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The involvement of people living with HIV in the development of HIV-specific or inclusive health instruments: a mixed methods review.

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Title: The involvement of people living with HIV in the development of HIV-specific or inclusive health instruments: a mixed methods review.
Authors: Lénárt, András, Engler, Kim, Lessard, David, Toupin, Isabelle, Rodríguez, Charo, Lebouché, Bertrand
Source: AIDS Care. Jul2020, Vol. 32 Issue 7, p801-810. 10p. 1 Diagram, 4 Charts.
Subjects: Conceptual structures, Content analysis, Factor analysis, Focus groups, Health status indicators, HIV-positive persons, Interprofessional relations, Interviewing, Medical referrals, Health outcome assessment, Patient participation, Systematic reviews
Abstract: Given recent emphasis on patient engagement in the choice and development of health measures to ensure their relevance, we examined the involvement of people living with HIV (PLHIV) in the creation of health measurement instruments that are HIV-specific or inclusive. A mixed studies review was conducted describing: 1) the sampling, recruitment and characteristics of involved PLHIV; 2) the methods and extent of their involvement; and 3) study author characterizations of this involvement. Five databases were searched in November 2015. Content and thematic analyses and a patient engagement framework guided the synthesis. Forty-one studies describing the development of thirty-nine instruments were reviewed. For many instruments, there was no reporting of the sampling method used for PLHIV involvement (87%), the recruitment setting (62%), the number of PLHIV involved (44%) or their characteristics (38%). Focus groups (38%) and interviews (36%) were the most common involvement methods. Involvement typically occurred at the patient engagement level of consultation (79%). Authors primarily characterized involvement as "contributing to instrument development" and, less frequently, as "a collaboration," "integral to instrument development" or "challenging." Patient engagement frameworks and standards for the content validation of patient-reported measures offer resources for systematic reporting, contextualizing involvement, diversifying approaches, and documenting their potentialities. [ABSTRACT FROM AUTHOR]
Copyright of AIDS Care is the property of Taylor & Francis Ltd 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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  Data: The involvement of people living with HIV in the development of HIV-specific or inclusive health instruments: a mixed methods review.
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  Data: <searchLink fieldCode="JN" term="%22AIDS+Care%22">AIDS Care</searchLink>. Jul2020, Vol. 32 Issue 7, p801-810. 10p. 1 Diagram, 4 Charts.
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  Data: Given recent emphasis on patient engagement in the choice and development of health measures to ensure their relevance, we examined the involvement of people living with HIV (PLHIV) in the creation of health measurement instruments that are HIV-specific or inclusive. A mixed studies review was conducted describing: 1) the sampling, recruitment and characteristics of involved PLHIV; 2) the methods and extent of their involvement; and 3) study author characterizations of this involvement. Five databases were searched in November 2015. Content and thematic analyses and a patient engagement framework guided the synthesis. Forty-one studies describing the development of thirty-nine instruments were reviewed. For many instruments, there was no reporting of the sampling method used for PLHIV involvement (87%), the recruitment setting (62%), the number of PLHIV involved (44%) or their characteristics (38%). Focus groups (38%) and interviews (36%) were the most common involvement methods. Involvement typically occurred at the patient engagement level of consultation (79%). Authors primarily characterized involvement as "contributing to instrument development" and, less frequently, as "a collaboration," "integral to instrument development" or "challenging." Patient engagement frameworks and standards for the content validation of patient-reported measures offer resources for systematic reporting, contextualizing involvement, diversifying approaches, and documenting their potentialities. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of AIDS Care is the property of Taylor & Francis Ltd 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.)
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        Value: 10.1080/09540121.2019.1653435
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              Text: Jul2020
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