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

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

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

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

Approach: Participatory media

Participatory photo elicitation or “Photovoice”3

Elaboration Likelihood Model framework4-5

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

Results: Descriptive statistics

2

4

Figure 1:Participatory Group Characteristics

Young Adult CAB

N=6

Results: Descriptive statistics

Figure 1:Participatory Group Characteristics

4

8

9

9

Figure 2: Photovoice Media Characteristics

Retrieved from the Internet

N=30

Results: Focus group discussion

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

Implications: Media strategy

Participatory mediaDigital story maps Social media network

Content and topics

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

Photovoice video compilation clip

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!

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

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

5. Hinyard, L. J., & Kreuter, M. W. (2007). Using narrative communication as a tool for health behavior change: A

conceptual, theoretical, and empirical overview. Health Education & Behavior, 34(5), 777-792. doi: 10.1177/1090198106291963

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/