Methodological reflections

In order to gain a complete picture of the expectations and realities of inclusive health research, all potential inclusive health research stakeholders were involved: people with ID, academics, support staff, and experts with and without ID. These stakeholders all have different perspectives on inclusive health research, as can be seen in the roles and responsibilities for researchers with and without ID identified in Chapter 6. Whereas researchers with ID might focus on what their experiential knowledge can add to research, researchers without ID focus more on how this translates into research results. Stakeholders’ perspectives were gathered internationally, through international literature (Chapter 2), online questionnaires with academics from all over the world (Chapter 4), interviews and focus group discussions with inclusive researchers in the Netherlands, Ireland, and Northern Ireland (Chapter 5), and online feedback rounds with experts around the world and at the 2016 IASSIDD World Congress (Chapter 7). However, these international perspectives are mainly from Western countries, and it would have been interesting to involve non-Western perspectives as well. Additionally, the international aspects of this thesis show that inclusive health research is partially subject to national policies, such as social benefits, which influence the salary of researchers with ID. This finding contributes to the awareness that inclusive health research is even more context related than initially expected.

The strategies used to reduce researcher bias and increase validity were: data triangulation, data saturation, researcher triangulation, continuous reflection, and methodological support. Several data sources were used to triangulate data: literature (Chapter 2), questionnaires (Chapters 3 and 4), interviews (Chapters 4, 5, and 6), focus group discussions (Chapters 5 and 6), study documents (Chapters 5 and 6), and a consensus process (Chapter 7). These data sources are suited to the main objectives of this thesis and resulted in insight into inclusive health research ranging from individual accounts to expert opinions. To upscale the knowledge gained, it would be interesting to focus on more quantitative inclusive research methods. Data were gathered until no new themes emerged and a feeling of saturation was reached. This PhD research has a strong reflexive component, as it aimed to both study inclusive health research and adopt an inclusive approach in the study. Meetings with the daily supervisor, Jenneken Naaldenberg, were scheduled every two weeks, and meetings with all supervisors were scheduled

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every two months. Researchers from diff ering backgrounds were involved in this PhD research: health sciences, medical sciences, disability studies, research methodology, and ID medical practice. Collaborating with researchers with ID required insight into social, health, and methodological processes and specific insight into the needs of people with ID. This resulted in unique perspectives on the study and contributed to rich discussions on, for example, data analysis. The aim to study inclusive approaches was reflected in the methodology used in this thesis. First, an advisory board consisting of people with ID, relatives, support staff , and researchers met every three months to discuss the status and key decisions of this PhD research. The advisory board was, for example, heavily involved in the development of an easy-read information folder on the case study presented in Chapter 5. Through their involvement, the folder changed drastically and became more accessible to people with ID, making the study results more applicable to practice. Second, information and informed consent was provided and obtained through easy-read and accessible forms developed by the researchers with ID. Consent from people with ID can be challenging due to the risk of socially desirable answers without their fully comprehending the meaning of consent (Finlay, 2015; Finlay & Lyons, 2001). Aft er providing input for this PhD research, the researchers with ID started advising other researchers in the group on their informed consent documents.

Figure 8.2 Level of inclusiveness of this thesis

An aim was that studies in this thesis would become increasingly inclusive as experiences grew. Therefore, the following inclusive approaches were adopted per study (see Figure 8.2):

1. Structured literature review: nobody with ID was actively involved. 2. Structured interview survey: survey questions were compiled in

collaboration with two researchers with ID.

3. Modified Delphi study: one researcher with ID was consulted to discuss the elements in the questionnaires, and the results of the study were discussed with an additional researcher with ID.

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4. Case study: two researchers with ID collaborated during the study design, data collection, data analysis, and part of the data interpretation.

5. Consensus statement: 40 experts on inclusive health research with people with ID provided feedback on the Consensus statement and developed the easy-read version of the statement. Two researchers with ID were consulted throughout this consensus process.

6. MCA study: two researchers with ID collaborated during the study design, data collection, data analysis, and data interpretation.

As can be seen from the above list, the inclusivity grew over time, with the first study in this thesis not actively involving researchers with ID (Chapter 2) and structural collaboration with researchers with ID taking place in the last three studies (Chapter 6). In order to be able to collaborate with researchers with ID, research methods needed to be adapted for understandability and workability purposes. This was a learning process, in which our inclusive research team had to get used to one another and develop an inclusive mindset. For instance, at the beginning of the collaboration with researchers with ID, the PhD graduate envisioned a collaboration in which the researchers with ID were in control. Over time, the aforementioned idea of balance emerged, resulting in the aspiration for an equal partnership. A methodologist was consulted to discuss possibilities regarding the adaptations of existing methods and ensuring research quality. Both the research design and the time schedule had to be flexible to be able to respond to the researchers with ID’s input. For example, in the MCA study, several adaptation options for the data analysis had to be piloted before a decision could be made about which approach worked best. Overall, collaborating with researchers with ID in this thesis required extra effort, but the steps taken towards an inclusive approach (extra time, flexibility, responsiveness, methodological expertise, and so on) resulted in a rigorous inclusive approach and good quality research.

The literature review (Chapter 2) addressed the myth of homogeneity, which emphasises the diversity of people with ID and the impossibility of one person with ID representing the whole group. Respondents with ID in this thesis required a certain level comprehension. For example, they had to be able to understand concepts like project or participation. Although an effort was made to make the

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studies in this thesis accessible through collaboration with researchers with ID and involving a heterogeneous group of people with ID, mainly people with mild disabilities were involved. Therefore, the results might not be representative of the entire group of people with ID. However, as this thesis addresses the collaboration between researchers with and without ID, a diverse group of researchers with ID was involved based on different inclusive approaches, on national and international level, and in large- and small-scale inclusive projects.