Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions
Identifieur interne : 000068 ( Pmc/Curation ); précédent : 000067; suivant : 000069Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions
Auteurs :Source :
- JMIR Human Factors [ 2292-9495 ] ; 2015.
Abstract
Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth.
To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth.
Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis.
A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable interventions. It was not possible to determine the impact of participatory research on intervention effectiveness due to lack of outcome data. Planning for or having pre-existing implementation sites assisted implementation. The review also revealed a lack of theory-based design and process evaluation.
Consumer consultations helped shape intervention design. However, with little evidence of outcomes and a lack of implementation following piloting, the value of participatory research remains unclear.
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DOI: 10.2196/humanfactors.4361
PubMed: 27025279
PubMed Central: 4797690
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<record><TEI><teiHeader><fileDesc><titleStmt><title xml:lang="en">Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions</title></titleStmt><publicationStmt><idno type="wicri:source">PMC</idno><idno type="pmid">27025279</idno><idno type="pmc">4797690</idno><idno type="url">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4797690</idno><idno type="RBID">PMC:4797690</idno><idno type="doi">10.2196/humanfactors.4361</idno><date when="2015">2015</date><idno type="wicri:Area/Pmc/Corpus">000068</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Corpus" wicri:corpus="PMC">000068</idno><idno type="wicri:Area/Pmc/Curation">000068</idno><idno type="wicri:explorRef" wicri:stream="Pmc" wicri:step="Curation">000068</idno></publicationStmt><sourceDesc><biblStruct><analytic><title xml:lang="en" level="a" type="main">Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions</title></analytic><series><title level="j">JMIR Human Factors</title><idno type="eISSN">2292-9495</idno><imprint><date when="2015">2015</date></imprint></series></biblStruct></sourceDesc></fileDesc><profileDesc><textClass></textClass></profileDesc></teiHeader><front><div type="abstract" xml:lang="en"><sec sec-type="Background"><title>Background</title><p>Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth.</p></sec><sec sec-type="Objective"><title>Objective</title><p>To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth.</p></sec><sec sec-type="Methods"><title>Methods</title><p>Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis.</p></sec><sec sec-type="Results"><title>Results</title><p>A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable interventions. It was not possible to determine the impact of participatory research on intervention effectiveness due to lack of outcome data. Planning for or having pre-existing implementation sites assisted implementation. The review also revealed a lack of theory-based design and process evaluation.</p></sec><sec sec-type="Conclusions"><title>Conclusions</title><p>Consumer consultations helped shape intervention design. 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<front><journal-meta><journal-id journal-id-type="nlm-ta">JMIR Hum Factors</journal-id><journal-id journal-id-type="iso-abbrev">JMIR Hum Factors</journal-id><journal-id journal-id-type="publisher-id">JMIR Human Factors</journal-id><journal-title-group><journal-title>JMIR Human Factors</journal-title></journal-title-group><issn pub-type="epub">2292-9495</issn><publisher><publisher-name>Gunther Eysenbach</publisher-name><publisher-loc>JMIR Publications Inc., Toronto, Canada</publisher-loc></publisher></journal-meta><article-meta><article-id pub-id-type="pmid">27025279</article-id><article-id pub-id-type="pmc">4797690</article-id><article-id pub-id-type="publisher-id">v2i2e12</article-id><article-id pub-id-type="doi">10.2196/humanfactors.4361</article-id><article-categories><subj-group subj-group-type="heading"><subject>Original Paper</subject></subj-group><subj-group subj-group-type="article-type"><subject>Original Paper</subject></subj-group></article-categories><title-group><article-title>Participatory Research as One Piece of the Puzzle: A Systematic Review of Consumer Involvement in Design of Technology-Based Youth Mental Health and Well-Being Interventions</article-title></title-group><contrib-group><contrib contrib-type="editor"><name><surname>Eysenbach</surname><given-names>Gunther</given-names></name></contrib></contrib-group><contrib-group><contrib contrib-type="reviewer"><name><surname>Zelenko</surname><given-names>Oksana</given-names></name></contrib></contrib-group><contrib-group><contrib id="contrib1" contrib-type="author" corresp="yes"><name><surname>Orlowski</surname><given-names>Simone Kate</given-names></name><degrees>BSc,BEd,GDipPsych(Hons)</degrees><xref ref-type="aff" rid="aff1">1</xref><address><institution>Flinders Human Behaviour & Health Research Unit</institution><institution>Department of Psychiatry</institution><institution>Flinders University</institution><addr-line>Margaret Tobin Centre, FMC</addr-line><addr-line>Sturt Road</addr-line><addr-line>Bedford Park, 5042</addr-line><country>Australia</country><phone>61 8 8404 2615</phone><fax>61 8 8404 2101</fax><email>simone.orlowski@flinders.edu.au</email></address><xref ref-type="aff" rid="aff2">2</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0001-8395-1087</contrib-id></contrib><contrib id="contrib2" contrib-type="author"><name><surname>Lawn</surname><given-names>Sharon</given-names></name><degrees>BA,Dip Ed,MSW,PhD</degrees><xref ref-type="aff" rid="aff1">1</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0002-5464-8887</contrib-id></contrib><contrib id="contrib3" contrib-type="author"><name><surname>Venning</surname><given-names>Anthony</given-names></name><degrees>PhD,MPsych(Clinical),B Soc Sci,B Health Sc Hons</degrees><xref ref-type="aff" rid="aff1">1</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0003-1885-2423</contrib-id></contrib><contrib id="contrib4" contrib-type="author"><name><surname>Winsall</surname><given-names>Megan</given-names></name><degrees>BSc</degrees><xref ref-type="aff" rid="aff1">1</xref><xref ref-type="aff" rid="aff2">2</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0001-5696-0578</contrib-id></contrib><contrib id="contrib5" contrib-type="author"><name><surname>Jones</surname><given-names>Gabrielle M</given-names></name><degrees>BHlthSc</degrees><xref ref-type="aff" rid="aff3">3</xref><xref ref-type="aff" rid="aff4">4</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0003-3102-1771</contrib-id></contrib><contrib id="contrib6" contrib-type="author"><name><surname>Wyld</surname><given-names>Kaisha</given-names></name><degrees>BPsych (Hons)</degrees><xref ref-type="aff" rid="aff1">1</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0001-5153-1272</contrib-id></contrib><contrib id="contrib7" contrib-type="author"><name><surname>Damarell</surname><given-names>Raechel A</given-names></name><degrees>BA,GDipInfoStud</degrees><xref ref-type="aff" rid="aff5">5</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0002-6737-7537</contrib-id></contrib><contrib id="contrib8" contrib-type="author"><name><surname>Antezana</surname><given-names>Gaston</given-names></name><degrees>BPsych (Hons)</degrees><xref ref-type="aff" rid="aff1">1</xref><xref ref-type="aff" rid="aff2">2</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0002-4257-0779</contrib-id></contrib><contrib id="contrib9" contrib-type="author"><name><surname>Schrader</surname><given-names>Geoffrey</given-names></name><degrees>PhD,MBBS,FRANZCP</degrees><xref ref-type="aff" rid="aff1">1</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0002-2504-8102</contrib-id></contrib><contrib id="contrib10" contrib-type="author"><name><surname>Smith</surname><given-names>David</given-names></name><degrees>PhD,BSC,MAppStats</degrees><xref ref-type="aff" rid="aff1">1</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0002-9835-3474</contrib-id></contrib><contrib id="contrib11" contrib-type="author"><name><surname>Collin</surname><given-names>Philippa</given-names></name><degrees>PhD,B.A. (Hons)</degrees><xref ref-type="aff" rid="aff2">2</xref><xref ref-type="aff" rid="aff6">6</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0003-0015-4213</contrib-id></contrib><contrib id="contrib12" contrib-type="author"><name><surname>Bidargaddi</surname><given-names>Niranjan</given-names></name><degrees>PhD,BEng (Hons)</degrees><xref ref-type="aff" rid="aff1">1</xref><xref ref-type="aff" rid="aff2">2</xref><contrib-id contrib-id-type="orcid">http://orcid.org/0000-0003-2868-9260</contrib-id></contrib></contrib-group><aff id="aff1"><sup>1</sup><institution>Flinders Human Behaviour & Health Research Unit</institution><institution>Department of Psychiatry</institution><institution>Flinders University</institution><addr-line>Bedford Park</addr-line><country>Australia</country></aff><aff id="aff2"><sup>2</sup><institution>Young and Well Cooperative Research Centre</institution><addr-line>Abbotsford, Victoria</addr-line><country>Australia</country></aff><aff id="aff3"><sup>3</sup><institution>Mental Health Informatics Research Unit</institution><institution>Country Health SA LHN Inc</institution><addr-line>Adelaide</addr-line><country>Australia</country></aff><aff id="aff4"><sup>4</sup><institution>School of Medicine</institution><institution>University of Adelaide</institution><addr-line>Adelaide</addr-line><country>Australia</country></aff><aff id="aff5"><sup>5</sup><institution>Gus Fraenkel Medical Library</institution><institution>Flinders University</institution><addr-line>Bedford Park</addr-line><country>Australia</country></aff><aff id="aff6"><sup>6</sup><institution>Institute for Culture and Society</institution><institution>University of Western Sydney</institution><addr-line>Penrith</addr-line><country>Australia</country></aff><author-notes><corresp>Corresponding Author: Simone Kate Orlowski <email>simone.orlowski@flinders.edu.au</email></corresp></author-notes><pub-date pub-type="collection"><season>Jul-Dec</season><year>2015</year></pub-date><pub-date pub-type="epub"><day>09</day><month>7</month><year>2015</year></pub-date><volume>2</volume><issue>2</issue><elocation-id>e12</elocation-id><history><date date-type="received"><day>20</day><month>2</month><year>2015</year></date><date date-type="rev-request"><day>29</day><month>4</month><year>2015</year></date><date date-type="rev-recd"><day>25</day><month>5</month><year>2015</year></date><date date-type="accepted"><day>27</day><month>5</month><year>2015</year></date></history><permissions><copyright-statement>©Simone Kate Orlowski, Sharon Lawn, Anthony Venning, Megan Winsall, Gabrielle M Jones, Kaisha Wyld, Raechel A Damarell, Gaston Antezana, Geoffrey Schrader, David Smith, Philippa Collin, Niranjan Bidargaddi. Originally published in JMIR Human Factors (http://humanfactors.jmir.org), 09.07.2015. </copyright-statement><copyright-year>2015</copyright-year><license license-type="open-access" xlink:href="http://creativecommons.org/licenses/by/2.0/"><license-p><pmc-comment>CREATIVE COMMONS</pmc-comment>This is an open-access article distributed under the terms of the Creative Commons Attribution License (<ext-link ext-link-type="uri" xlink:href="http://creativecommons.org/licenses/by/2.0/">http://creativecommons.org/licenses/by/2.0/</ext-link>), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Human Factors, is properly cited. The complete bibliographic information, a link to the original publication on <ext-link ext-link-type="uri" xlink:href="http://humanfactors.jmir.org,">http://humanfactors.jmir.org,</ext-link> as well as this copyright and license information must be included.</license-p></license></permissions><self-uri xlink:type="simple" xlink:href="http://humanfactors.jmir.org/2015/2/e12/"></self-uri><abstract><sec sec-type="Background"><title>Background</title><p>Despite the potential of technology-based mental health interventions for young people, limited uptake and/or adherence is a significant challenge. It is thought that involving young people in the development and delivery of services designed for them leads to better engagement. Further research is required to understand the role of participatory approaches in design of technology-based mental health and well-being interventions for youth.</p></sec><sec sec-type="Objective"><title>Objective</title><p>To investigate consumer involvement processes and associated outcomes from studies using participatory methods in development of technology-based mental health and well-being interventions for youth.</p></sec><sec sec-type="Methods"><title>Methods</title><p>Fifteen electronic databases, using both resource-specific subject headings and text words, were searched describing 2 broad concepts-participatory research and mental health/illness. Grey literature was accessed via Google Advanced search, and relevant conference Web sites and reference lists were also searched. A first screening of titles/abstracts eliminated irrelevant citations and documents. The remaining citations were screened by a second reviewer. Full text articles were double screened. All projects employing participatory research processes in development and/or design of (ICT/digital) technology-based youth mental health and well-being interventions were included. No date restrictions were applied; English language only. Data on consumer involvement, research and design process, and outcomes were extracted via framework analysis.</p></sec><sec sec-type="Results"><title>Results</title><p>A total of 6210 studies were reviewed, 38 full articles retrieved, and 17 included in this study. It was found that consumer participation was predominantly consultative and consumerist in nature and involved design specification and intervention development, and usability/pilot testing. Sustainable participation was difficult to achieve. Projects reported clear dichotomies around designer/researcher and consumer assumptions of effective and acceptable interventions. It was not possible to determine the impact of participatory research on intervention effectiveness due to lack of outcome data. Planning for or having pre-existing implementation sites assisted implementation. The review also revealed a lack of theory-based design and process evaluation.</p></sec><sec sec-type="Conclusions"><title>Conclusions</title><p>Consumer consultations helped shape intervention design. However, with little evidence of outcomes and a lack of implementation following piloting, the value of participatory research remains unclear.</p></sec></abstract><kwd-group><kwd>mental health</kwd><kwd>young people</kwd><kwd>technology</kwd><kwd>intervention</kwd><kwd>participatory</kwd><kwd>design</kwd></kwd-group></article-meta></front></pmc></record>Pour manipuler ce document sous Unix (Dilib)
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