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Shared decision making in inclusive research: Reflections from an inclusive research team

Background: Health research is increasingly conducted with the active involvement of the people who are the focus of the research. People with intellectual disabilities also participate actively in research; this is called inclusive research. Collaboration in inclusive research teams requires shared decision ‐ making (SDM). Although inclusive studies frequently refer to decision ‐ making as something the research team does together, the decision ‐ making process is still a black box. This study aims to provide more insight into SDM in inclusive research by reflecting on a 3 ‐ year collaboration in an inclusive research team. The research questions are: (1) What kinds of decisions were made by the inclusive research team? (2) How were decisions made by the inclusive research team? (3) What impact did the decisions have on the research project? Methods: To answer the research questions, the inclusive research team members reflected on SDM in their project by looking at the documentation of the inclusive research process and by conducting semi ‐ structured interviews with the team members. Findings: In all research steps, the inclusive research team decided together on the


| INTRODUCTION
There is a strong interest across different domains to involve citizens and patients in scientific research. Examples include participatory and community-based research projects to improve health and well-being (Abma et al., 2019;Cornwall & Jewkes, 1995). In the last decades, health research has increasingly been conducted with the active participation of people who are the focus of the research (Abma et al., 2019;Elberse, 2012;Harrison et al., 2019). This also occurs in research among people with intellectual disabilities (Bigby et al., 2014;Puyalto et al., 2016;Walmsley et al., 2018). Research in which coresearchers with intellectual disabilities are part of the research team and whose perspectives are included is called 'inclusive research' (Walmsley & Johnson, 2003;Walmsley et al., 2018). Inclusive research studies frequently refer to the activities in their research as something that the research team decides together. To our knowledge, literature is scarce on shared decisionmaking (SDM) in participatory research approaches such as inclusive research. Therefore, the current study aims to provide more insight into SDM by reflecting on decision making in a long-term inclusive research project.
Previous studies have focused primarily on the facilitators and challenges of collaboration and decision making in inclusive research (Brookes et al., 2012;Buettgen et al., 2012;Chapman & McNulty, 2004;Michell, 2012). Facilitators include competences of researchers and coresearchers, such as communication skills and a strong trusting relationship between (co)researchers (Embregts et al., 2018;O'Brien et al., 2014). Challenges also relate to relationships, in combination with role divisions and power dynamics between the members of the inclusive research team (Embregts et al., 2018;García Iriarte et al., 2014;Nind, 2017;O'Brien et al., 2014). These challenges vary in line with the varying degrees of involvement that coresearchers can have in research projects, ranging from providing advice to having control over the study (Bigby et al., 2014). Frankena et al. (2016)   found that partnership and SDM power were perceived as crucial in a collaborative form of the inclusive research team. Still, SDM in inclusive research is perceived as challenging because researchers without intellectual disabilities need to support researchers with intellectual disabilities by providing information in language that is easy to understand and guiding the decision-making process without taking control of the decision (Ellis, 2018;Puyalto et al., 2016). These studies highlight that the form of coresearchers' involvement is intertwined with power distribution in decision making and that it is important to find a balance in the inclusive research team to make shared decisions.
Although previous studies have provided examples of research activities by examining the facilitators and challenges of inclusive research, few studies have identified the types of decisions made during inclusive research activities. For example, Flood et al. (2013) reflected on the decisions that they made as coresearchers, such as planning, data collection methods, information sheets for informed consent and supportive materials for researchers during data collection. However, the information and the processes used to make shared decisions during inclusive research activities and the actual impact of SDM on inclusive research remain a black box (Brookes et al., 2012;Buettgen et al., 2012;Michell, 2012).
Inclusive research could learn from the literature on SDM processes in health settings, in which patient-centred care is increasingly guided by patient values and patient participation. Theory and review studies on SDM in clinical settings have produced conceptual frameworks in which key components of SDM are identified (Bomhof-Roordink et al., 2019;McCaffery et al., 2010;Waldron et al., 2020) that show overlap with concepts discussed in inclusive research (Ellis, 2018;McCaffery et al., 2010;Nind, 2017). In general, SDM is based on: (1) understanding the situation and decisions to be made, (2) knowledge transfer and exchange in which awareness of risks, limitations, benefits, alternatives and uncertainties are discussed, (3) identifying individuals' values and preferences and imagining future (health) states, (4) deliberation and participation in decision making at a desirable level and (5) implementing a shared decision and making it consistent with individuals' values and preferences, or postponing the decision (Stacey et al., 2010). Throughout the SDM process, additional components such as determining roles or next steps, fostering partnership, offering time, tailoring information and taking patient expertise into account are deemed important (Bomhof-Roordink et al., 2019). Similar to the findings about SDM having a positive impact on patient empowerment, decisions, (patient) outcomes and effective use of healthcare (Joosten et al., 2011;Légaré et al., 2014;Schattner et al., 2006), SDM in inclusive research is expected to contribute to the empowerment of people with intellectual disabilities, research outcomes, quality of life and the reduction of health (care) inequalities .

| Setting
In this study, reflections were made on the decisions, the (facilitators of the) decision-making process and their impact on research in the inclusive project 'Healthy Settings for People with Intellectual Disabilities'. The funding organisation encouraged the involvement of coresearchers with intellectual disabilities in the execution of the project, which encompassed four studies on health promotion for people with intellectual disabilities (see Table 1). The core members of the inclusive research team were two coresearchers with intellectual disabilities (Anneke and Henk) and an academic researcher (Kristel, PhD student), all employed by the Radboud University and Medical Centre. They followed a training course for inclusive research teams (Sergeant et al., 2020). The decision making reflected upon in this study was part of a 3-year collaboration by the inclusive research team who worked together on a weekly basis to execute the research project (March 2017-July 2020). During the 3-year collaboration as well as the current reflective study we used a collaborative form of inclusive research. This implicates that the coresearchers were invited to contribute and make decisions in every stage of the research process. As a team, we always decided who would be involved in which stage and activities. Therefore, the team decided together when and whether one or both coresearchers would not be involved in some parts of the separate studies T A B L E 1 Overview of aims, data collection methods and participants in four studies on healthy settings for people with intellectual disabilities People with mild/moderate intellectual disabilities could bring a support person during data collection if they wished so. Proxy respondents participated on behalf of people with severe/profound intellectual disabilities.
| 3 belonging to this project. For example, when Kristel initiated the decision how they were going to produce the scientific articles, they decided as an inclusive research team that Kristel would write the first drafts of the scientific articles and that Anneke and Henk would provide verbal feedback.
Advisors on the project were the thesis committee and the project's advisory group. The thesis committee consisted of two senior researchers (including Jenneken) and two professors who pro- Furthermore, this study project was part of a larger overarching project called 'Healthy Settings for People with Intellectual Disabilities' that was supervised by the project team that consisted of representatives of all involved projects. Therefore, in addition to the thesis committee and advisory group, the inclusive research team also had contact with the team leader of the overarching project and the funding organisation.
Their approval was needed if the inclusive research team wished to make changes to the project's proposal. A diagram of the actors involved is presented in Figure 1. A broad description of research topics, aims and methods are presented in Table 1.

| Materials and procedures
The materials used to identify decisions and reflect on SDM were: (1) documentation developed during the project and (2)  (member of the thesis committee) to conduct the semi-structured interviews as they thought that her overview of the project and her ability to talk in an easily understood language would be beneficial for the interviews. The interviews were audio-recorded and conducted in November 2019.

| Analysis
The current study was conducted according to the inclusive research methods that we used throughout the entire project.   To make decisions in these phases, information was needed on available scientific knowledge of the research topic and methods and experiential knowledge of easily understood language and the involvement of participants with intellectual disabilities in research. To apply this knowledge together, the team deemed the following as helpful: asking one another questions, explaining, discussing the scientific and the experiential knowledge together in easily understood language and using visual supports.

| Decision making on the study plan
The impact of these decisions on the project was, for example, that the methods were drafted and evaluated in small iterative steps enabling step-by-step improvements to enable meaningful participation of people with intellectual disabilities as study participants (e.g., in Studies 2 and 3).

| Decision making on data collection and analysis
For data collection and analysis, content-related decisions were made and roles were divided. Content-related decisions included, for example, how to conduct data analysis inclusively. For Study 2, the focus groups' voice recordings were used instead of transcriptions and data were analysed by making a visual web of ideas on paper instead of using the software. For the role division, team discussions were held to prioritise the tasks and the roles on which the coresearchers would spend their available time.
VLOT-van ANROOIJ ET AL. Decide whether the preliminary study is needed to be able to design a method to answer the research question (Study 1 was added) With approval from the funding organisation, Study 1 was added to the project. This enabled conceptualisation and clarification of the healthy settings topic in sub-themes in easily understood language Study plan Define aspects of research plan: choice of research method, adaptations to research method, inclusion criteria for participants, informed consent procedure For Study 3, the team used the questionnaire appraisal system to develop the interview protocol for the cognitive interviews to improve the clarity of the tool

Develop research information letters and informed consent forms
In all studies, easy-read information letters and informed consent forms were available for potential participants with intellectual disabilities to enable informed decision making on whether or not to participate What to incorporate in draft of the data collection methods The draft of the DIHASID tool was built on both the experiential and the scientific knowledge of the research team (Study 3) How to improve the drafts of the data collection methods In Study 2, an adjusted nominal group technique (NGT) was tested among the advisory board. The team incorporated their feedback and split the NGT into two sessions to enable the meaningful participation of people with intellectual disabilities as study participants. In Session 1, ideas were generated using pictures of themes. In Session 2, participants voted on the importance of ideas in a step-by-step voting procedure What supportive materials to provide for study participants In Study 2, participants received handouts for the idea generation session and the voting session to facilitate the process Data collection Who is involved in data collection, how and when?
Anneke and Henk were involved in data collection in group meetings with people with intellectual disabilities (Studies 2 and 4) Roles during data collection Study participants with intellectual disabilities were supported by Anneke and Henk who made them feel at ease and assisted in talking in easily understood language Data analysis Who is involved in data analysis, how and when? Anneke and Henk were involved in data analysis to identify and sort ideas (Study 2), determine the changes needed to make the DIHASID tool clear and usable ( To make decisions about who should be involved in writing and dissemination, specific attention was directed at each person's interests and talents. All the researchers were interested in informing study participants and people with intellectual disabilities in general about the results, but Kristel also wanted to inform other researchers about the results by publishing scientific articles. Competences needed for this task include English scientific writing skills and skills on easy writing for people with intellectual disabilities. The impact of these decisions included the team developing easy-read summaries and video blogs on the study results. Also, researchers with intellectual disabilities were acknowledged as coauthors of scientific publications (i.e., Studies 2, 3 and the current study) that provide insight into the inclusive research process.

| DISCUSSION
This is the first study to examine the types of decisions, information

Writing and dissemination
Content and layout of the summary for study participants All study participants with intellectual disabilities were reminded about the input they gave in the study by providing them with an easy-read summary Whether or not Anneke and Henk are coauthors of a scientific publication and in what form Anneke and Henk are coauthors of the publications relating to Studies 2 and 3 and the current study

What information to incorporate in scientific publications
The scientific publications include information on the inclusive research process Content and layout of the easy-read summary For each publication, an easy-read summary was developed Other, creative ways of disseminating study results For Studies 1 and 2, a vlog was made to share the study results Abbreviation: DIHASID, DIscovering Health-promoting Assets in Settings for people with Intellectual Disabilities. a How decisions were made: In all steps of the research cycle, information was made comprehensible and accessible to enable discussion about it among the inclusive research team. During the discussions, there was room for questioning and talking about pros and cons of decisions to be made until the inclusive research team had the feeling they were able to make a decision together.
| 7 understanding of the situation and decision(s) to be made (Stacey et al., 2010), the inclusive research team identified the different decision types that they made together. The decisions ranged from relatively straightforward and previously identified research activities (e.g., planning, development of easy-read information letters and choice of output materials; Flood et al., 2013), Deliberation and participation in decision making (Stacey et al., 2010) consisted of inclusive research discussions during research activities amongst the research team; for example, developing a data collection method and discussions on task division. For the latter, the team looked at their skills and competences and where these were of most added value to spend the limited time effectively, in the literature reflected as a discussion on team members' roles (Frankena et al., 2018). Whereas in some inclusive research studies the aim is to collaborate in every aspect, our approach was similar to other cases where the inclusive research team worked in partnership, with task division based on individual strengths and skills needed for tasks at hand Nind, 2017). For data collection and analysis in particular, coresearchers' costs of involvement (e.g., extra time and disturbance of regular working times) were also discussed in task division to prevent overburdening. This potential risk of overburdening coresearchers aligns with reflections of other researchers in inclusive research (Nierse & Abma, 2011;Turk et al., 2012).
In addition to the key components of SDM, facilitators of SDM Overall, the impact of the decisions made in the inclusive research project resulted in a transparent research approach in which the inclusive research team deployed individual and team skills. This improved the quality of the studies and empowered people with intellectual disabilities, thereby aligning with potential inclusive research outcomes previously identified (Frankena et al., 2018). clusive research, and this study adds to this knowledge base by providing insight on decision making and SDM processes by using key components of SDM from clinical settings. These insights can contribute to more awareness of decisions and processes that foster fruitful ways of sharing power in inclusive research teams, which is at the centre of inclusive research practice (Walmsley & Johnson, 2003), Furthermore, as this study provides conceptual clarity of SDM, it may contribute to the quality of future inclusive research (Walmsley et al., 2018).

| CONCLUSION
Reflecting on SDM as an inclusive research team provided insight into the types of decisions that inclusive research teams can make per research step regarding content and task division. The variety of decisions presented in this study provides an overview of the opportunities for SDM that inclusive research teams can exploit to achieve their full potential impact on their research project. Also, the overview of key components of SDM processes, which align with SDM in clinical settings, contributes to more conceptual clarity of SDM in inclusive research. In practice, this can create awareness and foster fruitful ways of sharing power in decision making and collaboration in inclusive research teams.