Ensuring the active participation of people with intellectual disabilities in research: implications for researchers and professionals
Judit Fullana and Maria Pallisera
The emergence of participatory approaches in recent decades has provided strong support for the inclusion of vulnerable groups in research processes aimed at generating awareness of the issues that affect them while fostering cooperation, co-learning and empowerment (Stack & McDonald, 2014). However it is still uncommon to find members of communities considered vulnerable participating in research. One such example is that of people with intellectual disabilities (ID), who have long been ignored as a potential source of valuable information and as participants in research (Walmsley, 2010). The idea of‘giving a voice’ is not limited to ‘listening’ to people with disabilities through the use of certain data-gathering instruments or strategies; that is, it is not restricted to awarding them the role of informants. Rather they must be included in the research process itself as a necessary condition for responding effectively to their needs, contributing to improving their living conditions and making their rights exercisable (Johnson, Minogue, & Hopklins, 2014; O’Brien, McConkey, & Garcia-Iriarte, 2014). Based on a research project investigating the transition to adulthood of people with intellectual disabilities, this chapter addresses the shortage of documented tools and strategies available to practitioners, educators, students and researchers in their quest to transform social research design by employing strategies that significantly contribute to including people with intellectual disabilities in educational research. The chapter is based on the authors’ own experience in conducting research with people with ID, in particular the methods implemented to ensure the active participation of participants.
The learning points for the readers are:
• Gaining insight into how to plan and develop research that incorporates the voices of people with intellectual disabilities or other vulnerable groups as informants;
• Applying social and education strategies and methods in research to foster the participation of people with intellectual disabilities and other vulnerable groups as researchers.
Overview of the research study
The transition to adulthood poses one of the most complex challenges not only due to the changes that take place at this time but also the increased uncertainty affecting these young people and their families. Dyke, Bourke, Llewellyn and Leonard (2013) suggest that, compared to non-disabled young people, the transition of adolescents with ID is longer and they have fewer opportunities to participate in significant learning activities that prepare them for adulthood. Research indicates that they experience greater difficulties in accessing vocational training programmes supporting their labour market inclusion (Clarke et al., 2011).There is also a reduction in the formal support they receive from services during adolescence, which consequently leads to changes in the family routine (Dyke et al., 2013; King, Baldwin, Currie, & Evans, 2010). In addition, they experience more difficulties than their peers without disabilities in building and maintaining a social network for support (Small, Raghavan, & Pawson, 2013). Most experience difficulties with regard to independent living (Mill, Mayes, & McConnell, 2010) and do not live with a partner or have children. Indeed many people with intellectual disabilities do not have control over who they have sex or relationships with and whether they will have children (Monk & Townson, 2015).
The emphasis placed over the last decade on recognising the right of people with disabilities to full and effective participation and inclusion in society, promoted by the United Nations’ Convention on the Rights of Persons with Disabilities (2006), has meant that listening to the voices of people with disabilities is now the most important element in determining what they want for their lives and in planning, developing and evaluating the support they are offered. It is necessary to include their voice in the study of processes that can lead to them having greater control over their own lives (Bjornsdottir, Stefansdottir, & Stefansdottir, 2015).
The University of Girona’s Research Group on Diversity (Catalonia, Spain), which the authors of this chapter belong to, addressed this issue by conducting research into the transition to adulthood for young people with intellectual disabilities during the period 2012—2017.' Two aims were defined:
- 1 To identify the main problems faced by young people with ID in their transition to adulthood and determine which factors facilitate transition in their own experience;
- 2 To propose actions or strategies aimed at optimising transition processes to adulthood and working life for people with ID from an inclusive perspective.
In this research, various strategies were implemented to incorporate the voices of people with intellectual disabilities: on the one hand, strategies for listening to their voices as informants; and on the other, in line with the Inclusive Research Approach (Walmsley & Johnson, 2003), actions to increase the participation of people with ID as co-researchers. Inclusive research promotes an active role for people with disabilities in decision-making on objectives and phases of research into issues that affect them (Walmsley & Johnson, 2003). Depending on the type of participation, three main approaches are usually identified: research in which people with ID act as advisors; research in which they act as leaders; and collaborative research (Bigby, Frawley, & Ramcharan, 2014). In line with this, an advisory committee was organised. Its members were made up of people with intellectual disabilities, who participated in various phases of the project: instrument design; data analysis; and dissemination of research results. Listening to the voices of people with ID and including them as co-researchers were the two methodological axes around which the study was organised.
The research was carried out in two main stages. The first consisted of a case study aimed at capturing the complexity of relationships, beliefs and attitudes within a delimited unit, using different forms of data collection (Hamilton & Corbett-Whittier, 2013). Eight young people with ID, aged between 17 and 22 years, participated in the study.They had completed compulsory education and were participating in a transition training course.They participated in two semi-structured interviews, one at the beginning of the study and another at the end, nine months later, when the young people were finishing the training course. Interviews have been used widely in research with people with ID as a method for obtaining data about their experiences and gaining insight into their world (Corby,Taggart, & Cousins, 2015).Two focus groups were conducted to gather insight into identifying supports and difficulties in transition processes. Barr, McConkey, and McConaghie (2003), Cambridge and McCarthy (2001) and Kaehne and O’Connell (2010) advocate the use of focus groups to foster the inclusion and empowerment of people with ID in research. Graphic elicitation, photograph elicitation and Photovoice were used together with interviews and focus groups with the aim of facilitating the active participation of young people and collecting their voices, opinions and assessments. The potential of using visual methods in combination with other methods such as interviews has been highlighted by different authors (Harper, 2002; Keats, 2009), especially when the interviewed person is the one who does the drawings and takes the photographs. The following section explains the visual methods used in research on transition in more detail.
The scripts for the interviews and focus groups were discussed with the advisory committee.The topics dealt with in this study were related to support received during compulsory education and support and difficulties perceived during the transition process, barriers that complicate the process of emancipation from the family home and construction of their future project and perception of support that might help them accomplish this.
The second stage consisted of inclusive research on the process towards independent living. The advisor}' committee, which was created in 2012 and was comprised of ten people with ID, took a more active role in the research, analysing the barriers and support encountered in their independent living process. Over one academic year, they took part in monthly meetings, participating in various stages of the research: collecting information about the research topic by watching films and documentaries on support options and case studies; compiling data through the Photovoice technique; analysing and discussing data; and disseminating the results.
After agreeing to participate in the study, all participants and all members of the advisory committee signed an informed consent document in accessible format, which guaranteed their rights to anonymity and to abandon the study at any time. Table 3.1 summarises the stages of research, participants and
Table 3.1 Method, participants and role of people with ID and strategies in research on transition to adulthood
Role of people with ID
People with ID as informants:
People with ID as co-researchers: Inclusive research strategies
Eight people with ID. 1 7 to 22 years old participating in a transition to adulthood training programme
Two individual interviews including graphic elicitation (Timeline) and drawing about their future expectations Two focus groups, one of them including Photovoice
Creation of an advisory committee (2012-13) who participated in:
Assessing scripts for interviews and focus groups
Participating in interviews and focus group data analysis and discussion
Ten people with ID participating on the Advisory Committee
Two-hour meetings were held once a month at the university during the 2013— 14 academic year
Advisory committee members participated as co-researchers in:
Formulating research questions
Gathering information Identifying barriers and supports to independent living Discussing results Disseminating results
methods used to better include the voices of people with ID and provide them with a more active role in the research as co-researchers.
Interviews and focus groups from the case study were fully transcribed. Two researchers shared out the cases and reviewed them. A thematic analysis was carried out on the initial individual interviews using structural coding (Saldana, 2013); that is, using codes based on the research topics (primary school, secondary school, family, friends, leisure and planning for the future). A third researcher reviewed the coding and all three researchers discussed and evaluated the appropriateness of the assigned codes before the fragments were given a definitive code. One researcher reviewed the transcripts for the second interview. Individual reports were written for each case.Transcripts of the focus groups were also encoded by one researcher using the same codes. Finally, a researcher conducted an initial joint and cross-referenced analysis of the data (individual reports and data from the focus groups) to prepare a final document identifying the patterns, common issues and discrepancies in each of the study topics. The results of this analysis were presented to the advisory committee who during a two-hour session discussed the main ideas that emerged from the study and offered their points of view. The researchers discussed this document and agreed on a final version.
To promote inclusive research, the advisory committee analysed the information using the Photovoice method, which aims to facilitate the participants’ narration in a group situation, using photographs they themselves have taken. The aim is for participants to become involved in analysing their own situation, make their own contributions to the narration and jointly interpret the issues (De Lange, Mitchell,& Stuart, 2007; Mitchell,2011). Based on the work carried out using the Photovoice method a focus group was established in which the advisors discussed and agreed on a number of proposals that in their view could aid their plans for an independent life. The proposals were written on a mural. In order to agree on a priority for the proposals, the advisors voted individually for the three most relevant ones in each person’s case.
The findings clearly showed that young people with ID experience difficulty in completing secondary education and continuing their studies and that both they and their families expressed their concerns regarding their future inclusion in the labour market and emancipation (Pallisera, Fullana, Puyalto, & Vila, 2016). An assessment was made of the need to incorporate meaningful activities linked to socio-professional inclusion and how to promote guidance actions during compulsory secondary education. It was also suggested that the full participation of the young people be encouraged in decisions linked to their transition and their social network be strengthened, thus enabling them to play a greater role in the community (Pallisera, et al., 2018).The need to promote coordination between those services and professionals who offer support at school and after school was also assessed (Pallisera,Vila, & Fullana, 2014).This research confirmed that the knowledge provided by people with intellectual disability regarding their own experience is indispensable in bettering their living conditions.This assumption implies a radical transformation in how such research has traditionally been carried out so as to establish support mechanisms that give the people themselves the prominence they deserve.
The two learning points mentioned in the introduction will be discussed in the next sections. The first, gaining insight into how to plan and develop research that incorporates the voices of people with intellectual disabilities or other vulnerable groups as informants, involves asking what methods can be used by researchers to promote the participation of young people with ID as informants. The second learning point, applying social and educational strategies and methods in research to foster the participation of people with intellectual disabilities and other vulnerable groups as researchers, raises the question of what methodological strategies can be used to increase the participation of people with ID in research processes.
What methods can we use as researchers to promote the participation of young people with ID as informants?
When designing the different phases of the research and the instruments to be used, different questions were considered, each of which led us to take methodological decisions related to the selection of data collection instruments and techniques. One main issue was related to the question of what strategies can be used to help the person feel welcome and supported to express their thoughts and feelings freely.This is particularly important when working with people with ID or others that can have difficulties in communicating. Making the voices of participants heard entails much more than just talking and listening to people. It is necessary to identify strategies that allow them to express themselves, which requires diverse methods that can be adapted to different people and are less directed by the researcher than traditional research methods. The search for flexible and adaptable instruments led us to use visual methods to facilitate people with ID decision-making about what they wanted to talk about, to facilitate elicitation of their thoughts and points of view and to foster their active participation as informants. Finlay, Sheridan, McKay, and Nudzor (2010) highlighted the value of these methods in involving, empowering and giving people choices in relation to the subject matter and research design that the traditional methods cannot give. Visual methods can also be useful when the person want to express his/her emotions and feelings or when evoking experiences which are difficult to communicate through words (Bagnoli, 2009; Pink, 2006). Graphic elicitation interviews and Photovoice are two of the visual methods that we used in the research presented here.
The graphic elicitation technique includes the use of drawings, diagrams, conceptual maps and other graphic expressions produced by research participants. The use of drawing in research is a method that helps participants depict thoughts and feelings which are often difficult to express through words
(Mitchell, Theron, Stuart, Smith, & Campbell, 2011). The fact that drawing activities have little structure and no barriers or limits allows participants to communicate their personal experiences without the influence of the researchers preconceived ideas, which may unintentionally impose themselves. However, drawings and photographs in the case of photo elicitation must be accompanied by participants’ own interpretations. What is of interest is not their drawing skills, but rather how drawings are used within the context of an interview to facilitate reflection and obtain a global image of the subject matter to be researched, which takes into account the different needs and expressive styles of participants (Bagnoli, 2009). Applying these methods in the context of an interview, it is possible to open up participants’ interpretations to the different questions and construct a creative path for the interview, which responds to the meanings and associations intended by participants. In the research presented here, drawing was used as a support to oral narration in individual interviews to explore the young person’s medium-term expectations and life plan. Specifically, the young person was asked to draw, even if only in the form of a sketch, roughly how they saw themselves in ten years’ time. They were offered material and support if needed. Once the drawing was finished, the young person explained what the images meant for them in their future plan. Figure 3.1 at the end of the page shows the drawing of an 18-year-old boy. He drew the situation hoped for in ten years’ time, while explaining what his future plan consisted of. He used the first image to explain that he wants to play sport to be strong. In the second image, he reinforces this idea by showing that he would like to share this interest in running with a friend and have a partner and, with his partner, socialise with friends.The final image shows him working on tasks that involve the use of computers.This case is an example of how using graphic elicitation as a support provided the young person with the opportunity to think about their future and define their personal, relational and work-related goals.
The example on the next page (Figure 3.2) presents the use of the timeline as a support for the participant’s narrative. The aim was to help participants explain the pathway they took during the process of living independently from
Figure 3.1 The future expectations of an 18-year-old
Figure 3.2 Timeline as a support for the participant’s narrative
the family. In this case, the interviewer deemed the drawing to be true based on the oral explanation given by the interviewee. The picture is very simple but summarises the times in this process that the person considers to be key: 1. incorporation into a sheltered workshop; 2. joining a supported living programme in a shared flat; and 3. accessing a home of their own. The picture provides a clear visualisation of the pathway followed by the person and helps them reflect on it (difficulties experienced, supports received, etc.).
Photovoice involves participants using cameras to document aspects of their lives. Its use is aimed at developing peoples critical awareness of themselves and their relationship with the local community and broader society, with the goal of overcoming social injustice (Mitchell, 2011). The subsequent narration of these photographs helps the researcher to understand their point of view. Photovoice is used for the purposes of advocacy for community improvement, as well as research (Holm, 2010). Photovoice was used in this study with the aim of identifying barriers, difficulties and supports perceived in the transition to adulthood.The example presented here relates to the process to independent living. As previously mentioned ten people with ID participated as members of an advisory committee for the research. They were asked to take photos that reflected ‘things that help in the process to independent living’ and ‘things that didn’t help in this process’. Figure 3.3 shows a fragment of the mural that the participants made using photographs or drawings either made or chosen by themselves. The participants highlighted the importance of family and friends, the need to be able to carry out domestic routines, have a job and financial resources and have a partner. This debate led to ideas as to what were the barriers to an independent life. These included other people’s lack of confidence in the possibilities for people with ID, over-protection by families and professionals, problems dealing with daily routines, the fear of emancipation, the lack
Figure 3.3 Photovoice activity
of financial assistance and excessive control by professionals and relatives. The Photovoice activity was particularly useful in encouraging the participation of the advisors and highlighting the issues they considered relevant. The graphic format makes the activity more accessible. As one of the participants said: “It depends a little on what the person says or feels, with the images you can see how others see things. And you can show how you see them”.
Using visual methods facilitates the participants’ involvement and choice. This contributes to creating trusting relationships between researchers with or without a disability and for people with ID to take part in the reflection process of subjects that affect them.
Methodological strategies that can be used to increase the participation of people with ID as researchers
Since the aim of the research was to explain the problems people with disabilities face in this process we considered it necessary to incorporate an advisory committee formed of people with an intellectual disability, as previously explained. When conducting inclusive research, researchers’ experience and knowledge plays a key role in designing and creatively organising the supports necessary to allow groups considered vulnerable to feel they are a fundamental part of the research and be able to take an active part in the various stages of the research. Actions aimed at facilitating the construction and cohesion of the research group and to ensure the accessibility' of the participants in the various stages of the research are requisites needed to facilitate the conducting of research from an inclusive perspective (Strnadova, Cumming, Knox, & Parmenter, 2014).
People with disabilities participating in research endorse their need to feel part of a group that is working towards a common goal, one in which their voices are relevant (Nind & Vinha, 2014; Puyalto, Pallisera, Fullana, &Vila, 2016; The Money, Friends and Making Ends Meet Research Group & Tilly, 2012). This entails taking their needs into account when discussing the type, length, frequency' and dynamic of meetings. This results in group members progressively feeling that they' are members of a group of people working together to meet a common aim. With this in mind, we did the following to promote genuine teamwork:
- • Including an informal slot at the start of each meeting to exchange views; a small snack was also provided;
- • Using the focus group method during meetings. One of the strengths of focus groups is that it constitutes a safe environment that helps participants to gain confidence, collaborate and receive support from the rest of the group, as well as helping contrast opinions and experiences (Kaehne & O’Connell, 2010). Furthermore, it allows those people with few reading and writing skills to actively participate in the research process. One of the participants emphasised the value of this technique in helping make joint proposals: “The best thing about the focus group is that everyone can say' their opinion and together you can go further with proposals”;
- • A group review of the meeting at the end of every' session, assessing the contributions the group had made to the aims of the session and jointly' establishing the tasks to be carried out in the following meeting;
- • Detailed preparation of meetings, taking into account what had happened in the previous meeting and designing accessible support material (minutes, presentations, documents, questionnaires, etc.). This involves using images as support for the ideas presented and simple texts (short sentences, avoiding technical language). Figure 3.4 shows an example of accessible minutes from a meeting, which lists the place, date, duration and attendees at the meeting, and then the sequence of activities (1. Snack; 2. Presentation of new participants on the advisory committee; 3. Reminder of the subject of research work; 4. Signing of informed consent by' new participants; 5. Summary of work session; and 6. Summary of agreements made).
Planning and developing training actions aimed at researchers with ID is a powerful strategy to ensure inclusion (Carey, Salmon, & Higgins, 2014;
ELS PROJECTES DE VIDA INDEPENDENT DE LES PERSONES AMB DISCAPACITAT INTEL·LECTUAL
ACTA DE LA 2a REUNIÓ AMB EL COMITÈ ASSESSOR (CA)
Lloc: Facultat d’Educació i Psicologia, universitat de Girona, aula 029 i aula 341.
Data: 12 de desembre del 2013
Durada: De les 17h30 a les 20hl0.
- - 11 membres del Comitè Assessor:
- - 3 investigadores
QUÈ VAM FER?
1. Berenar i benvinguda.
2. Presentacions. Donem la benvinguda a les noves membres del Comitè: La Nuri, FAnna i la Cristina.
3. Recordatori de la recerca que fem aquest any: Es tracta duna recerca sobre la vida independent de les persones amb discapacitat intel·lectual
4. Consentiment informat. Les noves participants firmen el consentiment informat.
5. Sessió de treball. L’objectiu d'aquesta sessió és explorar els diferents models existents pel que fa al suport a la vida independent.
- 6. Acords
- • Es planteja per a la propera sessió recuperar raportació de l'Àlex: ’Què passaria si f.At$ Trias no hagués comptat amb el suport econòmic i personal que ha rebut de la seva família?'
Figure 3.4 Example of accessible minutes from a meeting
Strnadovâ et al., 2014). Nind, Chapman, Seale, andTilley (2016) note the issue of training is not neutral as it implies deciding what the aim is: is it about facilitating the learning of research-related skills so that people with ID may tackle more complex tasks throughout the process? Or is it to contribute to providing people with disabilities with a socially valued role as producers of knowledge through their participation in research processes? In this research, an educational research course was organised and aimed at members of the advisory committee. The goals were to provide participants with greater knowledge of the research processes as a way of contributing to knowledge and to provide the advisors with knowledge of the processes, tools and strategies used by our team. This was to enable them to assess their availability and motivation to participate more actively in the research.Training took place over eight work sessions and covered a range of subjects. These included the meaning of research in the socio-educational field and the stages of research. Specific attention was paid to two of the data collection methods most used, that is, interviews and focus groups as well as the use of visual methods. Training took place concurrently with the research, thus facilitating the application of some of the course subjects into the transition to adulthood and independent living (Fullana, Pallisera, Català, & Puyalto, 2017).Table 3.2 shows the content of one of the sessions.
Strategies were used to support the participation of researchers with disabilities in the data analysis phases. Information analysis is a cross-disciplinary process carried out at various stages of a research project, and it has different aims. At the beginning of (and during) the research, it is used to compile data about the topic studied. Once data is compiled, it is used to further the significance of aspects of the data and establish links with the results of other research. Once research is finished, it is used to select and organise the information needed for the dissemination of results. To guarantee the participation of researchers with disabilities, they should be aided through the choice and design of accessible materials, which should be progressively sequenced before the design of
Table 3.2 Educational research course training session
Session 3:The interview
Ascertain key aspects in preparing an individual interview.
Identify good and bad interview practice.
- - Debate based on viewing extracts from a television interview with a person with Down’s syndrome who lives independently with their partner. Questions posed included: how does the person interviewed live? What other life choices do people with ID currently have?
- - Preparation of an interview script, in groups of three to four people and with the support of
a member of the research team in each group. The subjects were independent living, and the options of people with ID in this area.
- - Role-playing, in which the participants practiced the prepared interview.
- -Analysis and discussion of the role-playing, highlighting strengths and problems that arose.
comprehensible activities.Table 3.3 on the next page shows some of the actions undertaken to facilitate participation of researchers with disabilities.
Throughout the entire process adaptations were considered based on the access needs of the various participants.The number of activities based on reading and writing were minimised and individual support was provided for those who needed it. Each session was planned taking into account the process and results of the previous session and the participants’ satisfaction, as well as their preferences regarding the activities and methods used. Feedback from research participants showed high levels of satisfaction and positive experiences with regard to the learning acquired as researchers, as well as an improvement in their social role (Fullana et al., 2017; Puyalto et al., 2016).