People with Intellectual Disability as Researchers

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to informal training as the inclusive research project is carried out (Abma, .... no longer seen as 'subjects' of research but rather as 'co-researchers' who ..... computer-assisted qualitative data software is increasingly used to analyse .... Greenwood, & Axford, R (Eds.), Research Methods for Nursing and Health Science (pp.
People with Intellectual Disability as Researchers: Exploring the experiences of an inclusive research team

PhD Research Proposal

Felicity Crowther

Disability and Community Inclusion School of Health Sciences Flinders University 1

Contents Introduction ............................................................................................................................... 3 Research Questions ................................................................................................................... 3 Brief Literature Review .............................................................................................................. 4 Theoretical Framework .............................................................................................................. 8 Methodology.............................................................................................................................. 9 Method .................................................................................................................................... 10 Participants .......................................................................................................................... 10 Research Mentor ................................................................................................................. 11 Ethics .................................................................................................................................... 12 Data Collection ..................................................................................................................... 14 Analysis ................................................................................................................................ 17 Results ...................................................................................................................................... 18 Timelines .................................................................................................................................. 20 Resources ................................................................................................................................. 21 References ............................................................................................................................... 22

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Introduction The proposed study will use a critical ethnographic approach to explore the experiences of all members of an inclusive research team in undertaking a disability research study. Walmsley and Johnson (2003, p63) defined inclusive research as “research that includes or involves people with learning disabilities as more than subjects of research … [and] as a term covers two major disability research traditions, participatory and emancipatory research”. Key principles of inclusive research are also provided. Firstly, inclusive research must begin with a research problem that is of interest to people with intellectual disability and produce good outcomes for them. Additionally, it should be performed collaboratively, be inclusive of and accessible to people with intellectual disability (Walmsley & Johnson, 2003). Inclusive research methods are increasingly being used in disability research recognising that people with intellectual disability are no longer seen as ‘subjects’ of research, but rather as ‘co-researchers’. Although there is a growing body of literature on the process of undertaking inclusive research a systematic review of the literature identified that there is limited literature regarding the outcomes the people with intellectual disability see for themselves from their participation as researchers. This study aims to address this gap with a critical ethnographic approach to explore the experiences for researchers with intellectual disability and a university researcher from their participation in an inclusive research study.

Research Questions The proposed study will address the following questions: 

What are the experiences of members of an inclusive research team of their participation in an inclusive research study?



What are their perceptions of the barriers and enablers to effective inclusive research processes?

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Brief Literature Review Inclusive research methods have developed from ‘participatory’, ‘action’ and ‘emancipatory’ paradigms which recognise the contribution people with intellectual disabilities can make to all parts of the research process (Walmsley & Johnson, 2003). The involvement of people with intellectual disabilities in research was initially instigated through the disability movement which saw people with disability coming together to claim their rights at a political level (Barnes, Mercer & Shakespeare, 1999). Mercer (2004) emphasised that participating in the research process can be an empowering experience for people with disabilities and university researchers should not undertake research exclusively. The involvement of people with intellectual disabilities in emancipatory research facilitates a significant shift towards them being accepted as capable of providing a reliable view on their own experiences and lives (Stalker, 1998). Despite this shift Kitchin (2000) identified that research in disability discourse still largely excluded people with disabilities at the turn of the century twenty years later. Kitchin (2000) also explained that disconnect exists between academic research and actually bringing about change in the real world. However, there is a lack of formal knowledge about supporting researchers with intellectual disabilities within an inclusive research framework (Strnadova, Cumming, Knox, Parmenter and Welcome to Our Class Research Group, 2014). Bigby & Frawley (2010) identified that there is little information on how people with intellectual disability are involved in inclusive research, the roles they play, the challenges that are faced by the inclusive research team and the support that is required to facilitate their involvement. Grant and Ramcharan (2009, p31) explained that there are currently “no universally agreed standards for assessing inclusive research or research studies that embrace elements of inclusive research practice”. A systematic review of the literature on inclusive research methods identified a number of key themes related to the process of doing inclusive research, the advantages, challenges and opportunities. The themes included: training, involvement of people with intellectual disabilities, self-advocacy, benefits and challenges of inclusive research, and the perspective of researchers with intellectual disabilities. Training

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Training in research methods to the inclusive research team has been approached in a variety of ways from a formal learning program detailing what research involves and how it is carried out (Carey, 2014; Cumming, Strnadova, Knox & Parmenter, 2014; Koenig, 2012) to informal training as the inclusive research project is carried out (Abma, Nierse & Widdershoven, 2009). Studies also placed varying emphasis on the importance of training. For example, Bigby, Frawley & Ramcharan (2014) did not provide training to the inclusive research team. Instead they used a strengths based approach to the inclusive research project by identifying and making use of the skills both academic researchers and researchers with intellectual disabilities already had and working with these. Involvement of People with Intellectual Disabilities Research that identified as using inclusive research methods involved people with intellectual disabilities as researchers in a variety of ways. The majority of studies involved people with intellectual disabilities in one or two aspects of the research process (Bjornsdottir & Svensdottir, 2008; Carey, 2014; Cook & Inglis, 2014), such as data collection and dissemination of findings. A minority of studies involved people with intellectual disability in nearly every aspect of the research process (Conder, Milner & Mirfin-Veitch, 2011; Koenig, 2012). Others claimed to use inclusive research methods; however it could be argued that their research did not align with the principles of inclusive research. For example, Boland, Daly & Staines (2008) identified as using an inclusive research method. They reported including a person with disability on an advisory committee for the research project, however did not specify if this person had an intellectual disability or if they were involved in the research process. Therefore, it could be argued that this approach does not align with the key principles of inclusive research methods. Prior to 2010 there were few examples of inclusive research that involved researchers with intellectual disability in the data analysis process. A study by Koenig (2012) was one of the few that did involve researchers with intellectual disabilities in the data analysis and outlined the “added value” of doing this. The benefit of involving researchers with intellectual disabilities in the data analysis process included their ability to bring new insight to the analysis and to influence direction of further analysis (Koenig, 2012). More recently, there appears to be a move towards involving researchers with intellectual disabilities in the data analysis process through the use of accessible methods. For example 5

the use of recordings rather than transcripts and the adoption of creative methods, such as photographs and diagrams for discussion and analysis with the researchers with intellectual disability (Chapman, 2014). Self-Advocacy Inclusive research commonly uses self-advocacy groups to recruit researchers with disabilities (Chapman, 2014). This appears to be because self-advocates already possess some of the skills needed by researchers, such as confidence in speaking to a variety of people (Conder et.al, 2011). Conder et.al (2011) alluded to this point when talking about the beginning of an inclusive research project stating “the contracted researchers had little knowledge of the skill sets that co-researchers would bring, but did know that they were chosen for the self-advocacy role because of their ability to speak out and contribute to discussions within their organisation”; all of which are important qualities for researchers. Benefits of Inclusive Research Methods Inclusive research methods resulted in benefits for those participating in the research as well as to the research process. Benefits for co-researchers participating in the research included the development of new skills (Conder et.al, 2011; Flood, Bennet, Melsome & Northway, 2013) and empowerment experienced through the process (Abma et.al, 2009; Atkinson, 2010; Bjornsdottir & Svensdottir, 2008). Co-researchers were also beneficial to the research process as they brought new insight to the data analysis process (Koenig, 2012), were beneficial to recruitment of participants (Abma et.al, 2011; Bigby, et.al, 2014) and assisted in increased trustworthiness and rigour (Cook & Inglis, 2012). Challenges of Inclusive Research Methods Inclusive research methods also brought common challenges related to power imbalance, and barriers to inclusivity of the research process. Power differences between university researchers and co-researchers are reported in a number of studies (Abma et.al, 2009; Brooks & Davies, 2007; Conder et.al, 2011). However, Bigby et.al (2014) explained they overcame this challenge through ensuring power was dispersed among the research team by always making major decisions as a group. Ensuring the inclusivity of the research process can also be challenged by funding restrictions, tender timeframes and academic guidelines (Bigby & Frawley, 2010; Bjornsdottir & Svensdottir, 2008). 6

Perspective of Researchers with Intellectual Disabilities The majority of studies reporting on the outcomes of inclusive research do so post study, from the perspective of the academic researchers. Publication from the perspective of the researchers with intellectual disability about the process and outcome of inclusive research was rarely reported. Studies may refer to the observations of academics or comments made by researchers with disabilities throughout the research process but this is generally presented by academics and analysed from their perspective. March, Steingold, Justice and Mitchell (1997) was one of the first examples of a publication reporting on inclusive research written by people with intellectual disability about the research process from their perspective. This however has not been continued as a common practice. March et.al (1997) reported on how the research was made accessible to them, the challenges of being involved in the research and the benefits of being involved in the research. Flood et.al (2012) is another more recent publication written from the perspective of people with intellectual disability. The co-researchers reported on their experience of doing research and they recommended future researchers also do this stating “we would like to hear from other people about their experiences, that way we can all learn from each other” (Flood et.al, 2012, p41). Puyalto (2016) is the only study that reports on the perspective of people with intellectual disability using mixed methods and set out with an intention to do so rather than reporting post study. The study found that the coresearchers viewed participating in research as a worthwhile experience and university researchers reported benefits to the quality of the research. Carey (2014) provided research training to people with intellectual disability and reported on their perspective of the learning process and content. This was done through interviews pre and post the learning program and weekly group feedback following each learning session. The people with intellectual disability involved in the program were participants of this study. Although this study intended to report from the beginning and did so from the perspective of people with intellectual disability it only focused on research training and did not carry out an inclusive research project. Conder etl.al (2011) discussed the benefits that arose for co-researchers in their study. Benefits they noted include new learning, personal satisfaction and development of confidence and interpersonal skills. Conder et.al (2011) also stated that these benefits may 7

“have been hoped for but it was not specifically planned ahead of time” again demonstrating the trend to report the impact of participation in inclusive research studies retrospectively. However, they recognised that their reporting on the research process post study using their field notes and organisations reports could result in co-researchers actually being viewed as participants of the study which was contrary to the intended goal of their study. Difficulties associated with supporting co-researchers to self-reflect also may be a contributing factor to the lack of literature reporting on inclusive research from the coresearchers perspective. Bigby and Frawley (2010) used action research to support a coresearcher with intellectual disability in an inclusive research study they carried out. They reported though that it was difficult to facilitate the co-researcher’s self -reflection on his involvement and the process. Carey (2014) also faced this problem and explained that recorded and transcribed comments from co-researchers were used as data due to the difficulties faced with co-researchers self-reflecting. In summary, the findings of this review has highlighted a gap in the literature; namely the views of people with intellectual disabilities on the impact of their participation in the research process. If we as disability researchers are being truly inclusive it is critical that the perspective of people with intellectual disability on being involved in the research process and their experiences of this from their perspective is considered. The proposed study aims to address this gap through the use of critical ethnographic approach to explore the experiences for researchers with intellectual disability and a university researcher from their participation in an inclusive research study.

Theoretical Framework Critical social theory will be the theoretical framework applied to the proposed study. Calhoun (1995) explained the disconnect between traditional theory and the reality of society and human life. Traditional theory is an activity of academics undertaken and analysed in isolation from the rest of society. It fails to take into account the changing nature of human action instead viewing this as a fixed condition, therefore preventing the possibility of emancipation. Approaching research with a traditional theoretical framework has been argued to further disable people and only benefit the agenda of professionals and

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policy (Barnes et.al, 1999). Barnes et.al (1999, p215) explained disability research needed to move away from a traditional theoretical approach and instead align with a social model through the use of critical inquiry or emancipatory research “an approach which emphasises the role of research in promoting the interests of ‘oppressed’ groups”. Critical social theory rejects the notion that human action is fixed through recognising the capacity of humans and the potential for “social transformation” (Calhoun, 1995, p20). Meekosha and Shuttleworth (2009) further explain critical social theory stating it is aimed at emancipation and a commitment to facilitating social change by aiming to identify “power relational dynamics within society” in order to bring about this social change (Meekosha & Shuttleworth, 2009, p53). Critical social theory is an appropriate theoretical framework for the proposed study as its aim to emancipate through questioning of power relations also aligns with the aims of inclusive research methods. As discussed previously, inclusive research methods recognise that people with intellectual disability are no longer seen as ‘subjects’ of research but rather as ‘co-researchers’ who are experts by experience and capable of providing a reliable view on their own experiences and lives (Stalker, 1998). Inclusive research methods require people with intellectual disability and academic researchers to work collaboratively addressing the power dynamic that has historically existed between the two. Policy and values changes such as the United Nations Convention on the Rights of Persons with Disabilities (2008) and the Equal Opportunities Act (1984) have also contributed to the increasing use of inclusive research methods. Such policies have also contributed to a shift in attitudes towards people with intellectual disability further facilitating their participation in the research process as co-researchers.

Methodology A critical ethnographic methodology will be employed for the purpose of this study. Grbich (2004) explained that a critical ethnographic approach examines a culture and the structures that exist within it. These structures are challenged and participants are empowered to bring about change by working from the bottom up. Researchers using a critical ethnographic approach are looking to question power structures that exist within society. Power structures are therefore challenged empowering participants through the

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provision of new knowledge (Grbich, 2004). Jones (2010, p41) further explained that in using this approach researchers “can achieve depth and richness that is often lacking in other less immersed accounts”. Critical ethnography is an appropriate methodology for the proposed study as it aligns with the aims of inclusive research to address power structures that have historically existed between researchers and people with intellectual disability.

Method

Figure 1 – Research Project Flowchart

Participants Participants of this study will be adults with intellectual disabilities who are interested in participating in research. Inclusive research teams reported on in the literature vary in size with examples ranging from just one researcher with intellectual disability (Bjornsdottir & Svensdottir, 2008) to in excess of ten researchers with disability (The Money, Friends and Making Ends Meet Research Group, 2012). For the purpose of this study the inclusive research project needs to be manageable in the context of a PhD, therefore the aim will be to recruit approximately eight to ten participants to be co-researchers in the inclusive research project. This will allow for potential drop out during the course of the project.

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A purposive sampling approach will be used to recruit participants. A purposive approach ensures recruitment of participants with the information and experiences needed for the purpose of the study (Miniciello, Sullivan, Greenwood and Axford, 2004). This approach is applicable as the research study requires recruitment of people with intellectual disability who will be recruited through contact with local disability organisations supporting this group of people. Initially senior management of two organisations will be approached and a meeting requested to provide them with information about the research. If the organisations are willing, they will be responsible for distributing information to people they support that fit the participant criteria. Should there be interest from potential participants the organisation will contact the primary researcher to arrange an information session. Organisations will be asked to encourage potential participants to discuss the research with people they trust who are able to support them in making a decision to participate. In addition to having an intellectual disability participants will need to be interested in participating in an inclusive research project. A role description will be developed and distributed to potential participants along with an information sheet detailing the study to aid in participants’ provision of informed consent. Llewellyn, Sullivan and Minichiello (2004) emphasised the importance of gaining informed consent from participants to participate in the study. This should include the provision of information describing the study to participants in language they understand and signing of a consent form also in language they understand (Llewellyn et.al, 2004). Following the provision of this information interested potential participants will be required to apply to participate in the inclusive research study and take part in an informal interview with the primary researcher in which they will discuss the role and proposed study further ensuring their provision of informed consent.

Research Mentor In addition to the participants described above a research mentor will also be recruited to act in an advisory role for the study. Bigby et.al (2014, p4) define the advisory role stating “people with intellectual disability may be actively involved advising about research design, recruitment strategies, data collection or dissemination methods”. The advisory role is a method of inclusive research approaches, and given that the proposed study is investigating the impact of inclusive research it is important that an advisory role is 11

incorporated to ensure the study aligns with an inclusive research approach. This will be done through the recruitment of an interested person with intellectual disability who will act as a mentor on the research process applied in this study to ensure its accessibility and applicability to people with intellectual disability. This will include being involved in the inclusive research study along with the participants described above. A role description will be developed outlining the mentor role and will be distributed amongst disability networks. Interested people with intellectual disability who meet the criteria will be invited for an informal interview. Criteria for this role will include sound communication, organisation and time management skills, confidence to speak up and an ability to contribute to discussion. It would also be desirable that the person has had previous experience in an advisory role before and an understanding or interest in research. It would be ideal for this to be a paid role, however payment of researchers with disability can be difficult (Bigby & Frawley, 2010), instead a reciprocal agreement will be made between the primary researcher and mentor with intellectual disability. This will involve the mentor providing assistance on the study and in return the primary researcher assisting the mentor with something of value to them such as social support or assistance to learn a new skill.

Ethics The involvement of people with intellectual disability is an essential aspect of the proposed study. People with intellectual disability are considered to be a vulnerable group (Dalton & McVilly, 1994), therefore extensive consideration will need to be given to the ethical issues that may arise in the proposed study as described below. These vulnerabilities are generally associated with “concerns about ability to make informed, voluntary decisions, the extent and nature of participation, and a de-emphasis on benefits” (McDonald & Kidney, 2012, p27). Despite these vulnerabilities it is important that people with disability are included in the research process as their involvement provides the opportunity to give a deeper understanding of their lived experience as well as further encourage inclusive and relevant research (McDonald & Kidney, 2012). Ethics approval will be sought from the Social and Behavioural Research Ethics Committee at Flinders University. Consideration will be given to informed consent, data collection, storage and disposal, safeguards and mechanisms to respond to adverse effects,

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and ensuring participation in the research is beneficial to participants. The proposed strategies for each of these considerations are now discussed. Informed consent will need to be provided by participants. This will involve the development of a role description presented in a Plain English and audio format distributed to local disability organisations followed by information sessions with potential participants. Where participants are unable to provide informed consent due to capacity a supported decision making approach is proposed. A supported decision making approach to consent to participation in research begins with assuming that the potential participant has capacity and then allowing them to have support from significant people in their lives to support them in making their decision about being involved in the research (Bach & Rock, 1996 cited in Iaconco, 2006). During the course of the proposed study a number of data collection methods will be utilised including focus groups, participant observation, interviews and field notes. Each of these data collection methods has the potential to gather sensitive information about participants and data collected will therefore need to be handled with care. Flinders University have established ‘Research Data Management Guidelines’ (2015) and a ‘Policy on Research Practice’ (2001) outlining instructions for the collection, storage, sharing and disposal of data. Each of these documents will be discussed with supervisors on a regular basis and instructions outlined in them adhered to. Northway, Howarth and Evans (2014) identified that it is not always possible to know what research topics are sensitive as this may differ amongst individuals. Therefore, it is important to attempt to identify sensitive areas and have supports and strategies in place should participants need to access them. For the purpose of this study the proposed safeguards include ensuring participants know they can speak with researchers about concerns and that they are aware of their right to withdraw from the study at any stage without consequence. Although there is no intention for the research to investigate obviously sensitive topics it may emerge that unexpected topics are sensitive to individual participants, should this occur participants will be linked with or referred to Flinders University counselling service. Safeguards also need to ensure participants’ anonymity is maintained. Participants will be assigned pseudonyms for the purpose of dissemination to ensure their privacy and confidentiality. Given the small sample size intended for the 13

proposed study it will also be important to consider identifying characteristics of participants when communicating the findings of the study. Dalton and McVilly (2004) explained the need for researchers to clearly identify the intended benefits to people with intellectual disability of their proposed research to their peers, the wider community and people with intellectual disability. The major benefit of participating in the proposed research study is the opportunity to be involved in directing and undertaking research in a topic that is of interest to the participant. The literature that reports on previous inclusive research also commonly reports benefits to people with intellectual disability from participating in inclusive research include the development of new skills and confidence (Conder et.al, 2011; Flood et.al, 2012). Whilst these benefits cannot be guaranteed to participants they can be an expected outcome.

Data Collection Inclusive Research Project The inclusive research team will undertake an inclusive research project. To align with the categories that Walmsley and Johnson (2003) provide to describe inclusive research the inclusive research study will be initiated and owned by the researchers with intellectual disability and they will be involved in all aspects of the research process. Training Inclusive Research Team The first step of the inclusive research project will be to develop and provide research training to the inclusive research team. The purpose of the training is to ensure all researchers (with and without intellectual disabilities) understand research methods. Research skills training still remains mostly ignored in inclusive disability research literature (Strnadova et.al, 2014; Northway et.al, 2014) and there is debate as to whether a formalised training program should be provided or not. Walmsley (2004) explained just as academic researchers need support through participation in doctoral programs, attendance at conferences, and training to conduct quality research, so to do researchers with intellectual disabilities. Morgan, Moni and Cuskelly (2015) further this point stating becoming a researcher involves complex learning but little information exist specifying how this is done. Strnadova et.al, (2014) found that 14

research training was an important aspect in building the capacity of the researchers with intellectual disability and not only were there benefits to understanding the research process the provision of research training also assisted with team building and personal benefits including making friends and the opportunity to learn. It was recommended that training be based on the needs of all team members with and without disability (Strnadova et.al, 2014). Nind, Chapman, Seale and Tilley (2015) identified that formalised training programs that condense learning into sessions do not recognise that learning is an ongoing process. In addition they raise concerns that formal programs may result is some people being excluded and instead recommend that inclusive research teams develop new methods of research together. Bigby et.al (2014) advocated the use of strengths based approach to the inclusive research project by identifying and making use of the skills both academic researchers and researchers with intellectual disabilities already had and working with these instead of formal training. Koenig (2012) incorporated research training into meetings of the inclusive research team initially providing training outlining the roles of team members and research in general. Training was then provided on various research methods as it was required throughout the course of the project. This method of training as needed resulted in increased research capacity of the researchers with intellectual disability (Koenig, 2012). The blended approach applied by Koenig (2012) of initial training followed by training as was needed throughout the research project will be used in the proposed research study. An initial training defining research, explaining why research is undertaken and providing an overview of research methods will be provided to the inclusive research team. With the knowledge gained from this initial training the inclusive research team will develop their research project. Throughout the research project additional training will be provided as the need arises. This blended method of beginning with a formalised training program followed by training on an as needs basis addresses the argument that learning is an ongoing process (Nind et.al, 2015) and recognises that research is a complex process and therefore providing training to develop research skills is an important step (Morgan et.al, 2015). In order to keep within the capacity of a PhD the training packages will not be entirely developed by the academic researcher. Instead researchers who have identified 15

using a research training package for their inclusive research teams will be contacted to determine if they are willing to share the training package their inclusive research teams utilised. Figure 2 outlines some of the expected topics that will be covered during the training. Initially the training will begin with team building and providing an overview of research which will allow the inclusive research team to choose the topic of their inclusive research study and begin to design their study. The training will continue throughout the course of the inclusive research study and training will be specific to the skills and knowledge needed to carry out each aspect of the study. For example, an overview of possible research methods the inclusive research team might choose to use will be provided so they can then be supported to choose their research methods, once they have chosen this more extensive training will be given on their chosen methods. Research Skills Training Topics 1

Team Building & Team Work

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What is data and how do we get it? Deciding how we will collect data…

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What is research?

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Recruiting participants… Consent…

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Why do we do research?

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What is ethics? Applying for ethics approval…

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How do we do research?

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Data Collection…

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Choosing a research topic…

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Analysing data…

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Developing research questions…

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Writing up what we find out…

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Looking at the literature…

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Public Speaking… Sharing what we find out…

Figure 2 – Research Skills Training Topics Focus Groups Focus groups are a common method of data collection in evaluation research as they assist in measuring success and facilitating discussion of the strengths and weaknesses of the program (Nagy Hesse-Biber & Leavy, 2011). Focus groups will be used in the proposed 16

study at the end of each research meeting and training session. The purpose of these focus groups will be to evaluate, from the perspective of the inclusive research team, what has worked well, what could be improved and what have the team learnt from the session. Participant Observation and Field Notes O’Reilly (2009, p150) state that “the main method of ethnography is participant observation”. Participant observation is such an important aspect of the research method as simply talking to people can often result in a “sanitized or censored” version of events and observation “can help in filling in these gaps” (Watt & Scott, 2010, p110). Watt and Scott (2010) suggest that participant observation when using an ethnographic approach should begin with initially observing as much as possible of the culture under study and recording this in field notes, as the researcher gains experience in this setting they should refine their observations. It is also important for the researcher to be aware of their own experiences and values and continually reflect on how this could be influencing their opinion of the observations (Watt & Scott, 2010). It is also necessary to determine how access to the group under study will be gained, the level of participation the researcher will take on within this group and whether the research will be covert or overt (O’Reilly, 2009; Watt and Scott, 2010). For the purpose of the proposed study it will be necessary for the primary researcher to both participate in the group and observe as the primary researcher with a leading role in supporting the inclusive research team. Participant observation will be done overtly for the purpose of this study and will be conducted during the research meetings and training sessions. The research meetings and training sessions will be video recorded to ensure thorough participant observation occurs. Semi structured interviews Semi-structured interviews have been used to obtain and gather perspectives of people with intellectual disability (Ruddick & Oliver, 2005). Semi structured interviews will be held with all members of the inclusive research team prior to the study beginning, during the study and post study to evaluate their involvement in the inclusive research project providing supplementary data. The purpose of the interviews will be to explore the personal perspective of co-researchers experiences of the inclusive research study.

Analysis

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Ethnographic data analysis begins with open coding and open memos where the researcher looks at all of the data collected, assigning labels and noting their initial thoughts and ideas. This is then refined through focused coding and focused memos where the initial thoughts and ideas are explored further and links made between them. (O’Reilly, 2009). The use of computer-assisted qualitative data software is increasingly used to analyse ethnographic data (O’Reilly, 2009). The use of such software is only a tool for managing data, the researcher must still analyse the data (O’Reilly, 2009). For the purpose of this study the computer-assisted qualitative data software, Nvivo, will be used to assist with data management and analysis. The research mentor with intellectual disability and the inclusive research team will be involved in the data analysis process. Koenig (2012) identified involvement of co-researchers in data analysis led to further insight into the analysis and influencing the direction of the analysis. The involvement of co-researchers in the data analysis process has also been referenced in other inclusive research projects and has involved varying levels of training in the data analysis process and providing data in accessible formats, for example, recordings of interviews as opposed to transcripts of interviews (Bjonsdottir & Svensdottir, 2008; Chapman, 2013; Koenig 2012). Member checking is often used to improve the validity of findings. It involves providing participants with the analysis of research findings to ensure it is an accurate reflection (Sandelowski, 2008). Cook and Inglis (2012) involved people with intellectual disability in the data analysis process using a similar method to member checking. A similar method will be applied to the proposed study where the primary researcher will undertake an initial analysis of findings and then present and discuss these with the inclusive research team over the course of a number of research meetings. Methods used in the studies mentioned above including training in data analysis and provision of data in accessible formats will also be incorporated into this study. It is important to note that themes will emerge during initial data analysis and these should be matched to a number of independent sources to support them ensuring the triangulation of data (Nagy Hesse-Biber & Leavy, 2011).

Results

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The results of the proposed study will be disseminated through the development of a thesis by the university researcher, as well as publications and conference presentations. In addition the results of the inclusive research study conducted with the inclusive research team will be disseminated in an accessible format to be determined by the team following completion of the data collection and analysis. It will also be important to consider communication of results to stakeholders associated with the study. Practical outcomes of the proposed study will include further training materials other inclusive research teams may apply to their inclusive research projects and an accessible research report on a topic of importance to people with intellectual disability. The outcomes of the proposed study will also make recommendations for future inclusive research studies. Most importantly though, this study will provide the opportunity for people with intellectual disability involved as co-researchers, to have a new experience through participating in the inclusive research team. The study will also provide an avenue for people with intellectual disability to claim their rights, particularly their right to be involved in research.

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Timelines

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Resources The resources required for this study are those associated with the training to be provided to the inclusive research team. Training costs will include: 

Venue



Printing of training materials



Stationery



Digital media devices (subject to availability of funds to purchase/hire)

In addition ongoing access to the following will be needed: 

Computer



Internet



Printer



Library resources

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