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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.
Authors: Turk, Vicky (AUTHOR), Leer, Geoffrey (AUTHOR), Burchell, Sarah (AUTHOR), Khattram, Sukhjinder (AUTHOR), Corney, Roslyn (AUTHOR), Rowlands, Gill (AUTHOR)
Source: Journal of Applied Research in Intellectual Disabilities. Jan2012, Vol. 25 Issue 1, p1-10. 10p. 1 Chart.
Subjects: Caregivers, Interviewing, Research methodology, Intellectual disabilities, Randomized controlled trials, Research personnel, Human research subjects
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. [ABSTRACT FROM AUTHOR]
Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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Items – Name: Title
  Label: Title
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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> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Leer%2C+Geoffrey%22">Leer, Geoffrey</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Burchell%2C+Sarah%22">Burchell, Sarah</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Khattram%2C+Sukhjinder%22">Khattram, Sukhjinder</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Corney%2C+Roslyn%22">Corney, Roslyn</searchLink> (AUTHOR)<br /><searchLink fieldCode="AR" term="%22Rowlands%2C+Gill%22">Rowlands, Gill</searchLink> (AUTHOR)
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  Data: <searchLink fieldCode="JN" term="%22Journal+of+Applied+Research+in+Intellectual+Disabilities%22">Journal of Applied Research in Intellectual Disabilities</searchLink>. Jan2012, Vol. 25 Issue 1, p1-10. 10p. 1 Chart.
– Name: Subject
  Label: Subjects
  Group: Su
  Data: <searchLink fieldCode="DE" term="%22Caregivers%22">Caregivers</searchLink><br /><searchLink fieldCode="DE" term="%22Interviewing%22">Interviewing</searchLink><br /><searchLink fieldCode="DE" term="%22Research+methodology%22">Research methodology</searchLink><br /><searchLink fieldCode="DE" term="%22Intellectual+disabilities%22">Intellectual disabilities</searchLink><br /><searchLink fieldCode="DE" term="%22Randomized+controlled+trials%22">Randomized controlled trials</searchLink><br /><searchLink fieldCode="DE" term="%22Research+personnel%22">Research personnel</searchLink><br /><searchLink fieldCode="DE" term="%22Human+research+subjects%22">Human research subjects</searchLink>
– Name: Abstract
  Label: Abstract
  Group: Ab
  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. [ABSTRACT FROM AUTHOR]
– Name: AbstractSuppliedCopyright
  Label:
  Group: Ab
  Data: <i>Copyright of Journal of Applied Research in Intellectual Disabilities is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
PLink https://search.ebscohost.com/login.aspx?direct=true&site=eds-live&db=pbh&AN=67730854
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        Value: 10.1111/j.1468-3148.2011.00643.x
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      – SubjectFull: Caregivers
        Type: general
      – SubjectFull: Interviewing
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      – SubjectFull: Research methodology
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      – SubjectFull: Intellectual disabilities
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              Text: Jan2012
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              Y: 2012
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