The involvement matrix as a framework for involving youth with severe communication disabilities in developing health education materials

Abstract Introduction Involving youth with severe communication disabilities in health research is foregrounded in a perspective of rights and participation. Researchers aligned with a participatory and inclusive research agenda recommend that involving youth in health research should be a deliberate and well‐planned process. However, limited examples exist of how researchers can facilitate the involvement of youth with severe communication disabilities in research projects. Method The aim of this paper was to describe the application of the Involvement Matrix as a conceptual framework to guide the three phases of a research project with youth with severe communication disabilities. Results Six youth aged 19–34 years consented to be involved in the project. All youth had a severe communication disability and used augmentative and alternative communication (AAC) to support their involvement in the research project. The Involvement Matrix provided a structure to delineate four involvement roles in three research phases: In Phase 1, youth were listeners to research information and advisors in the needs analysis. In Phase 2, as advisors and decision‐makers, youth provided their opinions on selecting picture communication symbols for health materials. In Phase 3, as partners, they were copresenters at an online youth forum. Conclusion The Involvement Matrix was used to plan and implement the involvement of youth with severe communication disabilities in codeveloping health materials for use during the COVID‐19 pandemic. The Involvement Matrix can be applied together with AAC to enable meaningful involvement of youth in a health research project as listeners, advisors, decision‐makers and partners. Patient or Public Contribution This study project was codeveloped with youth with severe communication disabilities who use AAC in South Africa. A person with lived experience was involved as an advisor to the health material development process and in the drafting of the manuscript.


Involvement of direct stakeholders (the individuals directly impacted)
in health research has gained momentum with an international spotlight on participatory and inclusive research agendas. [1][2][3] These agendas highlight the need for research to be carried out with those for whom it is intended and not merely on or for them. 4 In participatory research, individuals living with a health condition are actively involved in making decisions and providing input into the various phases of the research process. 5 The inclusion of direct stakeholders in the research process changes the power dynamic as the stakeholders are recognized as collaborative partners due to their intrinsic strengths and experiential knowledge gained through lived experience. 6 Several models have attempted to categorize the various degrees of participation of stakeholders (especially children and youth) in the research process. The most prominent of these models is Hart's 7 ladder of participation.
The ladder metaphor for participation builds on the seminal work of Arnstein 8 and represents an upward progression of participation as different rungs on a ladder from varying degrees of nonparticipation up to full participation of stakeholders in projects that are stakeholder led. 6,7 A critique often levelled at the participation ladder is that it suggests a hierarchy, with the top rung of stakeholder-initiated research and shared decision-making being the desired goal. 9 However, this level of participation may not always be possible or preferred.
The level of participation desired and/or possible is dependent on the field, nature, and stage of a research project as well as the capabilities, characteristics, and needs of stakeholders. 9 In the field of participatory design, a more reflexive approach and nuanced understanding of how control is shared between researchers and participants should be considered. 10 This development is of importance for a variety of stakeholders.
However, it is of utmost pertinence for youth with severe disabilities, including youth who use augmentative and alternative communication (AAC) to overcome severe communication disabilities. 11,12 Youth with severe communication disabilities are a vulnerable group of the population, whose opinions have generally been excluded from research. [11][12][13] Moreover, when they are consulted about their opinions, they are usually recruited as research participants on whom research is conducted. 12,14 Rarely are they brought to the centre of the research process where they are valued for their expertise and their involvement in health research. [15][16][17] Three factors may contribute to their exclusion in health research involvement: First, severe disabilities manifest during the developmental years, and may be expressed as permanent, life-long intellectual disability with associated physical impairment (e.g., quadriplegia), sensory impairment (e.g., loss of vision) or other chronic health conditions (e.g., epilepsy). 18,19 Due to the presence of developmental disabilities, researchers may have negative assumptions of the capability of youth with severe disabilities to be involved in research in a meaningful way. 20,21 Second, their communication difficulties typically result in complex communication needs. 22 The complexity of communication challenges in comprehension and expression often requires the use of AAC. AAC may include electronic devices (e.g., speech-generating devices), tools (e.g., picture communication symbols on paper-based boards), or strategies (e.g., gestures, head nods) to involve youth with severe communication disabilities to participate more productively in expressing their healthcare needs. 22,23 Because youth who use AAC require a greater level of communication support to facilitate their involvement in research, researchers may perceive this as requiring extra time and effort. 17,24 Third, despite research highlighting the ability of youth to provide input based on personal perspectives and lived experience, [25][26][27] youth, in general, are often viewed from a deficit-based perspective as risky, problematic, 28,29 and lacking in capacity. 30 In sum, this means that youth with severe communication disabilities face greater barriers to participation in research than their typically developing peers 11,17 and are often under-valued by researchers for their role in research. 21 However, from a perspective of rights and participation, efforts should be made to enhance their involvement in health research. 31,32 The United Nations Convention on the Rights of the Child (UNCRC), through Article 12, asserts the fundamental right of children and youth to voice their opinion in matters that affect them in accordance with their age and maturity. 33 Furthermore, Article 23 of the UNCRC (1989) mandates the creation of conditions to facilitate their participation and involvement in daily life.
Implicit to these rights is the acknowledgement of their agency to express themselves, to have autonomy over their bodies, and to engage in decision-making over their healthcare needs. 33 In fact, health interventions such as health-related materials are more likely to be relevant and impactful when youth with severe communication disabilities are involved in the development process with researchers. 17,34 Involvement in health interventions has escalated in significance under the current global COVID-19 pandemic. Youth with severe DADA ET AL. | 1005 communication disabilities require access to inclusive health education not only to understand newly adjusted health and social protocols but also to express their health needs as COVID-19 symptoms arise. 35 People with disabilities are generally a vulnerable group in terms of COVID-19. They are at higher risk for contracting the Coronavirus as they often have to rely on caregivers or live in residential facilities. 36 Given the imperative to tailor inclusive healthrelated COVID-19 information to accommodate the cognitive, sensory and physical needs of youth with severe communication disabilities, 35 creating opportunities for their involvement in health research is an urgent priority. 37 To enable this type of research involvement, two actions are required. On the one hand, it is incumbent on researchers to believe that youth with severe communication disabilities play a unique role in shaping the development of health interventions. 38 On the other hand, youth with severe disabilities need to be given clarity on their roles and explanations of how these roles will be enacted alongside researchers. 38 Researchers therefore have a responsibility to execute these actions in a thoughtful and well-planned manner.
However, it has been shown that researchers are unsure of how youth with severe communication disabilities can be involved practically in research projects. 39,40 They may also be unaware of tools that can facilitate their involvement. 16

| The current research project
The research project was underpinned by the paradigm of participatory research through involvement of youth who use AAC. Within discourses on participatory research, a broad spectrum of terminology is used to describe various types of involvement in research, for example, coproduction 42 and codesign. 43 In the current study, public and patient involvement is defined as 'research that is carried out with those for whom research is intended and not merely on or for them'. 4 Within the context of this study, we refer to codevelopment as the process of youth with disabilities working with the researchers to develop health educational materials. 34 The current research project aimed to codevelop accessible health education materials with youth who use AAC for use in the The current paper reports on the Involvement Matrix that was applied to describe the involvement of youth who use AAC in the research project. The specific objectives of the current paper are to describe: 1. the process of applying the Involvement Matrix to guide the involvement of youth who use AAC in this study project and 2. the roles that they took on during the three research phases of the project.

| Materials: Involvement Matrix
The Involvement Matrix 40 was recently developed through cocreation by researchers and stakeholders (also called experience experts).
It has been suggested to be a useful conversational tool to help researchers and experience experts to concretize and delineate roles and parameters of involvement within a participatory research project. 40 The Involvement Matrix was developed within the paradigm of participatory research and principles of patient and public involvement (PPI), that is, (i) respecting an individual's right to be involved in research that affects them, and (ii) incorporating their lived experience in the research in a way that complements the expertise of researchers. 40 The Involvement Matrix 40  was also used to support this involvement in Phases 2 and 3 based on their interest, availability and consent to be involved.

| Recruitment
In this study project, youth who use AAC were recruited within the age range of 18-34 years as per South Africa's Youth Commission Act (1996). Youth from across the nine provinces in South Africa who had a severe disability were considered eligible to participate in the study.
As per the definition of severe disability, youth were recruited based on their lived experience of having a severe communication disability.
All youth used AAC systems and required AAC as a mechanism of communication for participation in the study.
Convenience sampling was used to identify and recruit potential youth with severe communication disabilities from a database at the Centre for Augmentative and Alternative Communication. Recruitment of youth took place between July 2020 and August 2020. In Phase 1, an infomation letter was distributed to the potential youth via WhatsApp and email to explain the purpose of the study and their expected role in this phase of the study. Each aspect of information was presented using simple sentences and pictures to aid understanding. This was conducted using Qualtrics © , 44 a cloud-based platform for creating and distributing online surveys. In addition, the information was presented in an auditory format using the audio function on Qualtrics ©44 to enable participants with lower literacy levels to listen to the questions being read. The participant opened the questionnaire and it automatically began reading the first piece of information to them. Once the information had been presented, the participants were asked to indicate if they understood the information. If they responded 'yes' (through selecting an option, which was also described in the auditory feedback), they were moved onto the next piece of information. If the participants indicated that they did not understand the information, then the consent process was stopped and a follow-up online interview was conducted. Once all the information had been presented, each aspect of consent was recast and the participants were asked to consent to be a part of the study or could choose not to consent and exit the study. As all participants in the study were over the age of 18 years, consent from their caregivers was not required.
The participation of youth in the study was voluntary, and there was no financial or tangible benefit attached. Youth who were involved in Phase 1 of the study were asked verbally and confirmed in written format if they would like to continue with their involvement in the study during Phase 2 and thereafter during Phase 3.

| Description of youth with use AAC
In total, six youth with severe communication disability consented to participate in Phases 1 and 2 of the study and three consented to take part in Phase 3, as shown in Table 1    3. Confirmation of understanding from the researcher was obtained using yes/no questions.

Youth 5 25 Male
A tablet running verbally, direct access. Use of writing using pen and paper.
1. Completion of an online questionnaire on a phone.
2. Use of speech in response to questions with confirmation of understanding obtained by the researcher through the use of yes/no questions.
3. Use of pen and paper to write longer answers down or draw images for clarification.
4. WhatsApp group chat using direct access. The videos themselves were produced by students at the University of Pretoria based on the needs analysis from Phase 1 of the study.
Once produced, each video was sent to the youth for their feedback, and recommendations for changes.

Phase 3:
The third phase of the study (implementation) involved the sharing of the resources coproduced during this study as well as the sharing of experiences during the study. All the youth who participated in the study were invited to attend the information sharing via a webinar. Those who indicated that they would like to be involved were included in producing feedback for presentation at the webinar. The feedback was provided in written format to the researcher, who then added audio reading of the information so the webinar attendees could hear and see the information presented. In providing the audio reading, the youth were asked what 'voice' (digital voice) they would like to use to represent themselves. The youth who use AAC were then also able to join the webinar discussion using the 'chat' feature on the webinar platform. During the webinar, the researcher ensured that when one of the youth was asked a question, he or she was provided with time to answer in the chat section. The researcher then read out this answer for the benefit of all attendees.

| RESULTS
In this section, the results are presented by first describing the youth and then their roles in the three research phases.

| Application of the Involvement Matrix in the research project
The researchers applied the Involvement Matrix to map out and guide the planning of how youth with severe communication disabilities would be involved in this project. The Involvement Matrix is flexible in its application. This means that it may not be necessary to apply all five roles of the Involvement Matrix, but rather consider the possible roles that youth could be involved in. 39 In this study, the roles of youth as (1) listener, (2) advisor, (3) decision-maker and (4) partner are reported.
This process is shown in Figure 1. Procedurally, the researchers planned the phases of the project to overlap with the three research phases outlined in the Involvement Matrix. One member of the research project team led the data collection activities with the youth in Phases 1 and 2. As shown in Figure 1, youth were thoughtfully involved in activities related to the preparation, codevelopment and dissemination to ensure that the intended health education materials were both of interest and relevance to them.
The definitions of the five involvement roles of the youth from the beginning of project to the end are shown in Table 2. Each role will be described in the sections that follow.
In Phase 1, youth who use AAC served two roles, namely, those of listener and advisor. Phase 1 entailed a needs analysis that was conducted as a semistructured interview with each of the youth through online chats. The researcher (third author) conducted this process using online platforms, that is, Zoom (web-based video meeting app) and WhatsApp messenger. Video calls allowed the researcher to see the youth with severe disabilities, which helped with understanding the information that the youth provided.

| Advisor
During the needs analysis, the were youth also involved as advisors. Other youth had a neutral opinion on the use of colour for the AAC symbols: For me it does not make a difference (Youth 1)

| Decision-makers
As decision-makers, youth were given the opportunity to upload their suggestions of what symbols they thought might work. These symbols were either sourced by themselves from the internet or were drawn by themselves. While youth acted mainly in the role of advisors, they also took initiative themselves to make decisions related to age, gender, and race by specifying their preferences, as shown in their responses to various symbols below: Without colour of a skin (Youth 2) We mustn't forget about age differences (Youth 6) Add female symbols because I see male or boy symbols in all of them (Youth 3) The youth also felt that the AAC symbols should not resemble cartoons or androgynous shapes, but rather depict images of real people: … they should look like normal people that will be more clear.  The researchers of the project were mindful not to rely on their ideas but worked with youth who use AAC to obtain complementary perspectives through their lived experiences as experts of their health condition. 2,40 The youth embraced the opportunity to be involved in a research project in which their opinions were not only listened to but their advice and decisions were implemented.  14,47 Our findings may suggest that the involvement of youth who use AAC in various roles throughout the research process could possibly lead to outcomes that may potentially be more valued and acceptable to youth. 41,46 Methodologically, the findings of this project concur with health and disability researchers who have recognized that PPI in research is an important and possibly even a necessary component of a well-designed research project. 1 Our study highlights that despite the complexities of severe communication difficulties, involving youth who use AAC in research is possible when it is planned and guided by the roles framed in tools such as the Involvement Matrix.

| Strengths and limitations
In this paper, three main strengths emanating from the application of the Involvement Matrix 39   appears to provide researchers with an opportunity to think clearly and critically about the various roles that youth with disabilities can play and to carefully plan and formalize these roles within an organized framework.