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Adults with Intellectual Disabilities and Their Carers as Researchers and Participants in a RCT

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Title: Adults with Intellectual Disabilities and Their Carers as Researchers and Participants in a RCT
Language: English
Authors: Turk, Vicky, Leer, Geoffrey, Burchell, Sarah
Source: Journal of Applied Research in Intellectual Disabilities. Jan 2012 25(1):1-10.
Availability: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
Peer Reviewed: Y
Physical Description: PDF
Page Count: 10
Publication Date: 2012
Document Type: Journal Articles
Reports - Research
Descriptors: Intervention, Mental Retardation, Researchers, Caregivers, Interviews, Feedback (Response), Outcomes of Treatment, Research Methodology, Science Experiments, Research Design, Scientific Methodology, Experimental Groups, Control Groups
DOI: 10.1111/j.1468-3148.2011.00643.x
ISSN: 1360-2322
Abstract: Background: This article describes the process of including people with intellectual disabilities (ID) and carers of people with ID as researchers and participants in randomised controlled trial (RCT) research. People with ID are rarely involved in research about their health, either as researchers or participants. Carers are often included as research informants, but family carers are rarely involved as researchers. Method: Four teams of researchers each comprising a researcher with ID, a supporting professional and a carer researcher, were recruited to complete a health intervention RCT. Accessible measures were selected and/or devised. Baseline interviews were completed by researchers with ID and/or carers of people with ID by asking participants with ID and/or carers of the participant about the health of the person with ID. Follow-up health interviews were administered after the intervention had been in place for a year. Results: The researchers completed 331 interviews with carers and 196 with participants with ID. Over 50% of participants with ID completed baseline assessments. Positive feedback on the process and outcomes was given by the researchers involved. Conclusion: The inclusion of people with ID both as researchers and as participants was achieved through an appropriate design, strong research partnerships, adequate and flexible resources, promotion of teamwork and a strong task focus.
Abstractor: As Provided
Entry Date: 2012
Accession Number: EJ949075
Database: ERIC
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  Value: <anid>AN0067730854;e0301jan.12;2019Jun04.08:07;v2.2.500</anid> <title id="AN0067730854-1">Adults with Intellectual Disabilities and their Carers as Researchers and Participants in a RCT. </title> <p>Background  This article describes the process of including people with intellectual disabilities (ID) and carers of people with ID as researchers and participants in randomised controlled trial (RCT) research. People with ID are rarely involved in research about their health, either as researchers or participants. Carers are often included as research informants, but family carers are rarely involved as researchers. Method  Four teams of researchers each comprising a researcher with ID, a supporting professional and a carer researcher, were recruited to complete a health intervention RCT. Accessible measures were selected and/or devised. Baseline interviews were completed by researchers with ID and/or carers of people with ID by asking participants with ID and/or carers of the participant about the health of the person with ID. Follow‐up health interviews were administered after the intervention had been in place for a year. Results  The researchers completed 331 interviews with carers and 196 with participants with ID. Over 50% of participants with ID completed baseline assessments. Positive feedback on the process and outcomes was given by the researchers involved. Conclusion  The inclusion of people with ID both as researchers and as participants was achieved through an appropriate design, strong research partnerships, adequate and flexible resources, promotion of teamwork and a strong task focus.</p> <p>Keywords: people with intellectual disabilities; randomised controlled trial; inclusive methodology</p> <p>This article outlines how people with intellectual disability (ID) and carers of people with ID were employed as paid researchers in a randomised controlled trial (RCT) evaluation of a health intervention – the implementation of a personal health record ([<reflink idref="bib24" id="ref1">24</reflink>]). This facilitated the separate inclusion of adults with ID as full participants in the RCT. To the authors' knowledge, this is the first published RCT with an inclusive design involving people with ID as researchers and one of very few including them in an RCT as full research participants.</p> <p>The overall design, measures used and main RCT findings have been published ([<reflink idref="bib24" id="ref2">24</reflink>]). This article concentrates on the aspects of the design and methodology that facilitated inclusion of adults with ID as researchers and participants. As this was achieved through an innovative design that also included family carers as researchers, and, as the design had a strong emphasis on teamwork, elements of the carer researcher's contribution are also described.</p> <p>The national and local context is given, followed by practical details of how the research was designed, implemented and obstacles overcome. The strengths and limitations of the design are outlined, as identified by the researchers employed at the time, and from a retrospective perspective.</p> <p>People with ID are rarely included in research despite national guidance on improving user involvement in health research in general ([<reflink idref="bib7" id="ref3">7</reflink>]) and in learning disabilities services in particular ([<reflink idref="bib9" id="ref4">9</reflink>]; [<reflink idref="bib16" id="ref5">16</reflink>]). The slogan 'Nothing about us without us' (People First 1993) set the inclusion agenda across all areas, including research.</p> <p>Inclusive research has strong ties to emancipatory research ([<reflink idref="bib17" id="ref6">17</reflink>]), and the social model of disability. In the UK, a disabled people's movement emerged ([<reflink idref="bib2" id="ref7">2</reflink>]) led by researchers who were themselves physically, but not learning disabled ([<reflink idref="bib3" id="ref8">3</reflink>]). Emancipatory research conceptualizes people with disabilities as having power and control over the research process rather than being the passive recipients or 'objects' of research. To be truly emancipatory, it has been argued that the research agenda, the research funding and the way research is organized must all be within the control of people with disabilities and their democratic organizations and that the research must bring direct consequences of changing society for the better for disabled people ([<reflink idref="bib6" id="ref9">6</reflink>]). It has been argued that if research involving people with disabilities is initiated by others, it can only be described as 'participatory', rather than 'emancipatory' ([<reflink idref="bib30" id="ref10">30</reflink>]). [<reflink idref="bib25" id="ref11">25</reflink>] highlights the fact that people with learning disabilities will struggle to undertake 'emancipatory' research in the sense that Zarb uses. She recommends the use of the term 'inclusive' research to refer to a range of research approaches, including emancipatory and participatory research, in which people with learning disabilities are involved as more than just research subjects or respondents. She has warned however that there is a 'near obsession with process' in inclusive research which 'often threatens to engulf the very real need for significant content and outcomes' ([<reflink idref="bib26" id="ref12">26</reflink>]).</p> <p>There are now many examples of inclusive research highlighting the benefits and tensions of involving people with ID in the research process and as research participants (e.g. [<reflink idref="bib26" id="ref13">26</reflink>]; [<reflink idref="bib27" id="ref14">27</reflink>]; [<reflink idref="bib10" id="ref15">10</reflink>]). [<reflink idref="bib18" id="ref16">18</reflink>] argues that involving people with ID as researchers ensures that some of the barriers are broken down between interviewer and interviewee. To date, most inclusive research has involved people with ID in qualitative research, with small sample sizes, and often as co‐researchers rather than as researchers in their own right (e.g. [<reflink idref="bib4" id="ref17">4</reflink>]). Often, the research is based on service evaluations (e.g. [<reflink idref="bib29" id="ref18">29</reflink>]), or on developing instruments or inclusive methodologies (e.g. [<reflink idref="bib5" id="ref19">5</reflink>]).</p> <p>Even where research has been inclusive, most has been written up by the professionals and academics and not by the people with ID, leading to further debate about the role of the non‐disabled researchers ([<reflink idref="bib28" id="ref20">28</reflink>]), and discussions as to the internal tensions that can occur ([<reflink idref="bib14" id="ref21">14</reflink>]). Few research studies have been published in academic journals in an accessible form (e.g. [<reflink idref="bib11" id="ref22">11</reflink>]).</p> <hd id="AN0067730854-2">The local context to the research</hd> <p>In south east London, local clinicians had developed a personal health record, called the Personal Health Profile (PHP) for people with ID and their carers. The PHP has sections on all aspects of health, enabling adults with ID to see how the concept of health and disability can be broken down into many different components and/or aspects, e.g. teeth, skin, diet. It had been implemented in GP practices, employing an adult with ID as one of the two trainers. A formal audit had indicated positive outcomes in areas such as adults with ID/carer empowerment, ease of use and improved communication between adults with ID/carers and their general practitioners ([<reflink idref="bib22" id="ref23">22</reflink>]).</p> <p>The same local clinicians had been running research workshops for people with ID and had gained experience of presenting and simplifying research concepts and involving people with ID in research projects.</p> <p>In [<reflink idref="bib8" id="ref24">8</reflink>], the DoH launched a Primary Care Studies Programme as part of a 'Consumers in Research' agenda. A local research steering group was formed to submit a grant proposal to the London programme to evaluate the implementation of the PHP using a cluster randomization design. The grant criteria required consumer involvement and the development of local research capacity. As the PHP is designed as a user tool, involving the people to whom it was targeted in the evaluation seemed both logical and necessary.</p> <p>The grant applicants included two clinicians from the local NHS Foundation Trust (first and third authors). They were joined by the chair of a local self‐advocacy group for people with ID (second author) and representatives from two local Mencap groups, one agreeing to focus on carer issues, the other on issues for people with ID. Commissioners from the two local NHS primary care services were also part of the grant submission and research steering group. The principal investigator (first author) wanted research help with the primary care aspects of the design, and the local university became the main academic partner, adding expertise in primary care and emancipatory research. Three senior academics joined the research steering group (e.g. fifth author). Another local research organization, STaRNet, provided invaluable expertise in GP research and cluster randomization designs (sixth author).</p> <p>It was felt that the main challenge that had to be addressed in a design including adults with ID as researchers, was to ensure all elements were ethical and non‐exploitative, e.g. the potential researchers had to be able to understand the research, and the tasks had to be reasonable and realistic for someone with ID to complete. To us, this entailed:</p> <p></p> <p>• 1</p> <p></p> <ulist> <item> Enabling applicants for the researcher posts to have a realistic understanding of the nature, demands and time limited nature of the post they might chose to apply for.</item> <p></p> </ulist> <p>• 2</p> <p></p> <ulist> <item> Ensuring thorough research training, as there were unlikely to be many local people with ID with existing research skills and experience.</item> <p></p> </ulist> <p>• 3</p> <p></p> <ulist> <item> Ensuring alternatives were available to achieve tasks that it would not be reasonable to expect a researcher with ID to manage, e.g., drive to visits, record responses, complete expense forms, analyse results.</item> <p></p> </ulist> <p>• 4</p> <p></p> <ulist> <item> Building adequate time, flexibility and support into the design to allow the researchers to learn, carry out and end the task.</item> <p></p> </ulist> <p>• 5</p> <p></p> <ulist> <item> Attending to practical aspects such as salaries not impacting negatively on benefits received.</item> </ulist> <p>The main challenges we felt needed addressing when including people with ID in research as full participants included:</p> <p></p> <p>• 1</p> <p></p> <ulist> <item> Selecting or developing accessible instruments using techniques and methods developed to help people with ID complete research interviews. These include combining open and closed questions and using symbols and pictures ([<reflink idref="bib15" id="ref25">15</reflink>]; [<reflink idref="bib12" id="ref26">12</reflink>]; [<reflink idref="bib19" id="ref27">19</reflink>]; [<reflink idref="bib21" id="ref28">21</reflink>]).</item> <p></p> </ulist> <p>• 2</p> <p></p> <ulist> <item> Enabling as many people as possible with ID to be able to participate or contribute, not just those with mild/borderline ID. This involved an inclusive design whereby the people with ID were identified from the local ID registers of people known to health and social care. Health information could then be obtained from them either directly, via their carers, or both, depending on their availability, the consent of the person with ID and/or their carer, and their ability to complete the accessible interview ([<reflink idref="bib24" id="ref29">24</reflink>]).</item> <p></p> </ulist> <p>• 3</p> <p></p> <ulist> <item> Reliability and validity issues. We wanted to check that the people with greater degrees of ID were able to participate reliably. We also needed to check whether the new measures we used gave reliable information. We were aware that the reliability of peoples' responses needed to be distinguished from their validity, as people with ID may not have adequate knowledge to understand all the research construct(s) being measured.</item> </ulist> <p>Our overall rationale was that if people with ID were involved in devising, piloting and administering the research interview, it was likely the interview would be understood by the target audience. Similarly, if research interviewers with ID were taught to administer the research instruments reliably, it was likely that research participants with ID would be able to respond reliably. The design ensured health assessment information was asked in a simplified way to allow people with ID with different levels of ability to respond, e.g. plain language, yes/no response options, accompanying symbols and pictures. It was hoped these adaptations would allow people to participate who had previously been excluded from research.</p> <p>The grant application was successful, allowing three years funding for the inclusive RCT design. The project was one of 12 funded across London, all projects being provided with some additional support and training for the user involvement component (EQUIP 2004) and a separate evaluation of the consumer involvement undertaken by Peninsula Medical School ([<reflink idref="bib1" id="ref30">1</reflink>]).</p> <hd id="AN0067730854-3">Overview of the design, and how it was implemented and made accessible</hd> <p>As the main research study was an evaluation of the implementation of PHPs in primary care, GPs were trained in their use before introducing the PHP to adults with ID and their carers. A cluster randomized controlled trial design therefore needed to be chosen with GPs being the unit of randomization.</p> <p>This complex terminology and design was explained to people in simple words and pictures as follows: GPs were invited to join the study, and adults with ID identified from the registers from all the practices that agreed to participate. The adults with ID and/or their carers in these practices were then approached, and all those who wanted to be part of the study offered an interview to ask about their health knowledge. The GP practices were then split into two equally sized groups by someone unknown to the research interviewers, and one group trained in using the PHP and the other group not. The people with ID in the group of practices that were trained to use the PHP were then offered the PHP and helped to fill it in and use it. A year later, all people with ID in both groups were interviewed again to look for any changes in their health and health knowledge. It was hoped those who had a PHP would find out they needed to go to visit their GPs more often about health problems and go at least as often as most adults in the general population. It was worked out that if this occurred, interviews with 184 people from 40 GP practices would be needed to show that the increased visiting was because of having the PHP.</p> <p>Four teams of three researchers were appointed to work 1 day a week, each comprising an adult with ID (to interview research participants with ID), a health or Learning Disability Team professional (to support the adult with ID researchers with recording and coding responses) and a carer of people with ID (to interview the carers of participating people with ID). Two teams were employed together on each of two research days. A part‐time research administrator was appointed to coordinate the schedules and work of the four teams (fourth author), and a local senior clinician (third author) was seconded 2 days a week to supervise and manage the researchers and administrator. The principal investigator (first author) oversaw the project, remaining a local clinician in the learning disability service. An academic from the local university provided research supervision. The professionals were funded via secondments; all other post‐holders were employed through the host NHS trust but located in the local university. The steering group remained active throughout the research, providing advice and help when obstacles were encountered. All unsalaried members' expenses were paid in cash, and people were also paid in cash or gift vouchers for their time to attend meetings, training sessions, interviews, etc.</p> <p>The participants with ID were recruited from consenting GP practices in two boroughs in south east London and identified from the joint health/social services learning disability registers held in each borough. Consent to participate in the research by the person with ID and/or their carer was initiated by letter and/or phone, with formal consent following an individual meeting with more information provided about the research. Once all people with ID, and/or their carer, had been interviewed from a batch of GP practices, the research administrator submitted the names to an off‐site statistician to be randomized to intervention or control group, blind to the administrator and the researchers. The PHP was implemented in the intervention group by a separate clinical team including an adult with ID. Follow‐up interviews were held after the PHP had been implemented for a year in the intervention arm of the trial.</p> <hd id="AN0067730854-4">Aspects of design and methodology facilitating inclusion as researchers</hd> <p></p> <hd id="AN0067730854-5">Recruitment details and terms and conditions of employment</hd> <p>Detailed planning took place on the ethical and practical aspects of recruiting, training and supporting researchers with ID. It was necessary to ensure jobs were advertised in a way that people with ID and carers would have a realistic chance of seeing the adverts. This was carried out by putting notices in day services, local newsletters and carer venues and by speaking at self‐advocacy meetings and carer groups. Open sessions were held giving accessible information on the proposed research, and information on what the job would entail.</p> <p>All applicants for research interviewers attended two interviews, one formal and one practical. The task in the practical panel consisted of a simplified version of the health interview being proposed, i.e., the applicants for researchers with ID were supported to ask some simple interview questions to an interview panellist with ID, with another interview panellist recording the response.</p> <p>The four teams of three researchers (carer, person with ID and supporting professional) were all appointed for 1 day a week on two‐year contracts. They were all local, and all used services or were deliverers of these services. Eight of the twelve were women (all four supporting professionals, three carers and one person with ID). Three researchers (all with ID) came from an ethnic minority background. For two researchers with ID, it was their first paid job, and for two carer researchers, it was their first return to work after their child (now an adult with ID) had been born. The seconded professionals comprised a health visitor, community nurse, social worker and sensory impairment worker.</p> <p>All researchers were employed for short research days to facilitate access to off peak transport, help researchers with ID and carer researchers overcome the problem of salaries resulting in benefits being lost, and reduce tiredness and overload. Money was budgeted to provide taxis whenever needed to get to, from and between community appointments. Extra days were anticipated to be needed to cover higher levels of sickness and carer leave that might occur and were budgeted for accordingly.</p> <hd id="AN0067730854-6">Training for the research interviews and other support provided to the researchers</hd> <p>The four teams of three researchers appointed were given a detailed induction and general research and interview training. They were involved in the piloting of the research measures and were then given specific training on administering the final measures adopted. With support from the senior clinical researcher and research administrator, they quickly developed into supportive teams as their induction and training progressed. Plenty of time and support was included to help the researchers with ID learn the tasks they might find difficult, e.g., coding participants' responses, data entry. As they always had a supporting professional with them, many tasks were carried out together, fostering teamwork. Individual supervision from the senior clinician researcher was provided to all team members.</p> <p>Three areas of the interview required the most training. The first two were from the OK Checklist. One was the medication section (both carer version and adapted version) which was difficult as the researchers were largely unfamiliar with drug names and usage. The second was the sections on sexual health, urination and defecation, as most of the researchers found these questions embarrassing to ask. The third area was administering one of the questionnaires, (described later), called the Knowledge of Health Problems and Terminology (KHPT) where there was some complex terminology that required correct pronunciation and understanding. Once trained, however, the KHPT had the advantage that the identical instrument was administered to both carer and ID participants.</p> <p>The research administrator set up the interviews for the interviewers and also arranged taxis or travel schedules. Two interviews per day were usually completed to keep to the research schedule. As the interviewers were all local users/providers of services, care had to be taken to ensure they did not interview people they knew. The administrator helped provide a clear task focus with everyone knowing what they had to achieve, by when, and with charts documenting progress and providing supportive feedback throughout.</p> <p>Research teams would return to the office at the end of each research day and code their interviews. Unfinished coding was completed later when a cancellation occurred. This time proved very useful for problem solving and general team building/support.</p> <p>The clinical implementation period led to a short gap between the last baseline interviews and initial follow‐up ones. This gave time for the research teams to complete their coding, conduct some test–retest and inter‐rater reliability interviews, enter baseline interview data onto the computer and complete update training. The researchers asked, in particular, for extra help in asking the sexuality and personal questions, which many had continued to find embarrassing.</p> <p>For the follow‐up interviews, the researchers usually contacted the participant, or carer of the participant directly – where possible using the same researchers as for the baseline interview.</p> <hd id="AN0067730854-7">Ending of research contracts.</hd> <p>Help was built in from the beginning to prepare the researchers for the eventual end of the project, e.g., personal development plans, writing curriculum vitae. The cluster randomization element of the design led to delays in the implementation of PHPs that led to an overall delay in the research schedule. This meant the researchers had to leave before the results were fully analysed and therefore could not contribute fully to the interpretation of many of the findings. Workshops were held before they left to ensure their views were obtained and consent gained to inform them of eventual outcomes. An accessible version of the final report was produced and circulated and some social occasions and a second workshop held after the research funding period had ended.</p> <hd id="AN0067730854-8">Aspects of design and methodology facilitating inclusion as participants</hd> <p></p> <hd id="AN0067730854-9">Research measures</hd> <p>Two newly created or adapted measures were used, described below. The first was specifically modified to make it accessible for participants with ID to complete, and the second was a health problems checklist that was included as a simple outcome measure to see whether those with a PHP at follow‐up had improved knowledge of health terminology and their own health problems.</p> <p> <bold>1.</bold> An adapted version of the OK Health Checklist Assessment (permission given from its authors, [<reflink idref="bib13" id="ref31">13</reflink>]). The accessible version covered the same topics, in the same order, but used simplified language/concepts with accompanying pictorial representation, usually symbols. All questions were asked verbally and in a manner that the answer could usually be given by using one of three simple response categories. Each response option was accompanied verbally, by a written word, and by a symbol. These were (<reflink idref="bib1" id="ref32">1</reflink>) 'yes' (tick symbol), (<reflink idref="bib2" id="ref33">2</reflink>) 'no' (cross symbol) and (<reflink idref="bib3" id="ref34">3</reflink>) 'don't know' (question mark symbol). The three response options were mounted onto small open top cardboard gift bags. The health questions asked were supported by pictures or symbols that were individually laminated and attached with Velcro to the interview materials. They could be detached and posted into the response boxes. Some questions/concepts such as 'do you hear voices when no‐one is there?' were harder to find a suitable accompanying picture (a picture of ear and sound waves was chosen) than others, e.g., 'do you wear glasses?' where a picture of spectacles was added.</p> <p> <bold>2.</bold> sA terminology checklist was devised called the Knowledge of Health Problems and Terminology (KHPT). The idea for this instrument arose from the steering group member with ID who reported the section headings from the PHP helping him to know what health problems to look for, e.g., sections on teeth, feet and skin. The resulting measure, the KHPT, detailed types of health problems and asked the participants with ID and/or their carer whether they had this problem now, or in the past. It comprised 12 main categories (e.g. skin problems) and 36 category items (e.g. for skin, psoriasis, eczema and 'other' skin problems). No simplifications to language or additional pictures were included with this instrument.</p> <hd id="AN0067730854-10">Reliability measures</hd> <p>Additional test–retest interviews were conducted 2 weeks apart for people not included in the actual research. Inter‐rater coding reliability was checked on actual interview data by selecting three interviews from each of the four carer researchers and researchers with ID.</p> <p>Four questions were devised by the researchers to check the comprehension of participants with ID at the beginning of the interview and encourage use of the three response option boxes provided for the adapted OK Health Checklist. These were 'am I sitting down?' (To encourage people to use the 'yes' card), 'did I have breakfast today?' (To encourage use of the 'don't know' card), and 'am I wearing a hat?' (To encourage use of the 'no' card) and 'is it raining outside?' (To test the reliability of the response). The pilot studies revealed people with ID could fail one or more of these questions and give reliable responses to simple interview questions, e.g., 'Do you go to a day centre?''What do you like to eat?''What do you like to drink?' A pragmatic decision was therefore taken to give the whole interview to all participants with ID who wanted to complete it. Participants with ID who failed one or more of the reliability question, who had a lot of missing data on any single questionnaire (50% or more) or whose interviewers raised reliability concerns, had their data scrutinized and either sections/instruments or the whole interview data omitted as judged necessary (details in [<reflink idref="bib23" id="ref35">23</reflink>]). As the KHPT contained some complex terminology, it had the most missing data and led to the most exclusion of data.</p> <hd id="AN0067730854-11">Research outcomes – processes and product</hd> <p></p> <hd id="AN0067730854-12">Retention of the researchers appointed</hd> <p>During the baseline interviews, one supporting professional and one researcher with ID left (from two different teams). The supporting professional (sensory impairment worker) dropped out early because of pressure in her substantive post and was replaced by a female behaviour specialist. The researcher with ID dropped out near the end of the baseline interviews because of a deterioration in pre‐existing mental health problems. He was not replaced as, by this stage, it was calculated that the remaining interviews could be completed by the remaining three researchers with ID.</p> <p>The research administrator left after the baseline interviews, and no suitable local person could be identified as a replacement. The post therefore went out to external advert and a new post‐holder appointed (the only non‐local appointment). Flexible use of the grant, coupled with under spend from the delay in recruiting to the vacancy, enabled the replacement administrator to be employed full time.</p> <hd id="AN0067730854-13">Numbers of research participants interviewed by researchers</hd> <p>Of the 201 participants with ID and/or their carers who participated in the baseline interviews, 108 participants with ID attempted the initial interview, 54% of the total sample. The number of participants interviewed is shown in Table 1.</p> <p>1  Sample sizes</p> <p> <ephtml> <table><thead valign="bottom"><tr><th valign="bottom">Interview type</th><th>Baseline</th><th>Follow‐up</th></tr><tr><th><italic>N</italic> (%)</th><th><italic>N</italic> (%)</th></tr></thead><tbody valign="top"><tr><td>Carer only</td><td>93 (46)</td><td>90 (55)</td></tr><tr><td>Adults with ID only</td><td>33 (16)</td><td>19 (12)</td></tr><tr><td>Carer and adults with ID</td><td>75 (37)</td><td>54 (33)</td></tr><tr><td>Totals</td><td>201</td><td>163</td></tr></tbody></table> </ephtml> </p> <p>By follow‐up, 163 of the 201 participants remained, just below the number recommended by the power calculation. Follow‐up information came directly from 73 participants with ID (45%) there being more drop outs from the participants with ID (<reflink idref="bib38" id="ref36">38</reflink>) than from carers (<reflink idref="bib24" id="ref37">24</reflink>). An analysis of the demographic information of the 201, the 163 completers and the 38 participants with ID who dropped out showed that the 38 who dropped out were significantly more likely not to have had a carer interview, to visit the GP alone and to live on their own or with families. Further demographic information on the sample and the outcome of the PHP evaluation is published elsewhere ([<reflink idref="bib24" id="ref38">24</reflink>]).</p> <p>The design meant that 108 participants with ID were interviewed at baseline and 73 at follow‐up, the corresponding numbers for carer participants being 168 and 144, respectively. An additional 19 interviews with carers and 15 with people with ID (all non‐participants in the research) were conducted as test–retest interviews. Overall, the researchers with ID completed a total of 196 research interviews, and the carers completed 331 research interviews.</p> <hd id="AN0067730854-14">Nature and quantity of support provided</hd> <p>The support provided to the researchers was very much as envisaged at the outset in the research design. The nature of the recruitment process ensured that all appointed people had the basic skills required for their post. The seconded professionals and carers all had extensive knowledge of the support requirements of adults with ID and were enthusiastic about the innovativeness of the research design. There was generally a happy and supportive atmosphere throughout, with the research administrator holding a key role in facilitating teamwork, linking people across the two separate research days and ensuring any problems that occurred were addressed early.</p> <p>The problems that did occur were largely predictable from the background of the researchers appointed. Those with ID had some health problems (one had epilepsy and another mental health problems). They sometimes had problems with public transport unreliability or home commitments, and one person had minor timekeeping difficulties. The carers' problems mainly revolved around their caring responsibilities, especially when the person they cared for was ill – a significant issue for one carer. They soon began organizing their appointments themselves and made up lost hours by being flexible with interview times where possible. The supporting professionals brought time management issues, with the stresses and strains of their substantive posts.</p> <hd id="AN0067730854-15">Views of research interviewers</hd> <p>Information was obtained from all the researchers via workshops before and after they left on the process of involvement, and the skills and experiences gained. They also expressed their opinions on the PHPs based on their interview experiences. These two areas are covered below.</p> <hd id="AN0067730854-16">Views on inclusive process and skills learned</hd> <p>The researchers' comments indicated the degree of teamwork experienced with positive statements on 'working as an equal team', 'giving ideas', 'respect of each other and circumstances' and 'enjoying humour and fun (wind up)'. Unhappy experiences were recounted of people leaving 'wondering if they will be OK, wondering if we will manage without them'. There were a lot of task focussed comments such as 'managing to keep to a tight schedule', 'reading interview details properly', 'getting used to long words', 'learning the timetables and trains to get to interviews', 'listening and explaining consent,''improving signing' and 'finding it difficult asking personal questions'. There were a number of comments about the positive experience of interviewing so many different people such as 'being able to have an understanding about the lives of the people you are interviewing' and 'working in peoples' homes and different parts of society'. Concern for personal safety was mentioned as a problem when visiting participants in some deprived neighbourhoods.</p> <p>We asked what advice we could give others about what had been learned about the process of involvement in the research. The researchers highlighted what they thought we had got right:</p> <p></p> <p>• •</p> <p></p> <ulist> <item> Time for training at the beginning;</item> <p></p> </ulist> <p>• •</p> <p></p> <ulist> <item> Transport arrangements;</item> <p></p> </ulist> <p>• •</p> <p></p> <ulist> <item> Support between staff;</item> <p></p> </ulist> <p>• •</p> <p></p> <ulist> <item> Flexible timings;</item> <p></p> </ulist> <p>• •</p> <p></p> <ulist> <item> Preparing for the end of the project.</item> </ulist> <p>The things identified as having to be learned the hard way included:</p> <p></p> <p>• •</p> <p></p> <ulist> <item> Sticking to the priorities;</item> <p></p> </ulist> <p>• •</p> <p></p> <ulist> <item> Allowing time for participant delays;</item> <p></p> </ulist> <p>• •</p> <p></p> <ulist> <item> Putting more time in for coding;</item> <p></p> </ulist> <p>• •</p> <p></p> <ulist> <item> Needing more training throughout.</item> </ulist> <p>The area that caused the most challenge/difficulty was the asking of personal/intimate questions. Two of the three researchers with ID and one of the carer researchers found this very hard. The researchers reported the participants often disliked these questions and thought this may have led to the drop out of some participants with ID.</p> <hd id="AN0067730854-17">Views on the PHP and research outcomes</hd> <p>The researchers were all committed to the PHP and gave comments on how the PHP could be improved to make it more likely to be used. They suggested an introduction sheet to the PHP for professionals to explain its use and ask them to write in it. The researchers wanted to know the final outcome of the research, being concerned that it appeared from their follow‐up interviews that the PHP was not being used as much as hoped/anticipated. The carer interviewers commented on problems with some of the paid carer's knowledge and of their preference to use their own recording systems, e.g., traditional case‐notes, rather than the PHP.</p> <hd id="AN0067730854-18">Discussion</hd> <p>The research teams of people with ID, carers and supporting professionals became supportive units very quickly. It was felt that this was because of the research design and appointment of suitable workers, all having a lot of experience of engagement with people with ID and all being very clear on the task required of them. Steering group members also added expertise needed to overcome problems, e.g., the GP member did some personal telephoning to GPs after an initial reluctance of GP practices to participate. The researchers themselves identified many strengths of the research design. Their feedback had a strong focus on the positive elements of teamwork. They reported feeling supported, learning from each other and respecting each other and each other's views. They were very task focussed, kept to strict interview schedules and felt committed to the concept of personal health records.</p> <p>The presence of two research teams on each of two main research days allowing much needed flexibility when sickness occurred, where annual leave needed to be taken, and when one researcher with ID dropped out. Each day had its own particular flavour, e.g., home‐made muffins became a regular feature on one of the days!</p> <p>Although health information was successfully obtained from over half the participants with ID at baseline, a differential drop out of more participants with ID than carers was found at follow‐up. It appeared to be the more able/independent participants with ID who were more likely to drop out. This was felt to be because of two factors. Firstly, they were more likely to have an occupation and be socially mobile and therefore more likely to have changed house/GP/jobs. Secondly, some of the participants found it embarrassing to talk about some personal areas (e.g. sexual health, bowels and urine).</p> <p>The extent of embarrassment of the researchers and participants in asking and answering personal/intimate questions had not been anticipated and needs to be considered in future research. It may be a contributing factor to low levels of attendance at GPs for health promotion activities such as cervical screening (e.g. [<reflink idref="bib20" id="ref39">20</reflink>]).</p> <p>The research ran over time because of the process of cluster randomization, not the inclusive methodology. This was because all participants from a GP practice had to be interviewed before the practice could be sent for randomization into the intervention or control group. Delays with interviewing any one participant in a practice could delay the overall research schedule. As it was hard to reach the required number of participants suggested by the power calculation, it was not desirable to lose participants unless absolutely unavoidable. In the event, although there were 201 people in the initial sample, there were only 163 by follow‐up, this being lower than the recommended sample size of 184. As the PHP was eventually found to raise GP visiting rates only slightly more in the PHP than non‐intervention group (non‐significant), this factor was not critical to the final outcome ([<reflink idref="bib24" id="ref40">24</reflink>]).</p> <p>The schedule and budget did not allow any extension to the research time period. This meant that most of the statistical analysis and all of the writing up of the results in academic journals had to be completed after the teams of researchers had left. As a consequence, the results took longer than expected to be analysed, written up and published, as those remaining involved had all returned to their substantive posts. The current inclusion paper was neglected as it did not seem right to describe and discuss the inclusive nature of the research without a more significant contribution from the carer and ID researchers. However, the richness of the information obtained from the workshops held, coupled with occasional meetings with some of the contributors afterwards, eventually led to the current paper being written.</p> <p>One weakness identified was that too many questions were included in the interviews, leading to excessive numbers of variables being coded and available for analysis. It appears that the egalitarian nature of the design may have made it hard for the researchers and research supervisor to keep to the main research questions, with passionate and persuasive arguments being made by the different researchers for the inclusion of additional information, e.g., carer stress measures.</p> <p>Many other things were learnt the hard way. The choice, inclusion and coding of reliability questions did not work. In retrospect, the questions were silly and often led to participants being puzzled or giving humorous replies that were difficult to code. In addition, one of the four questions, 'is it raining?', was mistakenly allowed to be coded by the actual response rather than the accuracy of this response, requiring it to be dropped from consideration!</p> <p>Staff leaving was demoralizing for some of the researchers, although they all responded well and professionally and made new joiners welcome. All found some parts of the research process hard, e.g., the tough sections such as medicines, the terminology of the KHPT, the intimate care questions and coding the responses obtained.</p> <p>The feedback from researchers was overwhelmingly positive. All were more concerned about learning the final outcomes of the research than with ending their contracts.</p> <hd id="AN0067730854-19">Conclusion</hd> <p>People with ID and carers of people with ID were integral to the research design as grant applicants, members of the research steering committee and as paid researchers. They were also involved as full research participants. They were fully involved in the recruitment of all the research staff appointed, and these research staff were involved in the devising of research measures, data coding and entry, reliability measures and office administration. In the latter stages of their contracts, the researchers were involved in the interpretation of the early results, and the dissemination of the research process and initial findings. Many steering group members have remained involved long after the steering group officially disbanded, including the chair of the local self‐advocacy group (second author). The partnerships forged and teamwork occurring throughout the research process, combined with the strong task focus, appear to have been the most critical design factors in enabling the research to be completed successfully.</p> <p>The partnerships also ensured the inclusive design was innovative but realistic, and appropriate resources available to support this. The funding provided inbuilt flexibility to facilitate the creative solutions sometimes needed to overcome hurdles that occurred during the research period.</p> <p>Role clarity was also important, with everyone knowing what they had to achieve, by when, and with regular visual monitoring of progress. The commitment that emerged from everyone involved to personal health profiles being evaluated, and to the inclusive design, also appeared to add to the overall enthusiasm and successful completion of the project.</p> <p>It would have been cheaper and easier to employ paid professional researchers to carry out the research. However, all those involved believe the benefits outweighed the costs in terms of the richness of the experience and the outcomes obtained.</p> <p>It was very exciting to be part of such an innovative research process. While the research may not have met the strict definition of 'emancipatory' research, it has hopefully raised the bar for other researchers in demonstrating that people with ID can make a full contribution to rigorous mainstream quantitative research methodologies such as RCTs.</p> <hd id="AN0067730854-20">Acknowledgments</hd> <p>Many thanks to all the people with ID and carers who participated. Also thanks to the researchers with ID, carer and professional researchers who worked so well together as a research team. Invaluable input on the steering group was provided by organizations including Respect in Bexley, STaRNet, Bexley and Greenwich Mencap, and University of Greenwich. Many thanks to all the other helpers and volunteers who made valuable contributions.</p> <hd id="AN0067730854-21">Source of Funding</hd> <p>This research was funded by the NHS Executive London, Research & Development Programme. The views expressed in the publication are those of the authors and not necessarily those of the NHS Executive or the Department of Health.</p> <hd id="AN0067730854-22">Ethics approval</hd> <p>The project was approved by the Bexley Local Research Ethics Committee in November 2001 (ref BREC/01/05).</p> <hd id="AN0067730854-23">Correspondence</hd> <p>Any correspondence should be directed to Dr Vicky Turk, Bexley Learning Disability Team, Stuart House, 45‐47 Halfway Street, Sidcup, Kent DA15 8LH, UK (e‐mail: vicky.turk@oxleas.nhs.uk).</p> <ref id="AN0067730854-24"> <title> References </title> <blist> <bibl id="bib1" idref="ref30" type="bt">1</bibl> <bibtext> Barnard A., Carter M., Britten N., Purtell R., Wyatt K. & Ellis A. (2008) An Evaluation of Consumer Involvement in the London Primary Care Studies Programme. Peninsula Medical School University of Exeter and Plymouth, Exeter.</bibtext> </blist> <blist> <bibl id="bib2" idref="ref7" type="bt">2</bibl> <bibtext> Barnes C. (2004) Reflections on doing emancipatory disability research. In: Disabling Barriers – Enabling Environments, 2nd edn (eds J. Swain, S. French, C. Barnes & C. Thomas), pp. 47 – 53. Sage Publications, London.</bibtext> </blist> <blist> <bibl id="bib3" idref="ref8" type="bt">3</bibl> <bibtext> Barton L. & Oliver M. (1997) Disability Studies: Past, Present and Future. The Disability Press, Leeds.</bibtext> </blist> <blist> <bibl id="bib4" idref="ref17" type="bt">4</bibl> <bibtext> Bjornsdottir K. & Svensdottir A. S. (2008) Gambling for capital: learning disability, inclusive research and collaborative life histories. British Journal of Learning Disabilities 36, 263 – 270.</bibtext> </blist> <blist> <bibl id="bib5" idref="ref19" type="bt">5</bibl> <bibtext> Brooks M. & Davies S. (2007) Pathways to participatory research in developing a tool to measure feelings. British Journal of Learning Disabilities 36, 128 – 133.</bibtext> </blist> <blist> <bibl id="bib6" idref="ref9" type="bt">6</bibl> <bibtext> Chappell A. (2000) Emergence of participatory methodology in learning difficulty research: understanding the context. British Journal of Learning Disabilities 28, 38 – 43.</bibtext> </blist> <blist> <bibl id="bib7" idref="ref3" type="bt">7</bibl> <bibtext> Consumers in NHS Research (2000) Involving Consumers in Research and Development in the NHS: Briefing Notes for Researchers. Consumers in NHS Research Support Unit, Eastleigh, UK.</bibtext> </blist> <blist> <bibl id="bib8" idref="ref24" type="bt">8</bibl> <bibtext> Department of Health (1999) Once a Day. Department of Health, Wetherby.</bibtext> </blist> <blist> <bibl id="bib9" idref="ref4" type="bt">9</bibl> <bibtext> Department of Health (2003) Investing in General Practice: The new GMS Contract. Department of Health, Wetherby.</bibtext> </blist> <blist> <bibtext> Feldner C. (2007) People with learning disabilities as consumer researchers. Learning Disability Today 7, 9 – 14.</bibtext> </blist> <blist> <bibtext> Garbutt R., Tattersall J., Dunn J. & Boycott‐Garnett R. (2010) Accessible article: involving people with learning disabilities in research. British Journal of Learning Disabilities 38, 21 – 34.</bibtext> </blist> <blist> <bibtext> Holland A. & Meddis R. (1997) People living in community homes: their views. British Journal of Learning Disabilities 25, 68 – 72.</bibtext> </blist> <blist> <bibtext> Matthews D. & Hegarty J. (1997) The 'OK' health check: a health assessment checklist for people with learning disabilities. British Journal of Learning Disabilities 25, 138 – 143.</bibtext> </blist> <blist> <bibtext> 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.</bibtext> </blist> <blist> <bibtext> Minkes J., Townsley R., Weston C. & Williams C. (1995) Having a voice: involving people with learning difficulties in research. British Journal of Learning Disabilities 23, 94 – 97.</bibtext> </blist> <blist> <bibtext> Nocon A. (2006) Background Evidence for the DRC's Formal Investigation into Health Inequalities Experienced by People with Learning Disabilities and People with Mental Health Problems. Disability Rights Commission, London and Manchester.</bibtext> </blist> <blist> <bibtext> Oliver M. (1996) Understanding Disability: From Theory to Practice. Martin's Press Scholarly and Reference Division, New York.</bibtext> </blist> <blist> <bibtext> Rapley M. (1995) Black swans: conversation analysis of interviews with people with learning disabilities. Clinical Psychology Forum 84, 17 – 23.</bibtext> </blist> <blist> <bibtext> Stalker K. & Harris P. (1998) The exercise of choice by adults with intellectual disabilities: a literature review. Journal of Applied Research in Intellectual Disabilities 11, 60 – 76.</bibtext> </blist> <blist> <bibtext> Stein K. & Allen N. (1999) Cross sectional survey of cervical cancer screening in women with learning disability. British Medical Journal 318, 641.</bibtext> </blist> <blist> <bibtext> Stenfert‐Kroese B., Gillott A. & Atkinson V. (1998) Consumers with intellectual disabilities as service evaluators. Journal of Applied Research in Intellectual Disabilities 11, 116 – 128.</bibtext> </blist> <blist> <bibtext> Turk V. & Burchell S. (2003) Developing and evaluating personal health records for adults with learning disabilities. Tizard Learning Disability Review 8, 33 – 41.</bibtext> </blist> <blist> <bibtext> Turk V., Burchell S., Burrha S., Corney R., Elliott S., Kerry S., Molloy C., Painter K. & Pritchard P. (2007) Final Report to DOH. Oxleas NHS Library, Kent.</bibtext> </blist> <blist> <bibtext> Turk V., Burchell S., Burrha S., Corney R., Elliott S., Kerry S., Molloy C. & Painter K. (2010) An evaluation of the implementation of hand held health records with adults with learning disabilities: a cluster randomised control trial. Journal of Applied Research in Intellectual Disability 23, 100 – 111.</bibtext> </blist> <blist> <bibtext> Walmsley J. (2001) Normalisation, emancipatory research and inclusive research in learning disability. Disability & Society 16, 187 – 205.</bibtext> </blist> <blist> <bibtext> Walmsley J. (2004) Involving users with learning disabilities in health improvement: lessons from inclusive learning disability research. Nursing Inquiry 11, 54 – 64.</bibtext> </blist> <blist> <bibtext> Williams V. & England M. (2005) Supporting people with learning difficulties to do their own research. In: Involving Service Users in Health and Social Care Research, Chapter 3 (eds L. Lowes & I. Hulatt), pp. 30 – 40. Routledge, London.</bibtext> </blist> <blist> <bibtext> Williams V. & Simons K. (2005) More researching together: the role of nondisabled researchers in working with People First members. British Journal of Learning Disabilities 33, 6 – 14.</bibtext> </blist> <blist> <bibtext> Young A. F. (2006) Obtaining views on health care from people with learning disabilities and severe mental health problems. British Journal of Learning Disability 34, 11 – 19.</bibtext> </blist> <blist> <bibtext> Zarb G. (1992) On the road to Damascus: first steps toward changing the relations of disability research production. Disability and Society 11, 125 – 138.</bibtext> </blist> </ref> <aug> <p>By Vicky Turk; Geoffrey Leer; Sarah Burchell; Sukhjinder Khattram; Roslyn Corney and Gill Rowlands</p> <p>Reported by Author; Author; Author; Author; Author; Author</p> </aug> <nolink nlid="nl1" bibid="bib24" firstref="ref1"></nolink> <nolink nlid="nl2" bibid="bib16" firstref="ref5"></nolink> <nolink nlid="nl3" bibid="bib17" firstref="ref6"></nolink> <nolink nlid="nl4" bibid="bib30" firstref="ref10"></nolink> <nolink nlid="nl5" bibid="bib25" firstref="ref11"></nolink> <nolink nlid="nl6" bibid="bib26" firstref="ref12"></nolink> <nolink nlid="nl7" bibid="bib27" firstref="ref14"></nolink> <nolink nlid="nl8" bibid="bib10" firstref="ref15"></nolink> <nolink nlid="nl9" bibid="bib18" firstref="ref16"></nolink> <nolink nlid="nl10" bibid="bib29" firstref="ref18"></nolink> <nolink nlid="nl11" bibid="bib28" firstref="ref20"></nolink> <nolink nlid="nl12" bibid="bib14" firstref="ref21"></nolink> <nolink nlid="nl13" bibid="bib11" firstref="ref22"></nolink> <nolink nlid="nl14" bibid="bib22" firstref="ref23"></nolink> <nolink nlid="nl15" bibid="bib15" firstref="ref25"></nolink> <nolink nlid="nl16" bibid="bib12" firstref="ref26"></nolink> <nolink nlid="nl17" bibid="bib19" firstref="ref27"></nolink> <nolink nlid="nl18" bibid="bib21" firstref="ref28"></nolink> <nolink nlid="nl19" bibid="bib13" firstref="ref31"></nolink> <nolink nlid="nl20" bibid="bib23" firstref="ref35"></nolink> <nolink nlid="nl21" bibid="bib38" firstref="ref36"></nolink> <nolink nlid="nl22" bibid="bib20" firstref="ref39"></nolink>
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  Data: Adults with Intellectual Disabilities and Their Carers as Researchers and Participants in a RCT
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  Data: <searchLink fieldCode="AR" term="%22Turk%2C+Vicky%22">Turk, Vicky</searchLink><br /><searchLink fieldCode="AR" term="%22Leer%2C+Geoffrey%22">Leer, Geoffrey</searchLink><br /><searchLink fieldCode="AR" term="%22Burchell%2C+Sarah%22">Burchell, Sarah</searchLink>
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  Data: <searchLink fieldCode="SO" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22"><i>Journal of Applied Research in Intellectual Disabilities</i></searchLink>. Jan 2012 25(1):1-10.
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  Data: Wiley-Blackwell. 350 Main Street, Malden, MA 02148. Tel: 800-835-6770; Tel: 781-388-8598; Fax: 781-388-8232; e-mail: cs-journals@wiley.com; Web site: http://www.wiley.com/WileyCDA/
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  Data: 10
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  Data: 2012
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  Data: Journal Articles<br />Reports - Research
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  Data: <searchLink fieldCode="DE" term="%22Intervention%22">Intervention</searchLink><br /><searchLink fieldCode="DE" term="%22Mental+Retardation%22">Mental Retardation</searchLink><br /><searchLink fieldCode="DE" term="%22Researchers%22">Researchers</searchLink><br /><searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Interviews%22">Interviews</searchLink><br /><searchLink fieldCode="DE" term="%22Feedback+%28Response%29%22">Feedback (Response)</searchLink><br /><searchLink fieldCode="DE" term="%22Outcomes+of+Treatment%22">Outcomes of Treatment</searchLink><br /><searchLink fieldCode="DE" term="%22Research+Methodology%22">Research Methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Science+Experiments%22">Science Experiments</searchLink><br /><searchLink fieldCode="DE" term="%22Research+Design%22">Research Design</searchLink><br /><searchLink fieldCode="DE" term="%22Scientific+Methodology%22">Scientific Methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Experimental+Groups%22">Experimental Groups</searchLink><br /><searchLink fieldCode="DE" term="%22Control+Groups%22">Control Groups</searchLink>
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  Label: DOI
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  Data: 10.1111/j.1468-3148.2011.00643.x
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  Data: 1360-2322
– Name: Abstract
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  Data: Background: This article describes the process of including people with intellectual disabilities (ID) and carers of people with ID as researchers and participants in randomised controlled trial (RCT) research. People with ID are rarely involved in research about their health, either as researchers or participants. Carers are often included as research informants, but family carers are rarely involved as researchers. Method: Four teams of researchers each comprising a researcher with ID, a supporting professional and a carer researcher, were recruited to complete a health intervention RCT. Accessible measures were selected and/or devised. Baseline interviews were completed by researchers with ID and/or carers of people with ID by asking participants with ID and/or carers of the participant about the health of the person with ID. Follow-up health interviews were administered after the intervention had been in place for a year. Results: The researchers completed 331 interviews with carers and 196 with participants with ID. Over 50% of participants with ID completed baseline assessments. Positive feedback on the process and outcomes was given by the researchers involved. Conclusion: The inclusion of people with ID both as researchers and as participants was achieved through an appropriate design, strong research partnerships, adequate and flexible resources, promotion of teamwork and a strong task focus.
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        Value: 10.1111/j.1468-3148.2011.00643.x
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      – Text: English
    PhysicalDescription:
      Pagination:
        PageCount: 10
        StartPage: 1
    Subjects:
      – SubjectFull: Intervention
        Type: general
      – SubjectFull: Mental Retardation
        Type: general
      – SubjectFull: Researchers
        Type: general
      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: Interviews
        Type: general
      – SubjectFull: Feedback (Response)
        Type: general
      – SubjectFull: Outcomes of Treatment
        Type: general
      – SubjectFull: Research Methodology
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      – SubjectFull: Science Experiments
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      – SubjectFull: Research Design
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      – SubjectFull: Scientific Methodology
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      – SubjectFull: Experimental Groups
        Type: general
      – SubjectFull: Control Groups
        Type: general
    Titles:
      – TitleFull: Adults with Intellectual Disabilities and Their Carers as Researchers and Participants in a RCT
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            NameFull: Turk, Vicky
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            NameFull: Leer, Geoffrey
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            NameFull: Burchell, Sarah
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              Y: 2012
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              Value: 1360-2322
          Numbering:
            – Type: volume
              Value: 25
            – Type: issue
              Value: 1
          Titles:
            – TitleFull: Journal of Applied Research in Intellectual Disabilities
              Type: main
ResultId 1