Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2016, 29, 146–159
Doing Research Together: A Study on the Views of Advisors with Intellectual Disabilities and Non-Disabled Researchers Collaborating in Research Carol Puyalto, Maria Pallisera, Judit Fullana and Montserrat Vila Institute of Educational Research, University of Girona, Girona, Spain
Accepted for publication 5 September 2014
Background Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Materials and Methods Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis.
Introduction In recent years, there has been a significant increase in the number of inclusive studies carried out (Brooks & Davies 2008; Young & Chesson 2008; Tuffrey-Wijne & Butler 2010; Nind & Vinha 2014), and the growing body of literature shows the challenges facing disability research in terms of the design and implementation of research conducted inclusively. The inclusive research model (Walmsley 2001, 2004; Walmsley & Johnson 2003) argues that people with relevant experience in relation to the studied topic should be included in the research and their participation facilitated in all phases of it. There has been wide debate regarding the relationship between researchers with and without disabilities and whether their participation should be identical in different phases of research (Ward & Simons 1998; © 2015 John Wiley & Sons Ltd
Results The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. Conclusions The study provides a better understanding of inclusive research processes by taking into account participants’ views. Keywords: inclusive research, intellectual disability, participatory research, research with people with intellectual disability
Walmsley & Johnson 2003; Abell et al. 2007; Kramer et al. 2011; Bigby et al. 2014). Another theme for debate is related to the support that people with intellectual disabilities may need to participate as researchers. Kiernan (1999) asked how equality of participation might be ensured between researchers with and without disabilities when it is the latter who provide support for the former when conducting research. Other authors, such as Williams et al. (2005) and McClimens (2008), suggest the complexity of the power relations established when researchers with and without disabilities collaborate. In part, this is due to researchers with intellectual disabilities’ needing support, which leads to the challenge for non-disabled researchers of providing them with this support without crossing the line of making decisions for them. In relation to this, there is a need to design and implement training 10.1111/jar.12165
Journal of Applied Research in Intellectual Disabilities
processes in research aimed at people with disabilities who participate as researchers so as to ensure the rigour and quality of research (Ward & Simons 1998; Walmsley & Johnson 2003; Walmsley 2004; Bigby & Frawley 2010; Strnadova et al. 2014). An analysis of these issues is essential to decision making in the design and development of research conducted inclusively; however, this process cannot ignore the analysis of opinions and views of those people who have been actively involved in such research. Such opinions and views regarding what participants have learnt and what participation has meant to their personal careers are critical to a comprehensive understanding of the experiences undertaken and suggestions for future improvement (Flood et al. 2012). The aim of this study is therefore to explore the views of people with and without disability who have worked together as part of an inclusive research process.
Research on the views and experiences of people who have participated in inclusive research processes There are different ways for people with disabilities to participate in research, each of which generates different roles and can therefore lead to different forms of learning and experiences (Ward & Simons 1998; Walmsley & Johnson 2003; Bigby et al. 2014). Bigby et al. (2014) review the peer-reviewed literature on inclusive research and identify three main approaches: the advisory approach, the leading and controlling approach and collaborative groups. In the first, people with intellectual disabilities participate in the research as advisors or counsellors. In the second, people with intellectual disabilities exercise control in initiating, leading and conducting their own research on topics that are important to them. And in the third, people with and without disabilities work together on a research process in which each contributes their skills and experience to generate new knowledge together. Although numerous inclusive studies have been conducted in recent years, very few have focused solely on exploring what it meant to people with intellectual disabilities to participate in research as advisors. This is the case with Abell et al. (2007), who describe a research group project (the Burton Street Project) comprising of people with intellectual disabilities and researchers without disabilities. In Butler et al. (2012), four researchers (two with intellectual disabilities) who contributed to research on © 2015 John Wiley & Sons Ltd, 29, 146–159
147
people with intellectual disabilities’ experiences of cancer provide their views on the experience. In Flood et al. (2012), three people with disabilities who collaborated on research into abuse in the UK speak about what it meant for them to do research and what they learnt. White & Morgan (2012) describe the participation of a person with intellectual disabilities in research conducted in Australia on the everyday literacy of people with intellectual disabilities. In the study by Deguara et al. (2012), members of an advisory committee (AC) charged with analysing the interests of people with disabilities in relation to independent living contribute their experiences as researchers. In The Money, Friends and Making Ends Meet Research Group & Tilly (2012), a group of people with intellectual disabilities analyse problems related to a lack of financial resources and support, considering what they have learnt from doing research together and what it was like being in a research group. These works all share the common theme of a non-disabled researcher and/or support staff providing support for people with intellectual disabilities in writing the paper, although authorship is shared. And finally, the study by Nind & Vinha (2014) provides information on the opinions and views of researchers with and without disabilities, support staff, academics researching disability and policymakers regarding their participation in inclusive research. A review of research on the views of participants with intellectual disabilities in inclusive research reveals that their comments on the experience refer to the following themes: the positive aspects of the experience, the negative aspects and what they have learnt from it. Below we refer to each point in turn: • Positive aspects of the experience. People with intellectual disabilities emphasize the feeling of forming part of a group (The Money, Friends and Making Ends Meet Research Group & Tilly 2012; Nind & Vinha 2014) and even establishing friendships among participants beyond the research context (Flood et al. 2012). Butler et al. (2012) highlight their satisfaction in having successfully performed research tasks and worked collaboratively with researchers. Other positive aspects relate to the feeling that their opinions are valued (Abell et al. 2007; Nind & Vinha 2014), that they are helping others (Flood et al. 2012) or that others are learning from them (Nind & Vinha 2014). Further aspects they highlight are enhanced confidence and personal independence (Flood et al. 2012), organization in their lives (The Money, Friends and Making Ends Meet
148 Journal of Applied Research in Intellectual Disabilities
Research Group & Tilly 2012), and increased motivation to do activities outside the home (Flood et al. 2012). • Negative aspects of participating in research. Participants with intellectual disabilities also note some difficulties, such as concentrating at meetings (The Money, Friends and Making Ends Meet Research Group & Tilly 2012), public speaking in the group, especially in the early stages of research (Flood et al. 2012), and excessive time spent giving explanations and managing disagreements between group members (Abell et al. 2007). • What they have learnt from the experience. People with intellectual disabilities highlight several skills, including, for example, the use of recording equipment or cameras (in Flood et al. 2012; White & Morgan 2012), the use of computers and the Internet (Flood et al. 2012), and different forms of disseminating the research (Abell et al. 2007; Flood et al. 2012; White & Morgan 2012). In White & Morgan (2012), Emma, the participant with a disability, states that the experience allowed her to understand what it means to do research. And in the experiences carried out by The Money, Friends and Making Ends Meet Research Group & Tilly (2012) and Flood et al. (2012), participants with intellectual disabilities highlight skills related to teamwork. Few studies have focused on the views of researchers without disabilities with regard to the experience of working with people with intellectual disabilities in research. In Abell et al. (2007), two researchers considered that they experienced some pressure to participate equally in the various stages of research, when in other research projects tasks were distributed according to the skills and availability of the various participants. The researchers point out that, in contrast to research conducted inclusively, most articles do not explain who did what and how it was done, it being accepted that several different authors contribute in different ways. Although in research projects conducted inclusively some researchers consider what has been learnt (Abell et al. 2007; Garbutt et al. 2009; Butler et al. 2012) and others document the research process by collecting participants’ views on different stages of the process in which they participated (O’Brien et al. 2014), no research has been found which aimed to provide an in-depth analysis of participants’ views and learning regarding the actual experience of participating in inclusive research.
Materials and Methods The aim of the study presented in this article was to determine the opinions and views of members of an AC composed entirely of people with intellectual disabilities and those of researchers without disabilities on the experience of participating in research on transition to adulthood. The function of the committee was to advise and work together with the research team in different phases of the study. To facilitate understanding of the text, the AC members will henceforth be referred to as ‘advisors’ and the non-disabled researchers as ‘researchers’. The advisors collaborated on the research project ‘The transition to adulthood and working life of young people with intellectual disability from an inclusive perspective: identifying problems, good practices and proposals for an improvement plan’. One part of this project was a case study aimed at obtaining information regarding the challenges and barriers facing young people with intellectual disabilities in their transition to adulthood. The case study was conducted in three phases from October 2012 to June 2013, the aims of which are detailed below. Phase 1: to obtain information regarding the educational pathways and current status of participants based on individual interviews with them and their families. Visual methods were used (drawings by participants) to stimulate the narrative. Phase 2: to gather further insight into the results of phase 1 by conducting two focus groups with participants, applying the photovoice technique to one of them. Phase 3: to conduct an in-depth review of the opinions of a group of young people participating on a transition to adulthood course regarding their current situation and aims for the future. This involved individual interviews with each of the young people, using visual methods as support, in this case a drawing made by the participant. In accordance with the principles of the inclusive research model, the authors decided to conduct this case study with the collaboration of people with intellectual disabilities. An AC of people with intellectual disabilities was set up to advise the research team during different phases of the case study. Six meetings of the AC were held throughout the study period, with great care taken in their planning and execution. The meetings entailed deciding upon relevant topics to include in the data collection instruments and analysing and interpreting the information obtained. © 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
Table 1 describes the objectives of each meeting and the contributions by the AC in developing the case study. As this represented a first collaborative research experience for both the members of the AC and the researchers, it was deemed opportune to perform an indepth analysis of what it meant to them in terms of learning and significance. Research was therefore conducted to obtain information regarding their opinions, perceptions and assessment of the experience, and this comprises the focus of the research presented in this article.
Participants To select AC participants, the researchers contacted five local centres working on social and workplace integration for people with intellectual disabilities. The research was explained to the professionals at these centres, and their help was requested in selecting two people to join the AC. The requirements were that: they were people with intellectual disabilities; they had sufficient autonomy to travel to the place where the meetings were to be held; they had adequate skills to participate in group discussions of an anticipated 2-h duration;
149
they had sufficient comprehension and communication skills. Throughout the selection process, the researchers were responsible for ensuring that the committee had the right balance of men and women and different age groups and that participants had different personal experiences in the various areas studied in transition to adulthood (educational and employment pathways, emancipation and independent living, among others). Once the centres had made initial contact with selected participants and they had shown an interest in participating, the research team contacted them directly by means of a letter written in plain language and the first meeting was convened. At this meeting, participants were informed of the aims of the research project, the intended functions of the AC and the expected frequency of meetings. The 10 participants then agreed to sign the informed consent form. The working group therefore comprised 10 advisors and five researchers. Participants are described in Table 2.
Instruments The following instruments were used: an initial questionnaire for advisors and a separate one for researchers; three focus groups with researchers; three
Table 1 Meetings held between the AC and researchers Meeting
Date
Aims
Contributions to case study
AC1
08/11/12
Constitution of the AC. Identify the main challenges in the transition process to adult life and the support received
AC2
07/02/13
AC3
14/03/13
AC4
18/04/13
AC5
09/05/13
AC6
18/07/13
Analysis and discussion of the data obtained from the interviews researchers conducted with young people in the case study Analysis and discussion of the data obtained from the focus group conducted with young people in the case study Analysis of challenges and support received in the transition process through photographs taken by the advisors themselves Jointly draft a conference presentation to explain the processes involved in the work undertaken Analyse the role of work in the life projects of participants in the case study
The discussion with advisors helped to determine their personal opinions and experiences of the transition process. The themes highlighted by the advisors were introduced and treated as a priority in designing the instruments used in the case study Advisors’ comments on the narratives of young people helped to identify the strengths and weaknesses of each theme. It also helped provide nuances for these narratives based on the advisors’ different points of view
AC, advisory committee. © 2015 John Wiley & Sons Ltd, 29, 146–159
Review the process undertaken and what it meant to participants Take an in-depth look at the role of work promoting social inclusion and the strengths and weaknesses of training processes aimed at facilitating the inclusion of young people
150 Journal of Applied Research in Intellectual Disabilities
Table 2 Participants demographics Advisors
Gender
Age
Status
A1 A2 A3 A4 A5 A6 A7 A8 A9 A10
F M F M M M M F M M
40 23 28 25 34 42 34 27 54 34
Works Works Works Works Works Works Works Works Works Works
part-time in an ordinary company. Lives with her mother. Has a partner part-time in an ordinary company. Lives with his parents at an Employment and Integration Service (EIS). Lives with her parents. Has a partner at a Sheltered Workshop (SW) and lives alone. Has a partner at a SW. Lives with a work colleague in a group home at a SW. Lives with his family full-time in a public institution. Lives with his parents full-time in a public institution. Lives with her parents at a SW. Has a daughter living independently and lives alone at a SW. Has a daughter living with her mother. Lives in a group home
Researchers
Gender
Age
Status
R1 R2 R3 R4
F F F F
47 48 50 25
R5
F
30
Work full-time at the university as a lecturer. Research focused on educational and social inclusion of people with disabilities. They prioritize the use of qualitative methods to deepen phenomena by obtaining information from principal participants (professionals, people with disabilities, families) PhD grant holder, working towards her PhD degree in the field of social inclusion of people with intellectual disabilities Works part-time in this research
focus groups with advisors; and one focus group with members of the AC and researchers together. The separate focus groups were carried out at regular points throughout the period of study, while the joint focus group formed part of the final meeting. The initial questionnaire collected the first impressions of participants regarding the experience of participating jointly in a research project. The questionnaire addressed to the members of the AC used open and closed questions in plain language accompanied by visual aids to facilitate understanding. Focus groups have been widely used in social research. Their potential uses include facilitating interaction between participants and discussing and contrasting opinions and experiences (Krueger & Casey 2000). Focus groups foster the inclusion and empowerment of social services users and, in particular, people with intellectual disabilities (Kaehne & O’Connell 2010). According to Cambridge & McCarthy (2001) and Barr et al. (2010), the focus group is a non-threatening environment that helps participants with intellectual disabilities gain confidence through the support they receive from other participants. Furthermore, it allows certain people with low literacy skills to participate actively in the research process. In this research, focus groups helped to encourage discussion and debate among the members of the AC, and between them and
the researchers. Focus groups were also used to explore the opinions and views of researchers regarding the meetings they had participated in. Table 3 lists the different research topics and the instruments used to obtain information on them. Questionnaires protocols and focus groups scripts are in Appendix 1.
Procedure Before starting the research, researchers applied for and were granted ethics approval. Both University of Girona and MINECO (Spanish Public Science Foundation) authorized the research (ref. EDU201122945). The AC met with the research team at the university on a monthly basis. Each meeting began with the introduction of an aim and related this to the research being undertaken. In accordance with the ethical guidelines of the Spanish Psychological Society, informed consent was sought from participants to record the meetings, which were later transcribed in full. The minutes of each meeting were drawn up in plain language that summarized the issues raised. At the beginning of each meeting, members of the AC received a portfolio containing the minutes in plain language along with other materials related to the content to be discussed in the meeting. © 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
151
Table 3 Instruments and topics Advisors
Researchers Focus group
Focus group
Advisors and researchers Focus group
Topics
Questionnaire
Participants’ views on aims and content of the meetings Participants’ views on their expectations with regard to participating in research Participants’ views on the space where meetings were held and their length Participants’ views on the researchers’ roles during the meetings Participants’ views on the accessibility of the research process Participants’ views on the advisors’ participation in meetings Advisors’ views on their contributions to the research Researchers’ views on the quality of advisors’ contributions throughout the research project Participants’ proposals for improvement Participants’ views on learning from the experience
X X
X
X X
X
X
X
X
X
X
X X X
X X X X
X X X
X X X
X
X
X X X X X
Following each meeting, the research team met to assess it in two ways: firstly, by analysing the information obtained in relation to the proposed aims and assessing how this information would be taken into consideration in the case study; then, in terms of its organization, functioning, dynamics, materials and strategies used, among other aspects, so as to propose improvement strategies for following meetings. The views and opinions of advisors were collected during the meetings held between the AC and the researchers. First, the initial questionnaire for researchers was prepared and administered and four questionnaires were collected from AC1. The initial questionnaire aimed at advisors was administered at the end of AC2, bearing in mind that at this time participants would have more information to express their views. During administration, the researchers offered them any support they required. Seven questionnaires were obtained. Focus groups with the researchers took place after the meetings AC2, AC3 and AC4. They were recorded using a voice recorder and lasted around 45 min on average. Focus groups with advisors took place after the meetings AC2 and AC3. Members of the AC were asked to assess the meeting that had just taken place. To do this, the same themes were addressed as in previous instruments, giving participants the freedom to discuss those they considered most relevant. All focus groups were recorded using a voice recorder and a video camera to facilitate further analysis.
Finally, a focus group was held with all participants (10 advisors and five researchers). For this, the entire AC5 meeting was dedicated to jointly discussing the inclusive research experience. This focus group lasted 2 h and was recorded using a voice recorder and a video camera.
© 2015 John Wiley & Sons Ltd, 29, 146–159
X
Questionnaire
X
X X
Data analysis A thematic analysis was conducted of advisors and researchers’ views. Transcripts were analysed by combining structural and descriptive coding (Salda~ na 2009). The structural codes were based on the topics addressed by the different instruments. The data analysis process was as follows: (i) after one researcher transcribed all the information, two researchers independently analysed the questionnaires and transcripts of the group interviews and focus groups, using the initial codes. Initial codes were established by the researchers based on the topics addressed by the different instruments (see Table 3). New codes were identified from the data and added to the initial list. These new codes consisted of short sentences summarizing the main theme of a piece of data (descriptive coding). This led to a second list consisting of the initial codes plus those arising from the analysis; (ii) with this second list of codes, the same two researchers compared their work and agreed on the final codes. All of the information was encoded using these final codes; (iii) two members of the team
152 Journal of Applied Research in Intellectual Disabilities
Table 4 Themes and categories Themes
Categories
1. Advisors’ views on what it means to them to form part of the AC
What we have learnt Collaborating as experts Being able to express ourselves freely The value of advisors’ contributions to the research Professional challenges Sharing research work Advisors’ proposals Researchers’ proposals
2. Researchers’ views on what the experience of conducting inclusive research with the AC means to them 3. Proposals for improvement
AC, advisory committee.
reviewed them together and then proceeded to agree on categories. Using these categories, the information was reorganized and the final categories established (see Table 4); (iv) a report was drawn up for each category to explore the relationships between codes. Four researchers from the team reviewed the reports to detect patterns, common themes and contrasts between the data in each of the categories (Coffey & Atkinson 1996).
Results Below are the results of the final themes, organized as follows: (i) views of advisors regarding what it means to them to form part of the AC; (ii) views of researchers on what the experience of conducting inclusive research with the AC means to them; (iii) suggestions for improvement. Fragments of segments are included to illustrate interpretations, indicating the source and the instrument used1 and the meeting in which the participant made the contribution.2
Advisors’ views on what it means to them to form part of the AC In relation to knowledge acquired, the advisors suggested that collaborating in research has enabled them to acquire knowledge related to the object of study. One theme that generated participants’ interest was knowing what young people who are transitioning
1
The following acronyms are used to cite instruments: IQ for the initial questionnaire; FG for the focus group. 2 The acronyms used in Table 1 are used to cite the meetings where participants made their contributions: AC1 for the first meeting, AC2 for the second, and so on.
to adulthood think and reflecting on this from their own experience. Interesting reflections are made by both the older and younger participants regarding differences between the two generations when facing the transition to adulthood: For us it was more difficult to adapt to society than for the next generation. I have not had the support that Advisor 2 has had. And Advisor 9 has not had even 30% of what Advisor 2 or younger people have had.Advisor 6 (42 y.o.) (FG/AC5)
My opinion is the same as that of Advisor 8, I’ve had the opportunity to listen to the views of older people and compare them to those of young people and I see quite a significant difference (. . .). The older ones see things very differently, and the younger ones don’t even think about it.Advisor 2 (23 y.o.) (FG/AC5) In addition, two advisors make an interesting contribution regarding how working together with the researchers allowed them to overcome shyness and gain confidence when speaking in front of the other participants (FG/AC5). Secondly, there is consensus among all of the advisors regarding their satisfaction in working with the university and helping to conduct research on transition to adulthood. (FG/AC3). For me it’s an honour to come here to the University because today I told my parents: – ‘I’m going to the University!’ – ‘To do what?’ my parents asked – ‘To do research work, they want my opinion’, and I felt like an important man. Going to the University, who would have thought © 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
it! My parents were very surprised that I was going to the University. Because coming (here) is an honour, and having people count on you is an honour (. . .).Advisor 9 (FG/AC5) That said, however, participating as experts at the university represented a challenge for some participants. In the final meeting, two advisors confessed to having felt insecure at first. Advisor 4 highlights the importance of feeling supported by the other participants to overcome insecurities at the beginning of the research process (FG/AC5). Lastly, one fact highlighted by the advisors is the opportunity they had to express themselves freely. Seven of them said they felt comfortable with the people in the working group. In fact, in the initial questionnaire, Advisor 1 highlights the importance of sharing opinions and being able to express herself. During the final meeting, the same person considers that the AC resembled a therapeutic space where it was possible to vent feelings and say what you think without feeling judged (FG/AC5). Five advisors agreed that feeling listened to and respected by both the other members and the researchers made them feel secure enough to talk about their own experiences. In fact, during meetings, advisors spontaneously expressed their grievances regarding discrimination experienced by people with disabilities: Look, one important thing is the social and family environment (. . .) There is a lot of scepticism about disability, there are many things people don’t know about us. When people talk about disability they say ‘this guy can’t do things’, they already have the preconceived idea that people with disabilities are unable. (. . .) It’s like a barrier.Advisor 6 (FG/AC5)
Researchers’ views on what the experience of conducting inclusive research with the AC means to them The researchers were unanimous in considering that the advisors contributed decisively to instrument design and data analysis, helping prioritize the issues that are most meaningful to them. This was deemed to have enriched the research process and the quality of results (IQ/AC1; FG/AC5). The five researchers agreed from the outset that the fact of having access to the experiences of people with disabilities who have made the transition to adulthood © 2015 John Wiley & Sons Ltd, 29, 146–159
153
enriched the subject of study while providing new learning related to conducting inclusive research: strategies related to the design of accessible materials, organizing meetings and providing support (FG/AC2; FG/AC3). . . . strategies about thinking how you can make the documentation more accessible, and not only how you do it but how you present it, how you structure the information, how you transmit it, how you return it, reports (. . .).Researcher 1 (FG/AC2) It was not without challenges, however, including reflecting on and discussing appropriate strategies for generating discussion in the meetings, taking decisions about which materials and methods to use, and perhaps the most important, being open to change and rethink case study instruments according to contributions from advisors throughout the research process. From the first meeting onwards, the five researchers agreed to share out different tasks to make the meetings dynamic and facilitate the participation of advisors. Although these tasks were valued positively by all of the researchers (IQ/AC1/GI/AC2/AC3/AC4), as Researcher 1 notes, it is important not to intervene too much in meetings and try to allow the advisors to progress naturally (IQ/AC1). For Researcher 4, it also represented a challenge to know the extent to which members of the AC were being offered the necessary support to actively participate in meetings (FG/AC3). As two researchers put it, these challenges provoked initial insecurity, but this decreased as the research progressed (FG/AC5). Lastly, sharing research work with the AC led the researchers to make various reflections. Firstly, four of the researchers stress the importance of this experience to them as their first participation in inclusive research (FG/AC2/AC3 and FG/AC5). As three researchers said, this meant being very attentive from the very beginning with regard to how the meetings progressed (IQ/AC1), and detecting and discussing the implications of conducting research from an inclusive perspective (FG/ AC2). In a broader sense, the researchers all agreed that this experience represented a qualitative leap forward in the way they conduct research.
Proposals for improvement During the final meeting, the AC formulated a series of proposals for the future. One proposal that motivates them is to disseminate the experience they have been
Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2016, 29, 146–159
Doing Research Together: A Study on the Views of Advisors with Intellectual Disabilities and Non-Disabled Researchers Collaborating in Research Carol Puyalto, Maria Pallisera, Judit Fullana and Montserrat Vila Institute of Educational Research, University of Girona, Girona, Spain
Accepted for publication 5 September 2014
Background Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Materials and Methods Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis.
Introduction In recent years, there has been a significant increase in the number of inclusive studies carried out (Brooks & Davies 2008; Young & Chesson 2008; Tuffrey-Wijne & Butler 2010; Nind & Vinha 2014), and the growing body of literature shows the challenges facing disability research in terms of the design and implementation of research conducted inclusively. The inclusive research model (Walmsley 2001, 2004; Walmsley & Johnson 2003) argues that people with relevant experience in relation to the studied topic should be included in the research and their participation facilitated in all phases of it. There has been wide debate regarding the relationship between researchers with and without disabilities and whether their participation should be identical in different phases of research (Ward & Simons 1998; © 2015 John Wiley & Sons Ltd
Results The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. Conclusions The study provides a better understanding of inclusive research processes by taking into account participants’ views. Keywords: inclusive research, intellectual disability, participatory research, research with people with intellectual disability
Walmsley & Johnson 2003; Abell et al. 2007; Kramer et al. 2011; Bigby et al. 2014). Another theme for debate is related to the support that people with intellectual disabilities may need to participate as researchers. Kiernan (1999) asked how equality of participation might be ensured between researchers with and without disabilities when it is the latter who provide support for the former when conducting research. Other authors, such as Williams et al. (2005) and McClimens (2008), suggest the complexity of the power relations established when researchers with and without disabilities collaborate. In part, this is due to researchers with intellectual disabilities’ needing support, which leads to the challenge for non-disabled researchers of providing them with this support without crossing the line of making decisions for them. In relation to this, there is a need to design and implement training 10.1111/jar.12165
Journal of Applied Research in Intellectual Disabilities
regarding what it means, in terms of theory and practice, to do research on disability from an inclusive perspective. In this respect, for the researchers, this experience has involved learning how to facilitate the participation of a group of people, reflect on the limits of their intervention and, on the basis of this, make decisions regarding the type and intensity of support to provide for participants with intellectual disabilities. The research team values the experience carried out as a necessary step forward as a team in conducting research on disability in which people with disabilities take a more active role by participating in different stages of the process. In the light of the results obtained throughout the research process, the constitution of an AC seems to be an appropriate strategy for advancing the development of inclusive research from a collaborative perspective: firstly, because it allows people with intellectual disabilities to learn skills related to research and the critical role they can play in the creation of knowledge on disability; secondly, because it allows researchers to learn skills related to the design and development of inclusive research. But above all, because the establishment of an ongoing dynamic of collaborative work between researchers and advisors helps transform current practices in disability research, we moved towards more honest research in which people with disabilities acquire the necessary central role. According to the key principles of inclusive research, people with intellectual disabilities should be involved from the beginning of the research. Ideally, they should determine the topic, focus and aims of the research. In this study, focus and aims were established by the researchers prior to the creation of the AC. However, the commitment and active participation of the advisors were crucial throughout the investigation as they contributed substantially to its development and results. In the experience referred to here, control of the research project remained mostly in the hands of the researchers, although at times part of this control was ceded to the advisors as they made decisions related to instrument design and data analysis. Undoubtedly, carrying out research in which participants with intellectual disabilities are able to play a greater role in decision making is the main challenge the researchers faced. To this end, and taking into account guidance from various authors (Ward & Simons 1998; Walmsley & Johnson 2003; Walmsley 2004; Bigby & Frawley 2010), this past year an educational research training programme has been undertaken with the advisors as the recipients. The purpose of this was to provide the © 2015 John Wiley & Sons Ltd, 29, 146–159
155
advisors with greater knowledge of the processes, instruments and basic strategies used in the research group, and to assess their availability and motivation to play a more active role in future studies. As for researchers, the development and evaluation of this course provided fundamental insights about how to do research inclusively.
Acknowledgment We are immensely grateful to the members of the Advisory Committee who collaborate with us in the research.
Funding This work was supported by the MINECO (Spanish Public Science Foundation) (grant number EDU201 122945). The funding bodies have not imposed any restrictions on free access to or publication of the research data.
Conflict of interest No conflict of interest has been declared.
Ethics This manuscript is submitted to the JARID to be considered for publication. The manuscript has not been published elsewhere, is not currently submitted elsewhere and is significantly different from other manuscripts that the authors have submitted elsewhere. The authors state that in each stage of the research, the ethical guidelines of the WMA Declaration of Helsinki and of the Spanish Psychological Society have been followed. All the authors have contributed to, seen, and approved of the manuscript and agree to the order of authors as listed on the title page.
Correspondence Any correspondence should be directed to Maria Pallisera, Institute of Educational Research, University of Girona, C/St. Domenec, 9, 17071 Girona, Spain (e-mail: [email protected]).
References Abell S., Ashmore J., Beart S., Brownley P., Butcher A., Clarke Z., Combes H., Francis E., Hayes S., Hemmingham I., Hicks
156 Journal of Applied Research in Intellectual Disabilities
K., Ibraham A., Kenyon E., Lee D., McClimens A., Collins M., Newton J. & Wilson D. (2007) Including everyone in research: the Burton Street research group. British Journal of Learning Disabilities 35, 121–124. Barr O., McConkey R. & McConaghie J. (2010) Views of people with learning difficulties about current and future accommodation: the use of focus groups to promote discussion. Disability & Society 18, 577–597. Bigby C. & Frawley P. (2010) Reflections on doing inclusive research in the “Making Life Good in the Community” study. Journal of Intellectual & Developmental Disability 35, 53–61. Bigby C., Frawley P. & Ramcharan P. (2014) Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities 27, 3–12. Brooks M. & Davies S. (2008) Pathways to participatory research in developing a tool to measure feelings. British Journal of Learning Disabilities 36, 128–133. Butler G., Cresswell A., Giatras N. & Tuffrey-Wijne I. (2012) Doing it together (DM Special Issue). British Journal of Learning Disabilities 40, 134–142. Cambridge P. & McCarthy M. (2001) User focus groups and Best Value in services for people with learning disabilities. Health and Social Care in the Community 9, 476–489. Coffey A. & Atkinson P. (1996) Making Sense of Qualitative Data: Complementary Research Strategies. Sage Publications, Thousand Oaks, CA. Deguara M., Jelassi O., Micallef B. & Callus A. (2012) How we like to live when we have the chance. British Journal of Learning Disabilities 40, 123–127. Flood S., Bennett D. & Melsome M. (2012) Becoming a researcher. British Journal of Learning Disabilities 41, 288–295. Garbutt R., Tattersall J., Dunn J. & Boycott-Garnett R. (2009) Accessible article: involving people with learning disabilities in research. British Journal of Learning Disabilities 38, 21–34. Kaehne A. & O’Connell C. (2010) Focus groups with people with learning disabilities. Journal of Intellectual Disabilities 14, 133–145. Kiernan C. (1999) Participation in research by people with learning disability: origins and issues. British Journal of Learning Disabilities 27, 43–47. Kramer J. M., Kramer J. C., Garcıa-Iriarte E. & Hammel J. (2011) Following through to the end: the use of inclusive strategies to analyse and interpret data in participatory action research with individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 24, 263–273. Krueger R. & Casey M. A. (2000) Focus Groups: A Practical Guide for Applied Research. 3rd edn. Sage Publications, Thousand Oaks, CA.
McClimens A. (2008) This is my truth, tell me yours: exploring the internal tensions within collaborative learning disability research. British Journal of Learning Disabilities 36, 271–276. Nind M. & Vinha H. (2014) Doing research inclusively: bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities 42, 102–109. O’Brien P., McConkey R. & Garcıa-Iriarte E. (2014) Coresearching with people who have intellectual disabilities: insights from a National Survey. Journal of Applied Research in Intellectual Disabilities 27, 65–67. Salda~ na J. (2009) The Coding Manual for Qualitative Researchers. Sage Publications, Los Angeles, CA. Strnadova I., Cumming T. M., Knox M., Parmenter T. & Welcome to Our Class Research Group (2014) Building an inclusive research team: the importance of team building and skills training. Journal of Applied Research in Intellectual Disabilities 27, 13–22. The Money, Friends and Making Ends Meet Research Group & Tilly L. (2012) Having friends – they help you when you are stuck from money, friends and making ends meet research group. British Journal of Learning Disabilities 40, 128–133. Tuffrey-Wijne I. & Butler G. (2010) Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expectations 13, 174–184. Walmsley J. (2001) Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society 16, 187–205. Walmsley J. (2004) Inclusive learning disability research: the (non-disabled) researcher’s role. British Journal of learning Disabilities 32, 65–71. Walmsley J. & Johnson K. (2003) Inclusive Research with People with Learning Disabilities: Past, Present and Future. Jessica Kingsley Publishers, London. Ward L. & Simons K. (1998) Practising partnership: involving people with learning difficulties in research. British Journal of Learning Disabilities 26, 128–131. White E. L. & Morgan M. F. (2012) Yes! I am a researcher. The research story of a young adult with Down syndrome. British Journal of Learning Disabilities 40, 101–108. Williams V., Simons K. & Swindon People First Research Team (2005) More researching together: the role of nondisabled researchers in working with People First Members. British Journal of Learning Disabilities 33, 6–14. Young A. & Chesson R. (2008) Determining research questions on health risks by people with learning disabilities, carers and care-workers. British Journal of Learning Disabilities 36, 22– 31.
© 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
Appendix 1 Questionnaires protocols and focus groups scripts. (1). Questionnaire for advisors protocol. 1a) WHAT DO YOU THINK ABOUT DISCUSSING TOGETHER ABOUT THE EXPERIENCES OF YOUNG PEOPLE WITH INTELLECTUAL DISABILITIES?
EXCELLENT
WELL
REGULAR
BAD
1b) WOULD YOU LIKE TO ADD SOMETHING?
2a) WHAT ABOUT THE PLACE WHERE WE MEET? AND THE LENGTH OF THE MEETINGS?
EXCELLENT
WELL
REGULAR
BAD
2b) WOULD YOU LIKE TO ADD SOMETHING?
3a) HAVE YOU PARTICIPATED IN THE MEETING AS MUCH AS YOU WANTED ?
EXCELLENT
WELL
REGULAR
3b) WOULD YOU LIKE TO SAY ANYTHING MORE?
© 2015 John Wiley & Sons Ltd, 29, 146–159
BAD
157
158 Journal of Applied Research in Intellectual Disabilities
4a) WHAT DO YOU THINK ABOUT THE WORK OF THE FACILITATORS?
EXCELLENT
WELL
REGULAR
BAD
4b) WOULD YOU LIKE TO RECEIVE MORE SUPPORT?
5a) WHAT DO YOU THINK ABOUT THE MATERIALS GIVEN TO YOU?
Minutes
EXCELLENT
InformaƟon
WELL
REGULAR
BAD
5b) WHAT DO YOU THINK ABOUT THE COMPUTER PRESENTATION?
EXCELLENT
WELL
REGULAR
BAD
5b) WOULD YOU LIKE TO HAVE SOME OTHER MATERIALS? WHICH ONE
© 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
159
6) DO YOU HAVE SOME PROPOSAL TO IMPROVE THE NEXT MEETINGS?
THANK YOU VERY MUCH!
(2). Questionnaire for researchers protocol 1. What do you think about discussing together with advisors about the transition to adult life of people with intellectual disability? 2. What do you think about the place where we meet and the length of the meeting? 3. Would you describe the participation of the advisors (interaction level and participation level) during the first meeting? 4. Do you think it is possible to improve the participation of the advisors? Why? How? 5. What do you think about the impact of the advisors’ contributions? 6. Do you think the materials and support given to the advisors have contributed to the good development of the meeting? 7. How could we improve the accessibility of the meetings? 8. Do you have some proposal to improve the next meetings? Thank you! (3). Focus groups with advisors and Focus groups with researchers script. A common script was prepared for the different meetings, and the script was adapted according to the dynamic of each group. The script was as follows: • Views on aims an content of the meeting
© 2015 John Wiley & Sons Ltd, 29, 146–159
•
Views on the development of the meeting (place, length. . .) • Views on the researchers roles during the meeting • Views on the accessibility of the research process • Views on the advisors’ participation in the meetings • Participants’ proposals for improvement • Advisors’ views on their contributions to the research (only in focus group with advisors) • Researchers’ views on the quality of advisors’ contributions throughout the research project (only in focus groups with researchers) (4). Focus group with advisors and researchers script. • Views on the development of the meeting (place, length. . .) • Views on the researchers roles during the meeting • Views on the accessibility of the research process • Views on the advisors’ participation in the meetings • Participants’ views on the quality of advisors contributions throughout the research project. • Participants’ views on what they have learnt from the experience: O To be a member of an advisory committee O To collaborate in a research process Participants’ proposals for improvement (and next • collaborations)
Journal of Applied Research in Intellectual Disabilities 2016, 29, 146–159
Doing Research Together: A Study on the Views of Advisors with Intellectual Disabilities and Non-Disabled Researchers Collaborating in Research Carol Puyalto, Maria Pallisera, Judit Fullana and Montserrat Vila Institute of Educational Research, University of Girona, Girona, Spain
Accepted for publication 5 September 2014
Background Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Materials and Methods Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis.
Introduction In recent years, there has been a significant increase in the number of inclusive studies carried out (Brooks & Davies 2008; Young & Chesson 2008; Tuffrey-Wijne & Butler 2010; Nind & Vinha 2014), and the growing body of literature shows the challenges facing disability research in terms of the design and implementation of research conducted inclusively. The inclusive research model (Walmsley 2001, 2004; Walmsley & Johnson 2003) argues that people with relevant experience in relation to the studied topic should be included in the research and their participation facilitated in all phases of it. There has been wide debate regarding the relationship between researchers with and without disabilities and whether their participation should be identical in different phases of research (Ward & Simons 1998; © 2015 John Wiley & Sons Ltd
Results The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. Conclusions The study provides a better understanding of inclusive research processes by taking into account participants’ views. Keywords: inclusive research, intellectual disability, participatory research, research with people with intellectual disability
Walmsley & Johnson 2003; Abell et al. 2007; Kramer et al. 2011; Bigby et al. 2014). Another theme for debate is related to the support that people with intellectual disabilities may need to participate as researchers. Kiernan (1999) asked how equality of participation might be ensured between researchers with and without disabilities when it is the latter who provide support for the former when conducting research. Other authors, such as Williams et al. (2005) and McClimens (2008), suggest the complexity of the power relations established when researchers with and without disabilities collaborate. In part, this is due to researchers with intellectual disabilities’ needing support, which leads to the challenge for non-disabled researchers of providing them with this support without crossing the line of making decisions for them. In relation to this, there is a need to design and implement training 10.1111/jar.12165
Journal of Applied Research in Intellectual Disabilities
processes in research aimed at people with disabilities who participate as researchers so as to ensure the rigour and quality of research (Ward & Simons 1998; Walmsley & Johnson 2003; Walmsley 2004; Bigby & Frawley 2010; Strnadova et al. 2014). An analysis of these issues is essential to decision making in the design and development of research conducted inclusively; however, this process cannot ignore the analysis of opinions and views of those people who have been actively involved in such research. Such opinions and views regarding what participants have learnt and what participation has meant to their personal careers are critical to a comprehensive understanding of the experiences undertaken and suggestions for future improvement (Flood et al. 2012). The aim of this study is therefore to explore the views of people with and without disability who have worked together as part of an inclusive research process.
Research on the views and experiences of people who have participated in inclusive research processes There are different ways for people with disabilities to participate in research, each of which generates different roles and can therefore lead to different forms of learning and experiences (Ward & Simons 1998; Walmsley & Johnson 2003; Bigby et al. 2014). Bigby et al. (2014) review the peer-reviewed literature on inclusive research and identify three main approaches: the advisory approach, the leading and controlling approach and collaborative groups. In the first, people with intellectual disabilities participate in the research as advisors or counsellors. In the second, people with intellectual disabilities exercise control in initiating, leading and conducting their own research on topics that are important to them. And in the third, people with and without disabilities work together on a research process in which each contributes their skills and experience to generate new knowledge together. Although numerous inclusive studies have been conducted in recent years, very few have focused solely on exploring what it meant to people with intellectual disabilities to participate in research as advisors. This is the case with Abell et al. (2007), who describe a research group project (the Burton Street Project) comprising of people with intellectual disabilities and researchers without disabilities. In Butler et al. (2012), four researchers (two with intellectual disabilities) who contributed to research on © 2015 John Wiley & Sons Ltd, 29, 146–159
147
people with intellectual disabilities’ experiences of cancer provide their views on the experience. In Flood et al. (2012), three people with disabilities who collaborated on research into abuse in the UK speak about what it meant for them to do research and what they learnt. White & Morgan (2012) describe the participation of a person with intellectual disabilities in research conducted in Australia on the everyday literacy of people with intellectual disabilities. In the study by Deguara et al. (2012), members of an advisory committee (AC) charged with analysing the interests of people with disabilities in relation to independent living contribute their experiences as researchers. In The Money, Friends and Making Ends Meet Research Group & Tilly (2012), a group of people with intellectual disabilities analyse problems related to a lack of financial resources and support, considering what they have learnt from doing research together and what it was like being in a research group. These works all share the common theme of a non-disabled researcher and/or support staff providing support for people with intellectual disabilities in writing the paper, although authorship is shared. And finally, the study by Nind & Vinha (2014) provides information on the opinions and views of researchers with and without disabilities, support staff, academics researching disability and policymakers regarding their participation in inclusive research. A review of research on the views of participants with intellectual disabilities in inclusive research reveals that their comments on the experience refer to the following themes: the positive aspects of the experience, the negative aspects and what they have learnt from it. Below we refer to each point in turn: • Positive aspects of the experience. People with intellectual disabilities emphasize the feeling of forming part of a group (The Money, Friends and Making Ends Meet Research Group & Tilly 2012; Nind & Vinha 2014) and even establishing friendships among participants beyond the research context (Flood et al. 2012). Butler et al. (2012) highlight their satisfaction in having successfully performed research tasks and worked collaboratively with researchers. Other positive aspects relate to the feeling that their opinions are valued (Abell et al. 2007; Nind & Vinha 2014), that they are helping others (Flood et al. 2012) or that others are learning from them (Nind & Vinha 2014). Further aspects they highlight are enhanced confidence and personal independence (Flood et al. 2012), organization in their lives (The Money, Friends and Making Ends Meet
148 Journal of Applied Research in Intellectual Disabilities
Research Group & Tilly 2012), and increased motivation to do activities outside the home (Flood et al. 2012). • Negative aspects of participating in research. Participants with intellectual disabilities also note some difficulties, such as concentrating at meetings (The Money, Friends and Making Ends Meet Research Group & Tilly 2012), public speaking in the group, especially in the early stages of research (Flood et al. 2012), and excessive time spent giving explanations and managing disagreements between group members (Abell et al. 2007). • What they have learnt from the experience. People with intellectual disabilities highlight several skills, including, for example, the use of recording equipment or cameras (in Flood et al. 2012; White & Morgan 2012), the use of computers and the Internet (Flood et al. 2012), and different forms of disseminating the research (Abell et al. 2007; Flood et al. 2012; White & Morgan 2012). In White & Morgan (2012), Emma, the participant with a disability, states that the experience allowed her to understand what it means to do research. And in the experiences carried out by The Money, Friends and Making Ends Meet Research Group & Tilly (2012) and Flood et al. (2012), participants with intellectual disabilities highlight skills related to teamwork. Few studies have focused on the views of researchers without disabilities with regard to the experience of working with people with intellectual disabilities in research. In Abell et al. (2007), two researchers considered that they experienced some pressure to participate equally in the various stages of research, when in other research projects tasks were distributed according to the skills and availability of the various participants. The researchers point out that, in contrast to research conducted inclusively, most articles do not explain who did what and how it was done, it being accepted that several different authors contribute in different ways. Although in research projects conducted inclusively some researchers consider what has been learnt (Abell et al. 2007; Garbutt et al. 2009; Butler et al. 2012) and others document the research process by collecting participants’ views on different stages of the process in which they participated (O’Brien et al. 2014), no research has been found which aimed to provide an in-depth analysis of participants’ views and learning regarding the actual experience of participating in inclusive research.
Materials and Methods The aim of the study presented in this article was to determine the opinions and views of members of an AC composed entirely of people with intellectual disabilities and those of researchers without disabilities on the experience of participating in research on transition to adulthood. The function of the committee was to advise and work together with the research team in different phases of the study. To facilitate understanding of the text, the AC members will henceforth be referred to as ‘advisors’ and the non-disabled researchers as ‘researchers’. The advisors collaborated on the research project ‘The transition to adulthood and working life of young people with intellectual disability from an inclusive perspective: identifying problems, good practices and proposals for an improvement plan’. One part of this project was a case study aimed at obtaining information regarding the challenges and barriers facing young people with intellectual disabilities in their transition to adulthood. The case study was conducted in three phases from October 2012 to June 2013, the aims of which are detailed below. Phase 1: to obtain information regarding the educational pathways and current status of participants based on individual interviews with them and their families. Visual methods were used (drawings by participants) to stimulate the narrative. Phase 2: to gather further insight into the results of phase 1 by conducting two focus groups with participants, applying the photovoice technique to one of them. Phase 3: to conduct an in-depth review of the opinions of a group of young people participating on a transition to adulthood course regarding their current situation and aims for the future. This involved individual interviews with each of the young people, using visual methods as support, in this case a drawing made by the participant. In accordance with the principles of the inclusive research model, the authors decided to conduct this case study with the collaboration of people with intellectual disabilities. An AC of people with intellectual disabilities was set up to advise the research team during different phases of the case study. Six meetings of the AC were held throughout the study period, with great care taken in their planning and execution. The meetings entailed deciding upon relevant topics to include in the data collection instruments and analysing and interpreting the information obtained. © 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
Table 1 describes the objectives of each meeting and the contributions by the AC in developing the case study. As this represented a first collaborative research experience for both the members of the AC and the researchers, it was deemed opportune to perform an indepth analysis of what it meant to them in terms of learning and significance. Research was therefore conducted to obtain information regarding their opinions, perceptions and assessment of the experience, and this comprises the focus of the research presented in this article.
Participants To select AC participants, the researchers contacted five local centres working on social and workplace integration for people with intellectual disabilities. The research was explained to the professionals at these centres, and their help was requested in selecting two people to join the AC. The requirements were that: they were people with intellectual disabilities; they had sufficient autonomy to travel to the place where the meetings were to be held; they had adequate skills to participate in group discussions of an anticipated 2-h duration;
149
they had sufficient comprehension and communication skills. Throughout the selection process, the researchers were responsible for ensuring that the committee had the right balance of men and women and different age groups and that participants had different personal experiences in the various areas studied in transition to adulthood (educational and employment pathways, emancipation and independent living, among others). Once the centres had made initial contact with selected participants and they had shown an interest in participating, the research team contacted them directly by means of a letter written in plain language and the first meeting was convened. At this meeting, participants were informed of the aims of the research project, the intended functions of the AC and the expected frequency of meetings. The 10 participants then agreed to sign the informed consent form. The working group therefore comprised 10 advisors and five researchers. Participants are described in Table 2.
Instruments The following instruments were used: an initial questionnaire for advisors and a separate one for researchers; three focus groups with researchers; three
Table 1 Meetings held between the AC and researchers Meeting
Date
Aims
Contributions to case study
AC1
08/11/12
Constitution of the AC. Identify the main challenges in the transition process to adult life and the support received
AC2
07/02/13
AC3
14/03/13
AC4
18/04/13
AC5
09/05/13
AC6
18/07/13
Analysis and discussion of the data obtained from the interviews researchers conducted with young people in the case study Analysis and discussion of the data obtained from the focus group conducted with young people in the case study Analysis of challenges and support received in the transition process through photographs taken by the advisors themselves Jointly draft a conference presentation to explain the processes involved in the work undertaken Analyse the role of work in the life projects of participants in the case study
The discussion with advisors helped to determine their personal opinions and experiences of the transition process. The themes highlighted by the advisors were introduced and treated as a priority in designing the instruments used in the case study Advisors’ comments on the narratives of young people helped to identify the strengths and weaknesses of each theme. It also helped provide nuances for these narratives based on the advisors’ different points of view
AC, advisory committee. © 2015 John Wiley & Sons Ltd, 29, 146–159
Review the process undertaken and what it meant to participants Take an in-depth look at the role of work promoting social inclusion and the strengths and weaknesses of training processes aimed at facilitating the inclusion of young people
150 Journal of Applied Research in Intellectual Disabilities
Table 2 Participants demographics Advisors
Gender
Age
Status
A1 A2 A3 A4 A5 A6 A7 A8 A9 A10
F M F M M M M F M M
40 23 28 25 34 42 34 27 54 34
Works Works Works Works Works Works Works Works Works Works
part-time in an ordinary company. Lives with her mother. Has a partner part-time in an ordinary company. Lives with his parents at an Employment and Integration Service (EIS). Lives with her parents. Has a partner at a Sheltered Workshop (SW) and lives alone. Has a partner at a SW. Lives with a work colleague in a group home at a SW. Lives with his family full-time in a public institution. Lives with his parents full-time in a public institution. Lives with her parents at a SW. Has a daughter living independently and lives alone at a SW. Has a daughter living with her mother. Lives in a group home
Researchers
Gender
Age
Status
R1 R2 R3 R4
F F F F
47 48 50 25
R5
F
30
Work full-time at the university as a lecturer. Research focused on educational and social inclusion of people with disabilities. They prioritize the use of qualitative methods to deepen phenomena by obtaining information from principal participants (professionals, people with disabilities, families) PhD grant holder, working towards her PhD degree in the field of social inclusion of people with intellectual disabilities Works part-time in this research
focus groups with advisors; and one focus group with members of the AC and researchers together. The separate focus groups were carried out at regular points throughout the period of study, while the joint focus group formed part of the final meeting. The initial questionnaire collected the first impressions of participants regarding the experience of participating jointly in a research project. The questionnaire addressed to the members of the AC used open and closed questions in plain language accompanied by visual aids to facilitate understanding. Focus groups have been widely used in social research. Their potential uses include facilitating interaction between participants and discussing and contrasting opinions and experiences (Krueger & Casey 2000). Focus groups foster the inclusion and empowerment of social services users and, in particular, people with intellectual disabilities (Kaehne & O’Connell 2010). According to Cambridge & McCarthy (2001) and Barr et al. (2010), the focus group is a non-threatening environment that helps participants with intellectual disabilities gain confidence through the support they receive from other participants. Furthermore, it allows certain people with low literacy skills to participate actively in the research process. In this research, focus groups helped to encourage discussion and debate among the members of the AC, and between them and
the researchers. Focus groups were also used to explore the opinions and views of researchers regarding the meetings they had participated in. Table 3 lists the different research topics and the instruments used to obtain information on them. Questionnaires protocols and focus groups scripts are in Appendix 1.
Procedure Before starting the research, researchers applied for and were granted ethics approval. Both University of Girona and MINECO (Spanish Public Science Foundation) authorized the research (ref. EDU201122945). The AC met with the research team at the university on a monthly basis. Each meeting began with the introduction of an aim and related this to the research being undertaken. In accordance with the ethical guidelines of the Spanish Psychological Society, informed consent was sought from participants to record the meetings, which were later transcribed in full. The minutes of each meeting were drawn up in plain language that summarized the issues raised. At the beginning of each meeting, members of the AC received a portfolio containing the minutes in plain language along with other materials related to the content to be discussed in the meeting. © 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
151
Table 3 Instruments and topics Advisors
Researchers Focus group
Focus group
Advisors and researchers Focus group
Topics
Questionnaire
Participants’ views on aims and content of the meetings Participants’ views on their expectations with regard to participating in research Participants’ views on the space where meetings were held and their length Participants’ views on the researchers’ roles during the meetings Participants’ views on the accessibility of the research process Participants’ views on the advisors’ participation in meetings Advisors’ views on their contributions to the research Researchers’ views on the quality of advisors’ contributions throughout the research project Participants’ proposals for improvement Participants’ views on learning from the experience
X X
X
X X
X
X
X
X
X
X
X X X
X X X X
X X X
X X X
X
X
X X X X X
Following each meeting, the research team met to assess it in two ways: firstly, by analysing the information obtained in relation to the proposed aims and assessing how this information would be taken into consideration in the case study; then, in terms of its organization, functioning, dynamics, materials and strategies used, among other aspects, so as to propose improvement strategies for following meetings. The views and opinions of advisors were collected during the meetings held between the AC and the researchers. First, the initial questionnaire for researchers was prepared and administered and four questionnaires were collected from AC1. The initial questionnaire aimed at advisors was administered at the end of AC2, bearing in mind that at this time participants would have more information to express their views. During administration, the researchers offered them any support they required. Seven questionnaires were obtained. Focus groups with the researchers took place after the meetings AC2, AC3 and AC4. They were recorded using a voice recorder and lasted around 45 min on average. Focus groups with advisors took place after the meetings AC2 and AC3. Members of the AC were asked to assess the meeting that had just taken place. To do this, the same themes were addressed as in previous instruments, giving participants the freedom to discuss those they considered most relevant. All focus groups were recorded using a voice recorder and a video camera to facilitate further analysis.
Finally, a focus group was held with all participants (10 advisors and five researchers). For this, the entire AC5 meeting was dedicated to jointly discussing the inclusive research experience. This focus group lasted 2 h and was recorded using a voice recorder and a video camera.
© 2015 John Wiley & Sons Ltd, 29, 146–159
X
Questionnaire
X
X X
Data analysis A thematic analysis was conducted of advisors and researchers’ views. Transcripts were analysed by combining structural and descriptive coding (Salda~ na 2009). The structural codes were based on the topics addressed by the different instruments. The data analysis process was as follows: (i) after one researcher transcribed all the information, two researchers independently analysed the questionnaires and transcripts of the group interviews and focus groups, using the initial codes. Initial codes were established by the researchers based on the topics addressed by the different instruments (see Table 3). New codes were identified from the data and added to the initial list. These new codes consisted of short sentences summarizing the main theme of a piece of data (descriptive coding). This led to a second list consisting of the initial codes plus those arising from the analysis; (ii) with this second list of codes, the same two researchers compared their work and agreed on the final codes. All of the information was encoded using these final codes; (iii) two members of the team
152 Journal of Applied Research in Intellectual Disabilities
Table 4 Themes and categories Themes
Categories
1. Advisors’ views on what it means to them to form part of the AC
What we have learnt Collaborating as experts Being able to express ourselves freely The value of advisors’ contributions to the research Professional challenges Sharing research work Advisors’ proposals Researchers’ proposals
2. Researchers’ views on what the experience of conducting inclusive research with the AC means to them 3. Proposals for improvement
AC, advisory committee.
reviewed them together and then proceeded to agree on categories. Using these categories, the information was reorganized and the final categories established (see Table 4); (iv) a report was drawn up for each category to explore the relationships between codes. Four researchers from the team reviewed the reports to detect patterns, common themes and contrasts between the data in each of the categories (Coffey & Atkinson 1996).
Results Below are the results of the final themes, organized as follows: (i) views of advisors regarding what it means to them to form part of the AC; (ii) views of researchers on what the experience of conducting inclusive research with the AC means to them; (iii) suggestions for improvement. Fragments of segments are included to illustrate interpretations, indicating the source and the instrument used1 and the meeting in which the participant made the contribution.2
Advisors’ views on what it means to them to form part of the AC In relation to knowledge acquired, the advisors suggested that collaborating in research has enabled them to acquire knowledge related to the object of study. One theme that generated participants’ interest was knowing what young people who are transitioning
1
The following acronyms are used to cite instruments: IQ for the initial questionnaire; FG for the focus group. 2 The acronyms used in Table 1 are used to cite the meetings where participants made their contributions: AC1 for the first meeting, AC2 for the second, and so on.
to adulthood think and reflecting on this from their own experience. Interesting reflections are made by both the older and younger participants regarding differences between the two generations when facing the transition to adulthood: For us it was more difficult to adapt to society than for the next generation. I have not had the support that Advisor 2 has had. And Advisor 9 has not had even 30% of what Advisor 2 or younger people have had.Advisor 6 (42 y.o.) (FG/AC5)
My opinion is the same as that of Advisor 8, I’ve had the opportunity to listen to the views of older people and compare them to those of young people and I see quite a significant difference (. . .). The older ones see things very differently, and the younger ones don’t even think about it.Advisor 2 (23 y.o.) (FG/AC5) In addition, two advisors make an interesting contribution regarding how working together with the researchers allowed them to overcome shyness and gain confidence when speaking in front of the other participants (FG/AC5). Secondly, there is consensus among all of the advisors regarding their satisfaction in working with the university and helping to conduct research on transition to adulthood. (FG/AC3). For me it’s an honour to come here to the University because today I told my parents: – ‘I’m going to the University!’ – ‘To do what?’ my parents asked – ‘To do research work, they want my opinion’, and I felt like an important man. Going to the University, who would have thought © 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
it! My parents were very surprised that I was going to the University. Because coming (here) is an honour, and having people count on you is an honour (. . .).Advisor 9 (FG/AC5) That said, however, participating as experts at the university represented a challenge for some participants. In the final meeting, two advisors confessed to having felt insecure at first. Advisor 4 highlights the importance of feeling supported by the other participants to overcome insecurities at the beginning of the research process (FG/AC5). Lastly, one fact highlighted by the advisors is the opportunity they had to express themselves freely. Seven of them said they felt comfortable with the people in the working group. In fact, in the initial questionnaire, Advisor 1 highlights the importance of sharing opinions and being able to express herself. During the final meeting, the same person considers that the AC resembled a therapeutic space where it was possible to vent feelings and say what you think without feeling judged (FG/AC5). Five advisors agreed that feeling listened to and respected by both the other members and the researchers made them feel secure enough to talk about their own experiences. In fact, during meetings, advisors spontaneously expressed their grievances regarding discrimination experienced by people with disabilities: Look, one important thing is the social and family environment (. . .) There is a lot of scepticism about disability, there are many things people don’t know about us. When people talk about disability they say ‘this guy can’t do things’, they already have the preconceived idea that people with disabilities are unable. (. . .) It’s like a barrier.Advisor 6 (FG/AC5)
Researchers’ views on what the experience of conducting inclusive research with the AC means to them The researchers were unanimous in considering that the advisors contributed decisively to instrument design and data analysis, helping prioritize the issues that are most meaningful to them. This was deemed to have enriched the research process and the quality of results (IQ/AC1; FG/AC5). The five researchers agreed from the outset that the fact of having access to the experiences of people with disabilities who have made the transition to adulthood © 2015 John Wiley & Sons Ltd, 29, 146–159
153
enriched the subject of study while providing new learning related to conducting inclusive research: strategies related to the design of accessible materials, organizing meetings and providing support (FG/AC2; FG/AC3). . . . strategies about thinking how you can make the documentation more accessible, and not only how you do it but how you present it, how you structure the information, how you transmit it, how you return it, reports (. . .).Researcher 1 (FG/AC2) It was not without challenges, however, including reflecting on and discussing appropriate strategies for generating discussion in the meetings, taking decisions about which materials and methods to use, and perhaps the most important, being open to change and rethink case study instruments according to contributions from advisors throughout the research process. From the first meeting onwards, the five researchers agreed to share out different tasks to make the meetings dynamic and facilitate the participation of advisors. Although these tasks were valued positively by all of the researchers (IQ/AC1/GI/AC2/AC3/AC4), as Researcher 1 notes, it is important not to intervene too much in meetings and try to allow the advisors to progress naturally (IQ/AC1). For Researcher 4, it also represented a challenge to know the extent to which members of the AC were being offered the necessary support to actively participate in meetings (FG/AC3). As two researchers put it, these challenges provoked initial insecurity, but this decreased as the research progressed (FG/AC5). Lastly, sharing research work with the AC led the researchers to make various reflections. Firstly, four of the researchers stress the importance of this experience to them as their first participation in inclusive research (FG/AC2/AC3 and FG/AC5). As three researchers said, this meant being very attentive from the very beginning with regard to how the meetings progressed (IQ/AC1), and detecting and discussing the implications of conducting research from an inclusive perspective (FG/ AC2). In a broader sense, the researchers all agreed that this experience represented a qualitative leap forward in the way they conduct research.
Proposals for improvement During the final meeting, the AC formulated a series of proposals for the future. One proposal that motivates them is to disseminate the experience they have been
Published for the British Institute of Learning Disabilities
Journal of Applied Research in Intellectual Disabilities 2016, 29, 146–159
Doing Research Together: A Study on the Views of Advisors with Intellectual Disabilities and Non-Disabled Researchers Collaborating in Research Carol Puyalto, Maria Pallisera, Judit Fullana and Montserrat Vila Institute of Educational Research, University of Girona, Girona, Spain
Accepted for publication 5 September 2014
Background Despite an increase in inclusive studies in recent years, research on the views of the people with and without disabilities who have participated in these studies is scarce. The aim of this study was to explore the perceptions and views of advisors with intellectual disabilities and non-disabled researchers who collaborated together on a joint project to study transition to adulthood. Materials and Methods Two questionnaires were devised, one for advisors and one for researchers; two focus groups were held with people with intellectual disabilities, three focus groups with researchers, and one focus group with all participants together. Thematic analysis was used for the data analysis.
Introduction In recent years, there has been a significant increase in the number of inclusive studies carried out (Brooks & Davies 2008; Young & Chesson 2008; Tuffrey-Wijne & Butler 2010; Nind & Vinha 2014), and the growing body of literature shows the challenges facing disability research in terms of the design and implementation of research conducted inclusively. The inclusive research model (Walmsley 2001, 2004; Walmsley & Johnson 2003) argues that people with relevant experience in relation to the studied topic should be included in the research and their participation facilitated in all phases of it. There has been wide debate regarding the relationship between researchers with and without disabilities and whether their participation should be identical in different phases of research (Ward & Simons 1998; © 2015 John Wiley & Sons Ltd
Results The advisors valued this experience as an opportunity to learn new skills, freely express themselves on matters that affect them, and engage in a socially valued activity. The researchers considered that the participation of people with intellectual disabilities contributed to improving the quality of the research. Conclusions The study provides a better understanding of inclusive research processes by taking into account participants’ views. Keywords: inclusive research, intellectual disability, participatory research, research with people with intellectual disability
Walmsley & Johnson 2003; Abell et al. 2007; Kramer et al. 2011; Bigby et al. 2014). Another theme for debate is related to the support that people with intellectual disabilities may need to participate as researchers. Kiernan (1999) asked how equality of participation might be ensured between researchers with and without disabilities when it is the latter who provide support for the former when conducting research. Other authors, such as Williams et al. (2005) and McClimens (2008), suggest the complexity of the power relations established when researchers with and without disabilities collaborate. In part, this is due to researchers with intellectual disabilities’ needing support, which leads to the challenge for non-disabled researchers of providing them with this support without crossing the line of making decisions for them. In relation to this, there is a need to design and implement training 10.1111/jar.12165
Journal of Applied Research in Intellectual Disabilities
regarding what it means, in terms of theory and practice, to do research on disability from an inclusive perspective. In this respect, for the researchers, this experience has involved learning how to facilitate the participation of a group of people, reflect on the limits of their intervention and, on the basis of this, make decisions regarding the type and intensity of support to provide for participants with intellectual disabilities. The research team values the experience carried out as a necessary step forward as a team in conducting research on disability in which people with disabilities take a more active role by participating in different stages of the process. In the light of the results obtained throughout the research process, the constitution of an AC seems to be an appropriate strategy for advancing the development of inclusive research from a collaborative perspective: firstly, because it allows people with intellectual disabilities to learn skills related to research and the critical role they can play in the creation of knowledge on disability; secondly, because it allows researchers to learn skills related to the design and development of inclusive research. But above all, because the establishment of an ongoing dynamic of collaborative work between researchers and advisors helps transform current practices in disability research, we moved towards more honest research in which people with disabilities acquire the necessary central role. According to the key principles of inclusive research, people with intellectual disabilities should be involved from the beginning of the research. Ideally, they should determine the topic, focus and aims of the research. In this study, focus and aims were established by the researchers prior to the creation of the AC. However, the commitment and active participation of the advisors were crucial throughout the investigation as they contributed substantially to its development and results. In the experience referred to here, control of the research project remained mostly in the hands of the researchers, although at times part of this control was ceded to the advisors as they made decisions related to instrument design and data analysis. Undoubtedly, carrying out research in which participants with intellectual disabilities are able to play a greater role in decision making is the main challenge the researchers faced. To this end, and taking into account guidance from various authors (Ward & Simons 1998; Walmsley & Johnson 2003; Walmsley 2004; Bigby & Frawley 2010), this past year an educational research training programme has been undertaken with the advisors as the recipients. The purpose of this was to provide the © 2015 John Wiley & Sons Ltd, 29, 146–159
155
advisors with greater knowledge of the processes, instruments and basic strategies used in the research group, and to assess their availability and motivation to play a more active role in future studies. As for researchers, the development and evaluation of this course provided fundamental insights about how to do research inclusively.
Acknowledgment We are immensely grateful to the members of the Advisory Committee who collaborate with us in the research.
Funding This work was supported by the MINECO (Spanish Public Science Foundation) (grant number EDU201 122945). The funding bodies have not imposed any restrictions on free access to or publication of the research data.
Conflict of interest No conflict of interest has been declared.
Ethics This manuscript is submitted to the JARID to be considered for publication. The manuscript has not been published elsewhere, is not currently submitted elsewhere and is significantly different from other manuscripts that the authors have submitted elsewhere. The authors state that in each stage of the research, the ethical guidelines of the WMA Declaration of Helsinki and of the Spanish Psychological Society have been followed. All the authors have contributed to, seen, and approved of the manuscript and agree to the order of authors as listed on the title page.
Correspondence Any correspondence should be directed to Maria Pallisera, Institute of Educational Research, University of Girona, C/St. Domenec, 9, 17071 Girona, Spain (e-mail: [email protected]).
References Abell S., Ashmore J., Beart S., Brownley P., Butcher A., Clarke Z., Combes H., Francis E., Hayes S., Hemmingham I., Hicks
156 Journal of Applied Research in Intellectual Disabilities
K., Ibraham A., Kenyon E., Lee D., McClimens A., Collins M., Newton J. & Wilson D. (2007) Including everyone in research: the Burton Street research group. British Journal of Learning Disabilities 35, 121–124. Barr O., McConkey R. & McConaghie J. (2010) Views of people with learning difficulties about current and future accommodation: the use of focus groups to promote discussion. Disability & Society 18, 577–597. Bigby C. & Frawley P. (2010) Reflections on doing inclusive research in the “Making Life Good in the Community” study. Journal of Intellectual & Developmental Disability 35, 53–61. Bigby C., Frawley P. & Ramcharan P. (2014) Conceptualizing inclusive research with people with intellectual disability. Journal of Applied Research in Intellectual Disabilities 27, 3–12. Brooks M. & Davies S. (2008) Pathways to participatory research in developing a tool to measure feelings. British Journal of Learning Disabilities 36, 128–133. Butler G., Cresswell A., Giatras N. & Tuffrey-Wijne I. (2012) Doing it together (DM Special Issue). British Journal of Learning Disabilities 40, 134–142. Cambridge P. & McCarthy M. (2001) User focus groups and Best Value in services for people with learning disabilities. Health and Social Care in the Community 9, 476–489. Coffey A. & Atkinson P. (1996) Making Sense of Qualitative Data: Complementary Research Strategies. Sage Publications, Thousand Oaks, CA. Deguara M., Jelassi O., Micallef B. & Callus A. (2012) How we like to live when we have the chance. British Journal of Learning Disabilities 40, 123–127. Flood S., Bennett D. & Melsome M. (2012) Becoming a researcher. British Journal of Learning Disabilities 41, 288–295. Garbutt R., Tattersall J., Dunn J. & Boycott-Garnett R. (2009) Accessible article: involving people with learning disabilities in research. British Journal of Learning Disabilities 38, 21–34. Kaehne A. & O’Connell C. (2010) Focus groups with people with learning disabilities. Journal of Intellectual Disabilities 14, 133–145. Kiernan C. (1999) Participation in research by people with learning disability: origins and issues. British Journal of Learning Disabilities 27, 43–47. Kramer J. M., Kramer J. C., Garcıa-Iriarte E. & Hammel J. (2011) Following through to the end: the use of inclusive strategies to analyse and interpret data in participatory action research with individuals with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities 24, 263–273. Krueger R. & Casey M. A. (2000) Focus Groups: A Practical Guide for Applied Research. 3rd edn. Sage Publications, Thousand Oaks, CA.
McClimens A. (2008) This is my truth, tell me yours: exploring the internal tensions within collaborative learning disability research. British Journal of Learning Disabilities 36, 271–276. Nind M. & Vinha H. (2014) Doing research inclusively: bridges to multiple possibilities in inclusive research. British Journal of Learning Disabilities 42, 102–109. O’Brien P., McConkey R. & Garcıa-Iriarte E. (2014) Coresearching with people who have intellectual disabilities: insights from a National Survey. Journal of Applied Research in Intellectual Disabilities 27, 65–67. Salda~ na J. (2009) The Coding Manual for Qualitative Researchers. Sage Publications, Los Angeles, CA. Strnadova I., Cumming T. M., Knox M., Parmenter T. & Welcome to Our Class Research Group (2014) Building an inclusive research team: the importance of team building and skills training. Journal of Applied Research in Intellectual Disabilities 27, 13–22. The Money, Friends and Making Ends Meet Research Group & Tilly L. (2012) Having friends – they help you when you are stuck from money, friends and making ends meet research group. British Journal of Learning Disabilities 40, 128–133. Tuffrey-Wijne I. & Butler G. (2010) Co-researching with people with learning disabilities: an experience of involvement in qualitative data analysis. Health Expectations 13, 174–184. Walmsley J. (2001) Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society 16, 187–205. Walmsley J. (2004) Inclusive learning disability research: the (non-disabled) researcher’s role. British Journal of learning Disabilities 32, 65–71. Walmsley J. & Johnson K. (2003) Inclusive Research with People with Learning Disabilities: Past, Present and Future. Jessica Kingsley Publishers, London. Ward L. & Simons K. (1998) Practising partnership: involving people with learning difficulties in research. British Journal of Learning Disabilities 26, 128–131. White E. L. & Morgan M. F. (2012) Yes! I am a researcher. The research story of a young adult with Down syndrome. British Journal of Learning Disabilities 40, 101–108. Williams V., Simons K. & Swindon People First Research Team (2005) More researching together: the role of nondisabled researchers in working with People First Members. British Journal of Learning Disabilities 33, 6–14. Young A. & Chesson R. (2008) Determining research questions on health risks by people with learning disabilities, carers and care-workers. British Journal of Learning Disabilities 36, 22– 31.
© 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
Appendix 1 Questionnaires protocols and focus groups scripts. (1). Questionnaire for advisors protocol. 1a) WHAT DO YOU THINK ABOUT DISCUSSING TOGETHER ABOUT THE EXPERIENCES OF YOUNG PEOPLE WITH INTELLECTUAL DISABILITIES?
EXCELLENT
WELL
REGULAR
BAD
1b) WOULD YOU LIKE TO ADD SOMETHING?
2a) WHAT ABOUT THE PLACE WHERE WE MEET? AND THE LENGTH OF THE MEETINGS?
EXCELLENT
WELL
REGULAR
BAD
2b) WOULD YOU LIKE TO ADD SOMETHING?
3a) HAVE YOU PARTICIPATED IN THE MEETING AS MUCH AS YOU WANTED ?
EXCELLENT
WELL
REGULAR
3b) WOULD YOU LIKE TO SAY ANYTHING MORE?
© 2015 John Wiley & Sons Ltd, 29, 146–159
BAD
157
158 Journal of Applied Research in Intellectual Disabilities
4a) WHAT DO YOU THINK ABOUT THE WORK OF THE FACILITATORS?
EXCELLENT
WELL
REGULAR
BAD
4b) WOULD YOU LIKE TO RECEIVE MORE SUPPORT?
5a) WHAT DO YOU THINK ABOUT THE MATERIALS GIVEN TO YOU?
Minutes
EXCELLENT
InformaƟon
WELL
REGULAR
BAD
5b) WHAT DO YOU THINK ABOUT THE COMPUTER PRESENTATION?
EXCELLENT
WELL
REGULAR
BAD
5b) WOULD YOU LIKE TO HAVE SOME OTHER MATERIALS? WHICH ONE
© 2015 John Wiley & Sons Ltd, 29, 146–159
Journal of Applied Research in Intellectual Disabilities
159
6) DO YOU HAVE SOME PROPOSAL TO IMPROVE THE NEXT MEETINGS?
THANK YOU VERY MUCH!
(2). Questionnaire for researchers protocol 1. What do you think about discussing together with advisors about the transition to adult life of people with intellectual disability? 2. What do you think about the place where we meet and the length of the meeting? 3. Would you describe the participation of the advisors (interaction level and participation level) during the first meeting? 4. Do you think it is possible to improve the participation of the advisors? Why? How? 5. What do you think about the impact of the advisors’ contributions? 6. Do you think the materials and support given to the advisors have contributed to the good development of the meeting? 7. How could we improve the accessibility of the meetings? 8. Do you have some proposal to improve the next meetings? Thank you! (3). Focus groups with advisors and Focus groups with researchers script. A common script was prepared for the different meetings, and the script was adapted according to the dynamic of each group. The script was as follows: • Views on aims an content of the meeting
© 2015 John Wiley & Sons Ltd, 29, 146–159
•
Views on the development of the meeting (place, length. . .) • Views on the researchers roles during the meeting • Views on the accessibility of the research process • Views on the advisors’ participation in the meetings • Participants’ proposals for improvement • Advisors’ views on their contributions to the research (only in focus group with advisors) • Researchers’ views on the quality of advisors’ contributions throughout the research project (only in focus groups with researchers) (4). Focus group with advisors and researchers script. • Views on the development of the meeting (place, length. . .) • Views on the researchers roles during the meeting • Views on the accessibility of the research process • Views on the advisors’ participation in the meetings • Participants’ views on the quality of advisors contributions throughout the research project. • Participants’ views on what they have learnt from the experience: O To be a member of an advisory committee O To collaborate in a research process Participants’ proposals for improvement (and next • collaborations)
