an argument for using a realist approach, in conjunction with PPI, to enhance stroke specific CPT development and implementation for SH&SCPs in higher education institutions. It specifically details the first phase of this project – the realist review. People with stroke acquired communication impairments, often excluded from research that requires active participation, are consulting as members of the review’s advisory panel to improve the quality, relevance and impact of the review. They will continue to consult as PPI advisors across all phases of the project.

While research into CPT addressing the broad range of stroke acquired communication impairments is evolving, there are limited implementation guidelines and recommendations to direct practice. Aligned with this is the need to address “real world” realities and challenges in implementing complex interventions in complex clinical and educational settings. Realist review adds to existing knowledge and confronts these “real world” challenges by evaluating CPT from a theoretical and explanatory view point. In the development of a middle range programme theory it aims to coherently explain how the intervention is expected to work. While traditional systematic reviews look at what works and effect size, realist review explores generative causation in theory building and asks a much broader range of questions including who does it work for, under what conditions and how? Unlike existing systematic reviews realist review permits the synthesis of relevant and valuable data from diverse sources and methodologies. Including such varied, valuable data in the production of a middle range theory may provide educators with new and essential theoretical and practical guidance in the development and implementation of CPT programmes, tailored to their desired outcomes for a range of SH&SCPs. The middle range theory developed during this review process will undergo further analysis and development in a subsequent realist evaluation.

Acknowledgements

The authors would like to gratefully acknowledge the contribution of our PPI and student advisors to this review process. Also we are grateful for the support of the Further Education Policy (FEP) Group for University of Galway Staff; the PPI Ignite network and The PPI Ignite Network @ University of Galway.

Funding Statement

Health Research Board Ireland [PPI-2021-001]. This work was also supported by the Further Education Policy at the University of Galway, Ireland.

The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.

[version 2; peer review: 3 approved, 1 approved with reservations]

Data availability

Extended data

Zenodo: Additional Supporting Data: Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A protocol for a realist review. http://dx.doi.org/10.5281/zenodo.10850179

The following supporting data is included:

  • Materials included in scoping exercise in development of initial programme theories

  • Sample of adapted explanatory materials for PPI advisor with severe aphasia

  • Summary of advisory panel meetings throughout Step 1 of realist review

Data are available under the terms of the Creative Commons Attribution 4.0 International license

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HRB Open Res. 2024 Jun 8. doi: 10.21956/hrbopenres.15223.r39250

Reviewer response for version 2

Alexandra Tessier 1,2

I finally reviewed the article again. I agree to move the status of my revision to “Approved

Is the study design appropriate for the research question?

Yes

Is the rationale for, and objectives of, the study clearly described?

Yes

Are sufficient details of the methods provided to allow replication by others?

Yes

Are the datasets clearly presented in a useable and accessible format?

Not applicable

Reviewer Expertise:

Communication partner training, communication  disabilities, environmental interventions, transportation, workplace training, participatory research

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

HRB Open Res. 2024 May 24. doi: 10.21956/hrbopenres.15223.r39247

Reviewer response for version 2

Marina Charalambous 1

Thank you for thoroughly addressing all my comments, and I wish you the best of luck in the next phases of your study.

Is the study design appropriate for the research question?

Yes

Is the rationale for, and objectives of, the study clearly described?

Yes

Are sufficient details of the methods provided to allow replication by others?

Partly

Are the datasets clearly presented in a useable and accessible format?

Yes

Reviewer Expertise:

Patient and Public Involvement (PPI) in stroke and aphasia research

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

HRB Open Res. 2024 Mar 4. doi: 10.21956/hrbopenres.15077.r37741

Reviewer response for version 1

Alexandra Tessier 1,2

First of all, thank you for the opportunity to review this protocol, which describes an ambitious and impressive project. Specifically, this protocol describes how the authors, using a realist review methodology, will develop a middle-range theory to explain the functional mechanisms of CPT offered to student health and care professionals in an academic context. This project addresses the needs of settings for the real implementation of CPT and aims to fill gaps in the scientific literature on CPT offered to student health and care professionals. It seems important for realizing an inclusive society, providing quality care, and advancing scientific knowledge on CPT to explain how to implement this intervention in real life. The presence of an advisory board, including individuals with experiential knowledge, is a notable strength of the study that contributes to ensuring its rigor and relevance for all. I look forward to reading the results of this realist review.

Introduction

The rationale justifies clearly and convincingly the relevance of conducting the proposed research project. The literature review is exhaustive and is supported by relevant sources in the field. I particularly appreciated that the authors explained the realist review methodology in sufficient detail in the introduction, as it is a methodology that I was not familiar with. This study addresses clinical and scientific needs to identify realistic ways to implement CPT in different settings (here for student health and social care professionals). I noticed a few typos that could be corrected:

  • Table 1 → Aphasia → spelling mistake "it may be difficult to verbalize" and not "difficulty".

  • Introduction, third paragraph, please introduce abbreviation Sh&SCP after the first time you fully write it (line 3 of the 3rd paragraph)

Methods

The study design is appropriate for the research question and the methodology is described in detail. I particularly appreciated the numerous methodological references that the authors draw upon and the figures summarizing the processes and results that the team has obtained so far. However, I must mention again that I am not familiar with the realist review methodology. Therefore, I am not able to judge if important points in explaining the methodology are missing. Nevertheless, in my opinion, the methodology is sufficiently detailed and referenced to allow replication based on the protocol and the studies cited.

 I have some questions and suggestions for clarification for the methodology section of the protocol:

  • Research question 4 (For whom…), in the examples, when you say "people with communication difficulties", what do you mean? Like, with what types of communication difficulties do CPT have effects? Or what type(s) of communication difficulties are addressed in CPT? It's not quite clear to me what this example evokes here.

  • In the paragraph where supported conversation is mentioned to support the participation of people with communication disability on the advisory board: what are the "top tips" that you adhere to (McMenamin et al., 2021)? Since I am not familiar with the article in question, I would have appreciated a summary of what it specifically entails.

  • I wonder if the research questions presented in the second part of the method should rather be presented under "step 1". That way, we would know upfront who developed the questions and their objectives before reading them. I don't think it would impair my understanding of the method if it were moved down, and it would thus follow the chronological order of the process in the presentation, which I believe would aid in the general understanding of the methodology.

  • Table 4. In concept 2, could it be relevant to add to the search strategy "communication disability*" and "communication impairment*"?

Is the study design appropriate for the research question?

Yes

Is the rationale for, and objectives of, the study clearly described?

Yes

Are sufficient details of the methods provided to allow replication by others?

Yes

Are the datasets clearly presented in a useable and accessible format?

Not applicable

Reviewer Expertise:

Communication partner training, communication  disabilities, environmental interventions, transportation, workplace training, participatory research

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

HRB Open Res. 2024 Mar 21.
Yvonne Fitzmaurice 1

Dr Tessier, thank you for taking the time to review out protocol. We very much appreciate your encouraging comments, the questions you have posed and the recommendations you have made. We have made some amendments to our protocol, in response to your and three other reviewers’ recommendations. Additionally, we have addressed all of your suggestions and queries below.

Introduction

I noticed a few typos that could be corrected: Table 1 → Aphasia → spelling mistake "it may be difficult to verbalize" and not "difficulty".

Thank you, this typo has been corrected.

Introduction, third paragraph, please introduce abbreviation Sh&SCP after the first time you fully write it (line 3 of the 3rd paragraph)

Thank you, we have included this amendment.

Methods

I have some questions and suggestions for clarification for the methodology section of the protocol: Research question 4 (For whom…), in the examples, when you say "people with communication difficulties", what do you mean? Like, with what types of communication difficulties do CPT have effects? Or what type(s) of communication difficulties are addressed in CPT? It's not quite clear to me what this example evokes here.

Thank you for this question. We mean people with stroke acquired communication difficulties participating as co-trainers or communication partners. We want to explore if CPT works for them (and in our final question we want to explore how it works for them). For example, are the outcomes hypothesised in CMOC 9 realized? Do they develop increased confidence in their communication abilities; do they have the opportunity to meet people; do they practice speaking with unfamiliar people; do they experience decreased feelings of marginalisation?

We have amended our question in response to your query to increase clarity.

In the paragraph where supported conversation is mentioned to support the participation of people with communication disability on the advisory board: what are the "top tips" that you adhere to (McMenamin et al., 2021)? Since I am not familiar with the article in question, I would have appreciated a summary of what it specifically entails.

Thank you for this suggestion. Example of what the tips entail have been added.

I wonder if the research questions presented in the second part of the method should rather be presented under "step 1". That way, we would know upfront who developed the questions and their objectives before reading them. I don't think it would impair my understanding of the method if it were moved down, and it would thus follow the chronological order of the process in the presentation, which I believe would aid in the general understanding of the methodology.

Questions have been moved to Step 1.

Table 4. In concept 2, could it be relevant to add to the search strategy "communication disability*" and "communication impairment*"

Thank you for your suggestion. When developing our search strategy, we were assisted by a specialist librarian and trialled several terms and combinations of terms before settling on our final concepts. We are happy that the search has returned very relevant articles and are currently at the data extraction and analysis and synthesis steps of the review.

HRB Open Res. 2024 Feb 20. doi: 10.21956/hrbopenres.15077.r37743

Reviewer response for version 1

Rachael Rietdijk 1

The authors have outlined a comprehensive plan for conducting a realist review on the important topic of communication partner training for student health and social care professionals. The paper integrates references to a large body of relevant literature to support the development of a compelling case for the review. I offer the following points of feedback which may assist to improve the clarity of the paper:

Title and abstract: Consider including the word "protocol" in the title and when describing the methods. For example, the title could state, "A protocol for a realist review". This change would help to set the reader's expectations for the content of the paper.

Introduction: The introduction provides a clear overview of communication impairments after stroke and communication partner training. The introduction to the approach of realist review is reasonably clear to me as a reader who is not familiar with this area. Could the authors support their explanation with an illustrative example of how this approach has been used in a similar field? A definition of the term "middle range theory" would also be useful to add to the text in this section. I would also suggest moving Table 2 to be referenced in this section of the introduction, as these definitions will be helpful to readers unfamiliar with this topic.

Methods: The research questions are clearly articulated, and methods are well described and rationalised. I noted the following queries regarding this section:

- Aims and objectives: Figure 1 clearly outlines the phases and steps of the project, but this could be described more clearly in the text. For example, the first phase and third phase of the project are defined in the text, but the second and fourth phases are not mentioned. The reference to Figure 1 could also be moved to this section.

- Questions: Could you provide some examples of "contexts" (in the same way that you have given some examples of what is meant by "whom" in the previous question.)

- Review advisory group: I was interested in a little more information on how the advisory group works (e.g., How often does the group meet? In-person or online? Are all members present at all meetings, or are there smaller sub-groups which meet to discuss specific issues? Are there any reimbursement arrangements in place?). I was also interested to know if all the student advisors all from an SLT program, or are they from other backgrounds?

Step 1: Table 3 is well presented and illustrates the IPT concepts well. I had more difficulty following Figure 3. Could you share more about the process that lead to grouping the C/M/O elements in this way? Do learners always start in the top left hand box, or can they start in any box? 

Step 2: The search terms appear to focus on student health care professionals, rather than social care professionals. Were other search terms considered (e.g., social work, psychology, counselling, etc?)

Discussion: The authors conclude with a reflection on the benefits of a realist approach for addressing the research questions. The primary point mentioned here is the benefit for educators. I would be interested to read more on the authors' thoughts about the potential benefits of this project for students and for people with communication impairments.

Minor typographical errors:

In the introduction, "real word complexity" should be "real world complexity"

In the final sentence, "subsequent"

I wish the authors success with this important project and hope that this feedback is helpful as you continue your work in this area.

Is the study design appropriate for the research question?

Yes

Is the rationale for, and objectives of, the study clearly described?

Yes

Are sufficient details of the methods provided to allow replication by others?

Partly

Are the datasets clearly presented in a useable and accessible format?

Yes

Reviewer Expertise:

Communication partner training after acquired brain injury

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard.

HRB Open Res. 2024 Mar 21.
Yvonne Fitzmaurice 1

Dear Dr Rietdijk, thank you for taking the time to review this protocol. We appreciate your very helpful advice. We have made some amendments to our protocol, in response to your and three other reviewers’ recommendations. Additionally, we have addressed all of your suggestions and queries below.

Title and abstract

Consider including the word "protocol" in the title and when describing the methods. For example, the title could state, "A protocol for a realist review". This change would help to set the reader's expectations for the content of the paper.

Thank you, the authors have taken on board your suggestion and amended the title.

Introduction

The introduction to the approach of realist review is reasonably clear to me as a reader who is not familiar with this area. Could the authors support their explanation with an illustrative example of how this approach has been used in a similar field?

Thank you for this suggestion. While an illustrative example of how this approach has been used in a similar field has not been incorporated in this review protocol, the authors agree that this would be a very helpful addition and will explore including such an example when reporting on the completed review.

A definition of the term "middle range theory" would also be useful to add to the text in this section.

Thank you, reference to "middle range theory" this has been added to the introduction under Employing realist review in CPT research, end of paragraph 4.

I would also suggest moving Table 2 to be referenced in this section of the introduction, as these definitions will be helpful to readers unfamiliar with this topic.

We have requested that the editors move this table.

Aims and Objectives

Figure 1 clearly outlines the phases and steps of the project, but this could be described more clearly in the text. For example, the first phase and third phase of the project are defined in the text, but the second and fourth phases are not mentioned.

The reference to Figure 1 could also be moved to this section.

Thank you, reference to the second and fourth phases has now been included.

The reference to Figure 1 has been moved to this section.

Questions

Could you provide some examples of "contexts" (in the same way that you have given some examples of what is meant by "whom" in the previous question.)

Thank you, we have included examples.

Review advisory panel

I was interested in a little more information on how the advisory group works (e.g., How often does the group meet? In-person or online? Are all members present at all meetings, or are there smaller sub-groups which meet to discuss specific issues? Are there any reimbursement arrangements in place?). I was also interested to know if all the student advisors all from an SLT program, or are they from other backgrounds?

Subgroups met (always with one or all content experts) as direct by the content experts during initial programme theory development. Additional information has been added on the review advisory panel in Table 3 (e.g., origins of student advisors) and in the newly added extended data (Summary of advisory panel meetings throughout Step 1 of realist review)

There were no reimbursement arrangements in place at the outset. This is not a funded PhD.

Step 1

Table 3 is well presented and illustrates the IPT concepts well. I had more difficulty following Figure 3. Could you share more about the process that lead to grouping the C/M/O elements in this way? Do learners always start in the top left hand box, or can they start in any box? 

Figure 3 aims to provide a graphic summary of the nine CMOCs detailed in Table 3 and depict that “outcome routes” can be variable and follow planned or unplanned trajectories. Also, it depicts that outcomes can be reached at different rates and be both desirable and undesirable.

The content advisors grouped the original nine CMOCs into the boxes and arrows graphic and refinements were made in consultation with all other advisors. Additional details of meetings conducted during this process have been added in the extended data.

It is not necessary for the reader to start in the top left hand box.

Step 2

The search terms appear to focus on student health care professionals, rather than social care professionals. Were other search terms considered (e.g., social work, psychology, counselling, etc?)

Yes, other search terms including psychology were included.

Discussion

The authors conclude with a reflection on the benefits of a realist approach for addressing the research questions. The primary point mentioned here is the benefit for educators. I would be interested to read more on the authors' thoughts about the potential benefits of this project for students and for people with communication impairments

This review has progressed to the extraction and synthesis phases and potential benefits to all relevant parties are becoming increasingly clear. We aim to report further about the potential impacts of this project for students and for people with communication impairments on the completion of the review.

Typographical errors

In the introduction, "real word complexity" should be "real world complexity" In the final sentence, "subsequent"

Thank you, these errors have been rectified.

HRB Open Res. 2024 Feb 13. doi: 10.21956/hrbopenres.15077.r37731

Reviewer response for version 1

Ariné Kuyler 1

Thank you for the opportunity to review this manuscript. Although the manuscript has merit various questions arose.

Introduction

  • Please very clearly define who you refer to when using the terms student health and social care professionals, as individuals from different countries or backgrounds can interpret this differently.

  • You mention that student health and social care professionals engage with people with stroke-acquired communication disorders in tertiary education. However, it is unclear in what context these individuals are accessed.  Do the individuals with stroke receive therapy or some form of social support or community engagement at the institution??? Or are you referring to student undergraduate education on CPT for persons with stroke?

  • Additionally, are the student health and social care professionals acting as communication partners? Are they familiar or unfamiliar to the person and also what care pathway is taken for persons with stroke-acquired communication disorders to end up with these professionals?

  • Also, you interchangeably refer to student health and social care professionals and healthcare providers, please use one term consistently throughout your manuscript.

  • You mention that this review may enhance and potentially accelerate development and implementation specific to CPT related to stroke in clinical education. How will the review accomplish this?

  • All healthcare providers worldwide are required to provide ethical and evidence-based practice. I can understand that a realist view can be of benefit but how does a realist view correlate with actual evidence-based practice? To provide ethical services a combination needs to be used of theory, clinicians' experience and the reported needs of individuals with stroke and their family members. I am unsure how you are incorporating these aspects.

Questions:

  • Are you looking at the actual implementation of CPT in higher education settings or what the students for example in speech-language pathology are being taught during their undergraduate degree???

  • Please specify the context as your questions are too broad and unclear.

  • Rephrase the question: What CPT interventions are used for SH & SCPs in higher education institutions? To read as follows: What CPT interventions are included in undergraduate curriculums for SH and SCPs at higher education institutions?

  • Rephrase for whom the interventions work or not. A suggestion would be to rather say, what are the beneficial outcomes reported by participants of CPT (including both the person and communication partner)?

  • Desired outcomes and achievable outcomes are very different things. You can change the question to read as follows: How are outcomes measured in CPT interventions taught to students in undergraduate curriculums at higher education institutions?

  • Rephrase What contexts are enabling/inhibitory? To read as What contexts act as facilitators or barriers for the successful implementation of CPT?

  • How these interventions work is a very broad question. Are you referring to the characteristics of the programme??

  • Additionally, are you also thinking of how knowledge and skills taught in CPT are maintained after the intervention is completed?

Is the study design appropriate for the research question?

Yes

Is the rationale for, and objectives of, the study clearly described?

Partly

Are sufficient details of the methods provided to allow replication by others?

Yes

Are the datasets clearly presented in a useable and accessible format?

Yes

Reviewer Expertise:

Communication-partner training; adults with acquired neurogenic communication disorders; palliative care; ICU care; family-centred care

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

HRB Open Res. 2024 Mar 21.
Yvonne Fitzmaurice 1

Dr Kuyler, thank you for taking the time to review our realist review protocol. We are very grateful for your recommendations and questions. We have made some amendments to our protocol, in response to your and three other reviewer’s recommendations. Additionally, we have addressed all of your recommendations and queries below.

Introduction

Please very clearly define who you refer to when using the terms student health and social care professionals, as individuals from different countries or backgrounds can interpret this differently.We have added additional detail in our introduction (paragraph 3, lines 2 & 3).

We have included “pre-registration” in the amended statement below to further clarify what we mean by the word “student”.

You mention that student health and social care professionals engage with people with stroke-acquired communication disorders in tertiary education. However, it is unclear in what context these individuals are accessed.  Do the individuals with stroke receive therapy or some form of social support or community engagement at the institution? Or are you referring to student undergraduate education on CPT for persons with stroke?

When referring to student health and social care professionals engaging with people with stroke acquired communication difficulties, we purposely adopted a general contextual stance to accommodate the range of students and the range of activities that they could potentially engage in across disciplines and institutions. We did not intend to specify one specific activity, set of students or institution.

We have included the following amendment to the introduction to increase clarity:

“Student health and social care professionals (SH&SCPs) who may also, in contexts where professional registration is required, be referred to as  pre-registration professionals, experience similar emotions when interacting with people with stroke acquired communication impairments. Over the course of their clinical training such students may be exposed to a variety of pedagogies and engage in a range of clinical activities and placements involving people with stroke acquired communication impairments.   

Additionally, are the student health and social care professionals acting as communication partners? Are they familiar or unfamiliar to the person and also what care pathway is taken for persons with stroke-acquired communication disorders to end up with these professionals?

The student health and social care professionals referred to in the introduction are not necessarily acting as communication partners.

Later, as we search for and appraise the evidence in Steps 2 and 3 of the review, we only include documents reporting on students engaging in CPT.  These fall under the umbrella of CPT for unfamiliar communication partners. People with stroke acquired communication impairments do not participate on all of these training programmes. Data extraction is currently in train and our findings will be reported on in a future publication, following completion of the review process.

Also, you interchangeably refer to student health and social care professionals and healthcare providers, please use one term consistently throughout your manuscript.

“Healthcare providers” was used once when citing Manning et al., 2019. It was not used interchangeably with SH&SCPs and was referring to what Manning and colleagues labelled healthcare professionals. We have inserted the term used by these authors for increased clarity. “Furthermore, people with aphasia believe that training healthcare professionals the use of communication strategies is important in enabling them to live successfully with the communication impairment (Manning et al., 2019)”

You mention that this review may enhance and potentially accelerate development and implementation specific to CPT related to stroke in clinical education. How will the review accomplish this?

At the beginning of this sentence, we state that the review may accomplish this “By building on current knowledge and uncovering relevant “families of mechanisms”.  “Families of mechanisms” is explained in greater detail in the preceding paragraph. Additionally, in our discussion and conclusion we provide further support for this argument.

All healthcare providers worldwide are required to provide ethical and evidence-based practice. I can understand that a realist view can be of benefit but how does a realist view correlate with actual evidence-based practice? To provide ethical services a combination needs to be used of theory, clinicians' experience and the reported needs of individuals with stroke and their family members. I am unsure how you are incorporating these aspects.

A realist review adds theoretical and explanatory evidence to the evidence base. Unique to systematic data synthesis approaches, it incorporates an advisory panel (in our review comprising of PPI advisors with lived experience of stroke, student advisors who have participated on CPT, content advisors who have implemented CPT, realist advisors and an educational advisor) that consults throughout the review process.  In our review this panel will collectively agree the finalised programme theory. The outcome of this review will be a middle range programme theory explaining how CPT is expected to be operationalised by educators in higher education institutions and our advisory panel reflects the particular needs of this demographic. Clinical, educational, emic and end user expertise is harnessed in theory development.

This middle range programme theory will be developed further during the subsequent phases of this research project (See Figure 1) and, in due course, reported on in further publications. The ultimate aim (Phase 4) is to provide guidance for educators wishing to implement CPT for their students. The focus on contextual variables during theory development will enhance implementation efforts for individual educators in variable contexts. However, actual implementation- the next step, is beyond the scope of this project and will require further attention to the issues you raise, specific to the educational setting.

Questions

Are you looking at the actual implementation of CPT in higher education settings or what the students for example in speech-language pathology are being taught during their undergraduate degree?

No, as outlined in the response above, this is not looking at  actual implementation and, it is not considering what is being taught on the SLT curriculum

Please specify the context as your questions are too broad and unclear.

Context is defined in Table 2 as “Any condition that triggers and/or modifies the behaviour of a mechanism” in the generation of outcomes (Duddy & Wong, 2023 p.3). Contexts may be social, psychological, material, organisational, economic etc. (http://www. ramesesproject.org/media/RAMESES_II_Context.pdf).

We have amended one question to add examples of context - What contexts (e.g., organisational, pedagogical, psychosocial) are enabling/inhibitory?

Three other reviewers do not concur with this statement that questions are too broad and unclear. One reviewer has stated that all questions have been “clearly articulated”.

Rephrase the question: What CPT interventions are used for SH & SCPs in higher education institutions? To read as follows: What CPT interventions are included in undergraduate curriculums for SH and SCPs at higher education institutions?

We have not changed this question in line with the response above. Also, not all students are at undergraduate level.

Rephrase for whom the interventions work or not. A suggestion would be to rather say, what are the beneficial outcomes reported by participants of CPT (including both the person and communication partner)?

Thank you for your suggestion. This question was designed to align with realist inquiry. “Realist review applies realist logic to answer the necessary range of pertinent questions - what works, for whom, under what conditions, to what extent, how and why? (Pawson et al., 2004; Wong et al., 2012; Wong et al., 2013). The structure of the question will allow for exploration of  CPT  “successes” and “failures” (Wong et al, 2013 p. 1)

We have amended the question as follows: “For whom do these interventions work (or not) (e.g., which SH&SCPs and at what stage of their training; do they benefit people with stroke acquired communication difficulties participating as co-trainers or communication partners)? ” 

Desired outcomes and achievable outcomes are very different things. You can change the question to read as follows: How are outcomes measured in CPT interventions taught to students in undergraduate curriculums at higher education institutions?

Thank you for your suggestion. However, determining how outcomes are measured is not a primary focus of this review. In this protocol we are interested in exploring how CPT works to bring about the outcomes that are both desirable and achievable in the specific contexts that they are delivered.

Rephrase What contexts are enabling/inhibitory? To read as What contexts act as facilitators or barriers for the successful implementation of CPT?

Thank you for your suggestion. Prior to articulating this question, we debated the use of terms including the terms facilitators and barriers. We argue that the terms enablers and facilitators and barriers and inhibitors are used interchangeable in the literature, and prefer to retain the original text in the question. As stated above we have added examples of context to this question.

How these interventions work is a very broad question. Are you referring to the characteristics of the programme?

No, we are not referring to the characteristic of a single programme, rather we are referring to CPT programmes in general and the mechanisms that are triggered (i.e., reasonings and responses) in specific contexts to explain potential outcomes. The question “How do these interventions work” explores what mechanisms are enabled in specific contexts to operationalise desired/undesired/ unexpected outcomes and is integral to realist enquiry and programme theory development.

Additionally, are you also thinking of how knowledge and skills taught in CPT are maintained after the intervention is completed?

Yes, we are, in our exploration of how CPT works.  Of note, to date in our data extraction process, just one study has addressed this query (Power et al., 2023). Our findings will be reported on in detail in due course.

HRB Open Res. 2023 Nov 21. doi: 10.21956/hrbopenres.15077.r36931

Reviewer response for version 1

Marina Charalambous 1

Dear Authors,

Thank you for the opportunity to review your study protocol on "Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A realist review." Your study protocol explores the complex landscape of stroke-specific communication partner training using a realist review approach, which I find suitable for the aim of the project.

The authors effectively contextualize in the introduction the importance of communication rehabilitation for individuals who have had a stroke. They also emphasize the crucial role of communication partner training, particularly for student health and social care professionals. The review's methodology is considered appropriate. Also, the authors suggest using a Patient and Public Involvement (PPI) approach throughout the research process, which is suitable for the project's scope. However, the introduction lacks important information on PPI. To make the manuscript more informative for the reader on PPI, I suggest adding the following to the introduction:

  1.  The definition of PPI (National Institute of Health Research, 2014 or other relevant sources),

  2.  A brief description of the different types/levels of PPI (Arnstein’s work on the ladder of participation in 1969),

  3.  An explanation of why the formation of the ‘advisory groups’ was selected compared to active PPI partnership (Charalambous et al., 2022; Mc Menamin et al., 2022).

Additionally, it would be helpful to add a paragraph in the methods section specifically explaining the following:

  1. How were the advisory groups created? It seems that the advisory groups do not participate equally in the project.

  2. Did other advisors besides the content and realist advisors play any role in formulating the research questions and deciding on the design of the study?

  3. What were the participatory methods employed in the project?

  4. What is the PPI framework that the authors will use to design and monitor the contributions of the 'people with lived experience of stroke acquired communication impairments/PPI advisors'? Referring to the PAOLI framework developed by Charalambous and colleagues in 2023.

  5. How will the authors approach the PPI patients in all advisory groups to avoid tokenism, especially those with communication difficulties?

  6. What are the obligations of the 'People with lived experience of stroke acquired communication impairments/PPI advisors' in the research team?

  7. What are the contributions expected from all PPI advisory groups in each phase of the project? Please briefly explain how involving PPI will improve the study's impact and the implementation of the results.

This information will ensure transparent documentation of PPI and especially patient advisors’ contributions. It would be useful to include a table showing expected/completed PPI contributions from each advisor group in each project phase.

It would be helpful to provide additional demographic data on the two PPI advisors who have lived experience of stroke and related communication impairments. This data could include information such as the type and severity of the communication impairment, time since the stroke, previous and current employment, marital status, level of education, and psychosocial information. This information would provide the reader with a clearer understanding of the patient advisors' level of involvement within the research team.

While the review is yet to reveal its findings, the anticipation is high for insights that extend beyond mere program efficacy. By exploring the 'why' and 'how' behind communication partner training effectiveness, the study has the potential to provide actionable recommendations for refining and tailoring interventions to the unique needs of individuals with stroke-induced communication impairments. To ensure that the findings of the study are robust and applicable across diverse contexts, it's crucial to acknowledge and address several factors such as the diversity in stroke manifestations, varying communication needs, and the dynamic nature of healthcare settings.

It is suggested that the authors provide a more comprehensive explanation of their approach to supporting PPI patient advisors throughout phase 2 of the project, with particular attention to addressing their communication challenges. This information will be useful for other researchers who wish to learn how to better support team members with communication difficulties. Finally, including patients and the public in research communication and dissemination strategies helps bridge the gap between scientific findings and the broader community. Please describe how the two PPI advisors who have lived experience of stroke and related communication impairments will be involved in disseminating the project’s outcomes.

I hope that the suggestions I have provided will be helpful. Good luck with your project.

Is the study design appropriate for the research question?

Yes

Is the rationale for, and objectives of, the study clearly described?

Yes

Are sufficient details of the methods provided to allow replication by others?

Partly

Are the datasets clearly presented in a useable and accessible format?

Yes

Reviewer Expertise:

Patient and Public Involvement (PPI) in stroke and aphasia research

I confirm that I have read this submission and believe that I have an appropriate level of expertise to confirm that it is of an acceptable scientific standard, however I have significant reservations, as outlined above.

References

  • 1. : Patient and public involvement in health and social care research: a handbook for researchers by research design service London. London: NIHR .2014;
  • 2. : A Ladder Of Citizen Participation. Journal of the American Institute of Planners .1969;35(4) : 10.1080/01944366908977225 216-224 10.1080/01944366908977225 [DOI] [Google Scholar]
  • 3. : The views of people living with chronic stroke and aphasia on their potential involvement as research partners: a thematic analysis. Research Involvement and Engagement .2022;8(1) : 10.1186/s40900-022-00379-1 10.1186/s40900-022-00379-1 [DOI] [PMC free article] [PubMed] [Google Scholar]
  • 4. : Distinctions and blurred boundaries between qualitative approaches and public and patient involvement (PPI) in research. International Journal of Speech-Language Pathology .2022;24(5) : 10.1080/17549507.2022.2075465 515-526 10.1080/17549507.2022.2075465 [DOI] [PubMed] [Google Scholar]
  • 5. : The development of the People with Aphasia and Other Layperson Involvement (PAOLI) framework for guiding patient and public involvement (PPI) in aphasia research. Research Involvement and Engagement .2023;9(1) : 10.1186/s40900-023-00484-9 10.1186/s40900-023-00484-9 [DOI] [PMC free article] [PubMed] [Google Scholar]
HRB Open Res. 2024 Mar 21.
Yvonne Fitzmaurice 1

Dr Charalambous, thank you for taking the time to review our protocol. We are very grateful for questions you have posed and the recommendations you have made. We have made some amendments to our protocol, in response to your and three other reviewers’ recommendations. Additionally, we have responded to all your queries and recommendations below.

To make the manuscript more informative for the reader on PPI, I suggest adding the following to the introduction:

The definition of PPI (National Institute of Health Research, 2014 or other relevant sources)

A brief description of the different types/levels of PPI (Arnstein’s work on the ladder of participation in 1969)

An explanation of why the formation of the ‘advisory groups’ was selected compared to active PPI partnership (Charalambous et al., 2022; Mc Menamin et al., 2022).

Thank you for the recommendation for the introduction section. The following edits have been made:

The INVOLVE definition adopted for the National Institute for Health Research (NIHR) of PPI has been included in a new PPI section added to the introduction.

Arnstein’s Lader of Participation and the PPI Spectrum of Involvement in Research Model (IHRF, 2015) have been referenced in the newly added paragraph on “Level of PPI contributor’s involvement in this realist review”

A paragraph on incorporating PPI in realist review has been added to address the formation of the advisory panels.

How were the advisory groups created? It seems that the advisory groups do not participate equally in the project.

To address this query, we have added Table 3 to our methodology. It provides an overview of the advisory group (now labelled advisory panel) including rational for including the specific advisors and their expected roles. Also we have added a summary of advisory group meetings during Step 1 of the review to extended data.

Did other advisors besides the content and realist advisors play any role in formulating the research questions and deciding on the design of the study?

No, only the content and the realist advisors played a role in formulating the research questions and deciding on the design of the study. In the newly added Table 3, we have clarified the roles of all advisors (realist, content, student, PPI and educationalist). Additionally, the roles of advisors are overviewed in the new paragraph included in our introduction.

What were the participatory methods employed in the project?

Participatory methods are not employed in the project. The first author, an experienced speech and language therapist, used supportive communication strategies and techniques to ensure that the PPI contributors with communication impairments:

  • Understood important details such as the review’s aims and demands (e.g. level of involvement and time)

  • Could actively engage in programme theory refinement (e.g. IPTs presented one at a time and in simpler parts as requires)

What is the PPI framework that the authors will use to design and monitor the contributions of the 'people with lived experience of stroke acquired communication impairments/PPI advisors'? Referring to the PAOLI framework developed by Charalambous and colleagues in 2023.

The authors have included Abrams et al. (2020) who published a series of prompts for researchers and PPI contributors engaging in realist reviews (https://www.spcr. nihr.ac.uk/news/blog/the-role-or-not-of-patients-and-thepublic-in-realist-reviews). The authors have selected this resource given that this protocol is for a realist review.  (Referenced in introduction and methodology)

In Phase 2 of this project, we will explore other frameworks to capture PPI contributor’s experiences, including the PAOLI framework (Charalambous et al., 2023)

How will the authors approach the PPI patients in all advisory groups to avoid tokenism, especially those with communication difficulties?

The authors are committed to authentic PPI involvement and five of the seven authors are experienced PPI facilitators, additionally six of the seven authors are experienced speech and language therapists who are skilled in using communication techniques and strategies to support the authentic involvement of people with communication impairments. Also, we are adhering to McMenamin et al’s (2021) “top tips”.  We have added additional detail on “Enabling active involvement of PPI advisors in realist review” and provided a sample of the adapted materials used for PPI Advisor 1 in newly added extended data.

What are the contributions expected from all PPI advisory groups in each phase of the project?

Please briefly explain how involving PPI will improve the study's impact and the implementation of the results

In phase 1 of this project the PPI advisors have considered, reviewed and contributed to the development of initial programme theories and ensured their validity for people with communication impairments.

This publication is only related to Phase 1 of the project, i.e., the protocol for the realist review.  All phases of the project are referenced in this publication to provide the reader with context for the realist review. Phases 2, 3 and 4 are not detailed here but, will in due course, be developed in subsequent articles and the contribution of all PPI advisory groups in each phase will be detailed.

What are the obligations of the 'People with lived experience of stroke acquired communication impairments/PPI advisors' in the research team? This information will ensure transparent documentation of PPI and especially patient advisors’ contributions. It would be useful to include a table showing expected/completed PPI contributions from each advisor group in each project phase.

The obligations of the “people with lived experience of stroke acquired communication impairments/PPI advisors” are outlined in the newly added Table 3.

It would be helpful to provide additional demographic data on the two PPI advisors who have lived experience of stroke and related communication impairments. This data could include information such as the type and severity of the communication impairment, time since the stroke, previous and current employment, marital status, level of education, and psychosocial information. This information would provide the reader with a clearer understanding of the patient advisors' level of involvement within the research team

Thank you, brief summary detail on type and severity of communication impairments of our PPI advisors has been added to the methodology section.

In Phase 1, the authors (experienced speech and language therapists and PPI facilitators) ensured that the supportive communication strategies and techniques employed facilitated authentic involvement of the PPI contributors.

Please describe how the two PPI advisors who have lived experience of stroke and related communication impairments will be involved in disseminating the project’s outcomes.

Advisors will co-create a dissemination plan to share the findings of this research. In collaboration with the PPI advisors, dissemination strategies that will be meaningful to people with communication impairments will be co-developed e.g., co-authorship of research papers; co-presentation at workshops etc. For example, to date one PPI advisor and the lead author have presented their reflections on their experiences of collaborating on a realist review at a Palliative Care Workshop, focused on involving people with communication impairment in research.

It is suggested that the authors provide a more comprehensive explanation of their approach to supporting PPI patient advisors throughout phase 2 of the project, with particular attention to addressing their communication challenges.

Thank you for this recommendation. When reporting on Phase 2 of this project the authors will provide a comprehensive explanation of their approach to supporting PPI patient advisors throughout this phase of the project and addressing their communication needs.

Associated Data

    This section collects any data citations, data availability statements, or supplementary materials included in this article.

    Data Availability Statement

    Extended data

    Zenodo: Additional Supporting Data: Communication partner training for student health and social care professionals engaging with people with stroke acquired communication difficulties: A protocol for a realist review. http://dx.doi.org/10.5281/zenodo.10850179

    The following supporting data is included:

    • Materials included in scoping exercise in development of initial programme theories

    • Sample of adapted explanatory materials for PPI advisor with severe aphasia

    • Summary of advisory panel meetings throughout Step 1 of realist review

    Data are available under the terms of the Creative Commons Attribution 4.0 International license


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