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Developing a Media Strategy to Minimize Loss to Follow-Up in the Pediatric HIV/AIDS Cohort Study (PHACS) Using PhotovoiceDaryl A. Mangosing, MPH Candidate ’158/12/2015 | PH-302 ALE Implementation
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Public health problem
• Lack of attention to the attrition of child participants in studies1
• Loss to follow up (LTFU) due to barriers (lack of time, relocation, study fatigue, stigma, health literacy, etc.) as a young adult
• Disengagement and LTFU with PHACS• Challenge of antiretroviral therapy (ART)
nonadherence2
• Decrease in quality-of-life and adverse health outcomes
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Study and organizational context
Harvard T.H. Chan School of Public Health (HSPH)
• Long-term effects of HIV infection and ART among children and young adults
• PHACS Data and Operations Center (DOC): Research expertise and website maintenance
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1
• Identify salient themes in “identity” among Community Advisory Board (CAB) members
2• Design a web-based media strategy
using a theoretical framework
3
• Pilot Photovoice compilation video and write up the recommendations for the media strategy
Project objectives
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Approach: Participatory media
Participatory photo elicitation or “Photovoice”3
Elaboration Likelihood Model framework4-5
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Methods
Recruitment and training: Targeted emails and Prezi
Photovoice: Theme, photo-taking, and submissions w/ captions
Focus group discussion: Teleconference critical dialogue
Analysis & deliverables: Formative research and FGD findings
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Results: Descriptive statistics
2
4
Figure 1:Participatory Group Characteristics
Young Adult CAB
N=6
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Results: Descriptive statistics
Figure 1:Participatory Group Characteristics
4
8
9
9
Figure 2: Photovoice Media Characteristics
Retrieved from the Internet
N=30
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Results: Focus group discussion
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Discussion and implications
Participatory media may have a positive impact on PHACS participants, as shown by other past Photovoice studies.6-8
• Little research on impact of participatory media, but some show positive effect5,9• Future: Needs assessment, evaluation, and research
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Implications: Media strategy
Participatory mediaDigital story maps Social media network
Content and topics
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Limitations
• Use of a relatively novel qualitative methodology• Limited, self-selected sample • Participation bias
• Remote implementation (not in person)• May lack the richness of responses
and data
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Photovoice video compilation clip
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Lessons learned
• Be comfortable with uncertainty• Have a “plan B,” and be flexible • Initial lack of recruitment from Young
Adult CAB• Participant constraints (e.g., limited
availability)• Revision of lengthy, complex language
in materials
Cooperative collaboration and communication!
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Acknowledgements
Linda Hudson,
ScD, MSPHTufts School of
Medicine
Claire Berman,MS-HCOM
Harvard School of Public Health
Susan Koch-Weser,
ScM, ScDTufts School of
Medicine
• Megan Reznick, Westat• Dominique Wilson, University of Illinois-
Springfield
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References1. Williams, P. L., Van Dyke, R., Eagle, M., Smith, D., Vincent,
C., Ciupak, G., Oleske, J., & Seage, G. R., 3rd. (2008). Association of site-specific and participant-specific factors with retention of children in a long-term pediatric HIV cohort study. American Journal of Epidemiology, 167(11), 1375-1386. doi: 10.1093/aje/kwn072
2. Agwu, A. L., & Fairlie, L. (2013). Antiretroviral treatment, management challenges and outcomes in perinatally HIV-infected adolescents. Journal of the International AIDS Society, 16, 18579. doi: 10.7448/ias.16.1.18579
3. Wang, C. C. & Burris, M. A. (1997). Photovoice: Concept, methodology, and use for participatory needs assessment. Health Education & Behavior, 24(369), 369-387. doi: 10.1177/109019819702400309
4. Della, L. J., Eroglu, D., Bernhardt, J. M., Edgerton, E., & Nall, J. (2008). Looking to the future of new media in health marketing: Deriving propositions based on traditional theories. Health Marketing Quarterly, 25(1-2), 147-174. doi: 10.1080/07359680802126210
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6. Schrader, S. M., Deering, E. N., Zahl, D. A., & Wallace, M. (2011). Visually storying living with HIV: Bridging stressors and supports in accessing care. Health Education Research, 26(4), 638-652. doi: 10.1093/her/cyr023
7. Mignone, J., Migliardi, P., Harvey, C., Davis, J., Madariaga-Vignudo, L., & Pindera, C. (2014). HIV as chronic illness: Caregiving and social networks in a vulnerable population. Journal of the Association of Nurses in AIDS Care. doi: 10.1016/j.jana.2014.09.002
8. Brown, B., & Davtyan, M. (Producer). (2014). Implications of HIV-Stigma on Health: From Local to Global. [PowerPoint slides] Retrieved from http://thelatrust.org/wp-content/uploads/2013/02/SoCalSummit_HIV-Stigma_Final.pdf
9. Schwartz, E. (2015). Harnessing the Power of Digital Storytelling Webinar Recap. from http://healthcommcapacity.org/harnessing-the-power-of-digital-storytelling/