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Developing a Media Strategy to Minimize Loss to Follow-Up in the Pediatric HIV/AIDS Cohort Study (PHACS) Using Photovoice
- 1. Developing a Media Strategy to Minimize Loss to Follow-Up in the Pediatric HIV/AIDS Cohort Study (PHACS) Using Photovoice Daryl A. Mangosing, MPH Candidate ’15 8/12/2015 | PH-302 ALE Implementation
- 2. 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
- 3. Study and organizational context Harvard T.H. Chan School of Public Health (HS • Long-term effects of HIV infection and ART among children and young adults • PHACS Data and Operations Center (DOC): Research expertise and website maintenance
- 4. 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
- 5. Approach: Participatory media Participatory photo elicitation or “Photovoice”3 Elaboration Likelihood Model framework4-5
- 6. 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
- 7. Results: Descriptive statistics 2 4 Figure 1: Participatory Group Characteristics Young Adult CAB Adult CAB N=6
- 8. Results: Descriptive statistics 4 8 9 9 Shot by participant, 18 Figure 2: Photovoice Media Characteristics Retrieved from the Internet Photos of printed photos N=30
- 11. Implications: Media strategy Participatory media Digital story maps Social media network Content and topics
- 12. 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
- 14. 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 communicat
- 15. Acknowledgements Linda Hudson, ScD, MSPH Tufts School of Medicine Claire Berman, MS-HCOM Harvard School of Public Health Susan Koch- Weser, ScM, ScD Tufts School of Medicine• Megan Reznick, Westat • Dominique Wilson, University of Illinois-Springfield
- 16. References 1. 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/
Notas del editor
- www.bu.edu/cghd/our-work/projects/loss-to-follow-up-for-hiv-treatment-in-south-africa/ An area lacking attention is the attrition of child participants in observational studies.1 This presents significant implications for the Pediatric HIV/AIDS Cohort Study (PHACS), a multicenter cohort focusing on children perinatally HIV-infected (PHIV) or HIV-exposed uninfected (HEU).2 Even if antiretroviral therapy (ART) is optimal for those who receive treatment, the cohort continues to face unique challenges related to adulthood. Such barriers like competing demands on their time, relocating geographic locations, study participation fatigue, stigma of HIV, and low health literacy inevitably affects the retention of young adults (age 18+) as well. If participants disengage from PHACS, their ART adherence and healthcare access can be negatively impacted, thereby decreasing their quality-of-life and leading to adverse health outcomes. Important clinical concepts to consider are the health outcomes related to perinatal HIV-infection and ART. “Successful clinical, immunological, and virological outcomes on combination ART are dependent on at least 95% adherence to the regimen.”5 Yet, nonadherence to medication is the most significant challenge to successful management of HIV-infected individuals, especially adolescents, and may be due structural, patient-related, provider-related, medication-related, disease-related, and psychological barriers.5
- The mission of the Harvard T.H. Chan School of Public Health (HSPH) is “to advance the public’s health though learning, discovery, and communication.” With the PHACS Network having been awarded cooperative agreements and funding from 9 NIH institutes and the Office of the Director, HSPH currently serves as the PHACS Data and Operations Center (DOC). The purpose of the DOC is to provide operations, design, methodological, and analytic expertise and support to the development of the PHACS research protocol. The DOC also develops and supports the maintenance of the PHACS websites. Twenty-one clinical sites across 12 states and Puerto Rico participate in the PHACS studies. Of those, 18 participate in SMARTT and 14 participate in AMP, with the majority conducting both protocols. https://phacsstudy.org/About-Us/Participating-Organizations https://upload.wikimedia.org/wikipedia/commons/c/c3/Harvard_School_of_Public_Health,_Boston_MA.jpg
- By using Photovoice and focus group discussion among a preselected group of participants (i.e., the Young Adult and Adult CAB), themes surrounding their identity were elicited through digitally recorded media while their experiences of being affected by HIV was discussed. The project deliverables comprised media strategy recommendations and a video compilation. Recommendations have been proposed on how the Health Education and Communication Committee (HECC) could effectively engage PHACS participants and facilitate engagement among each other through visual media and the Internet while the photos from Photovoice have been compiled into a video exhibit. By responding to the themes and concerns that resonate with CAB members, the HECC could engage their peers more effectively as a result of meaningful changes around their communication practices. If successful, study retention would increase or remain maintained and LTFU ultimately decreases. It is hypothesized then that their quality-of-life and health status will remain stable or improve as a long-term outcome.
- Conduct formative research and literature review on visual media strategies and Photovoice studies that reflect the contexts of this population, setting, and health issue First implemented in China in the early 1990s, Wang and Burris describe Photovoice as “the process by which participants can identify, represent, and enhance their community through a specific photographic technique.” 13 With its primary emphasis on the story and meaning behind the photograph than jus the physical medium itself, three steps generally entail the process: 1) selecting what to photograph and capture it on camera, 2) participating in a “critical reflection” around the story/meaning behind the photographs, and 3) affect policy or social change. 13 The participatory visual method of Photovoice also allows individuals to bring expertise into the clinical setting and educate their clinicians.12 Among people living with HIV/AIDS, Photovoice has been used to create positive social change in accessing care, to understand their caregiving and social support networks, and to critically reflect on experiences with HIV-stigma.14, 15, 16 By allowing participants to photograph their everyday realities, authority on the imagery lies within the originator than with the researcher.14 To address this, the project employed formative research and participatory photo elicitation (Photovoice) to examine themes in self-identity and a focus group discussion (FGD) to facilitate their reflections. Findings informed the design of a web-based media strategy using the elaboration likelihood model (ELM) – a dual-processing model that is used to understand persuasion in situations when recipients of messages are aware of the persuasive intent – to increase study engagement and participation in PHACS to ultimately maintain or improve health outcomes among young adults. For theory, ELM was selected for this project based on the narrative and health marketing literature and employs two routes of processing – central and peripheral – in which central processing occurs when involvement and/or motivation and ability to process are high whereas peripheral processing involves superficial cues and “short cuts” associated with persuasive information.19, 20 ELM is based on the premise that elaboration or processing of messages lead to attitudes that are more persistent over time, more resistant to counterarguments, and more predictive of behavior.20 http://rulirenata.com/photovoice/ http://seedandsprout.com/s11_gd573/wp-content/uploads/2011/04/Patton_2.jpg
- Recruitment and Training Participants were recruited via blanket emails to all CABs and then to specific individuals from the Preceptor to the Young Adult and Adult CAB members with all electronic documents provided via attachment or web URL. For training, a 16-minute Photovoice orientation video was produced and delivered via Prezi (web presentation software) and YouTube to inform participants of rules/guidelines, photography basics, project goals and objectives, and their roles and expectations throughout the project. Photovoice Prior to initiating Photovoice, Young Adult CAB members brainstormed and selected an overarching theme on identity: “I am who I am, not because you define me.” After deciding to extend participation to the Adult CAB due to insufficient recruitment, final participants were given about five weeks to take pictures images (or video and audio narrations if they wished). Participants then submitted their media files via email attachment to the Preceptor. Captions of 1-3 sentences were also submitted for each photo(s). Focus group discussion A PowerPoint and PDF copy of the Photovoice slides with everyone’s photos and captions have been distributed beforehand so that they may follow along during the session. The discussion was conducted via teleconference and was audio recorded via computer with verbal consent. Using a pre-written script, qualitative data that elicited the participants’ reflection of the Photovoice process, their photos, and salient themes was collected. Before starting the FGD, ground rules were established by the group. Analysis Formative research was conducted as a literature review on visual media strategies and Photovoice studies that reflected the contexts of this population, setting, and health issue. The focus group discussion was transcribed from the audio recording, which was destroyed once the transcription was completed. The FGD was reviewed and analyzed for recurring themes and was confirmed by meeting with the Preceptor and reaching consensus. Initially, the “SHOWeD” method18 was adapted as an interviewing structure to discuss the photography work of CAB members by using standard questions as a means of analysis. While this method provided an explicit analysis for emerging themes based on the participants’ dialogue on issues and themes related to the Photovoice media, reviewing the FGD transcript allowed for a more in-depth analysis on more implicit, key meta-themes surrounding self-identity
- Several factors appeared to play a role in influencing how participants recorded, staged, and/or selected their photos and included the following: emotional feelings on a particular day; role as caregiver and mother; portrayal of a personal and problematic social issue; reflection and exploration of one’s life journey; and professional role as an advocate. For the sake of time, the first two items of the “SHOWeD” method18 were only asked: “What do you see happening here?” or describing what the eyes see and “What is actually happening here?” or what is the story behind the picture. Afterwards, we asked the participants collectively brainstorm the final main themes for the video compilation based on everyone’s sharing and discussion of their photos
- Based on the results of this project with a limited sample of CAB members, Photovoice and other similar participatory media may have a positive impact on the target audience of young adults at risk of disengaging or abandoning participation with PHACS. Past research has shown that allowing individuals who are affected by HIV to take photos around a relevant theme and to discuss what those photos mean in a group setting generates richer insights and affirmation of one’s personal experiences life.14-16 The positive feedback gained from the Photovoice process and the video exhibit supports the continued implementation of this participatory methodology on other topics relevant to PHACS participants. The four media strategy recommendations (Appendix G) serve as an impetus for future activities that explore topics that are relevant to the PHACS target audience like lifestyle, life events, relationships, challenges and successes, etc. The use of participatory media (#1) is not only based on Photovoice but also on the evidence of its positive impact on advocacy and empowerment, interpreting experiences, and identity development.21 While PHACS already features a Story Map on the Amp Up website, the Story Map (#2) is restricted to a text-based format and needs to be multimedia-compatible. Social media (#3) is also remains a relevant communication channel for young adults, as evidenced by the use of web-based platforms to share user content.17 Lastly, FGD themes and relevant topics in healthcare transition (#4) were compiled and could be used as starting points for content when implementing a media strategy. Currently, minimal research exists on the impact of digital storytelling in public health given that such methodology is still new and seen as a novel approach.22 Theoretical perspectives for the use of narratives in health promotion have likewise faced uncertainty, as dual-processing models like the ELM have produced mixed results.10 However, despite the ambiguity around the power of visual media and web-based communication/network platforms, other qualitative studies have already revealed the positive impact of participatory media22, including the preliminary findings of this Photovoice project on self-identity. Future projects in PHACS should be preceded by an audience needs assessment to be effective, and more importantly, research in this area of public health and health communication needs to continue overall. http://blog.dmtraining.net/blog/bid/381457/4-Sales-Strategies-for-Getting-a-Scheduled-Next-Step
- Media strategy recommendations have been generated based on the identification of web-based communication platforms that integrate visual multimedia. Recommendations have been divided into the following sections: 1) Participatory Photography and Media, 2) Digital Story Maps, 3) Social Media, and 4) Content and Topics. The ELM served as a theoretical framework to tailor the media strategy recommendations. In order for these strategies to be effective, relevant themes among those affected by HIV were treated as an impetus for tapping into the central processing of messages with high personal relevance and involvement (#4) whereas specific types of communication channels were recommended for peripheral processing (#1-3). To take advantage of peripheral processing factors like superficial cues, source likeability, popularity, and emotional appeal, the communication platform and types of media must be considered, not just the content and topics. Thus, the media strategy recommendations centered around the assumption that majority of the target audience may be distracted or have low motivation to receive these messages and thereby call for peripheral processing, which can then lead to central processing once a personal connection has been made with the message. Based on positive feedback from PHACS stakeholders, Photovoice should be implemented on other relevant themes, keeping in mind of the participants’ constraints. Improve user appeal for the PHACS Story Map on the Amp up website by revamping its current features to include the sharing of photos and video in addition to narrative text. Incorporating social media or “private digital network” as a core component of the HECC’s communication practices should start with considering proprietary web 2.0 platforms. This section consists of communication starting points derived from both Next Step’s guide for transitioning in HIV care from Massachusetts Community AIDS Resource Enhancement and the focus group findings with quotes from Photovoice on theme of self-identity. http://theviewspaper.net/participatory-approach-to-development-communication-alternative-media-leading-the-way/ http://storymaps.arcgis.com/en/app-list/ https://h3lloworldwid3w3b.wordpress.com/ http://www.socialmediatoday.com/content/engaging-your-audience-avoid-random-acts-content
- Serving as the first Photovoice project ever to be conducted directly in PHACS, several limitations naturally arose. While one of the most limiting factors was the lack of time for a more optimal implementation, others limitations included the initial lack of recruitment and participation from the Young Adult CAB, constraints beyond our control like participants’ lack of time/availability, no ownership of a digital recording device, and lengthy/detailed language in communication materials. Moreover, PHACS participants reside in multiple sites across the U.S. due to nature of the study, therefore necessitating a remote, online- and teleconference-based implementation. To the best of our knowledge, no such literature on studies or background information could be found on conducting Photovoice this way, so this project may be the first ever to try employing Photovoice with a target audience that could not physically meet in person. The lack of pretesting any of the project materials for the intended audience further compounded the aforementioned limitations, which called for making adjustments that accommodated the participants as well as the project timeline in order to be able to fulfill the project objectives. Due to the existing organizational infrastructure of HSPH and the lack of any established relationship/rapport between the participants and myself, the project was only able to implement Photovoice and a FGD with a proxy audience – self-selected Young Adult and Adult CAB members – in lieu of all of the PHACS young adult participants in the Amp Up protocol. Furthermore, given the collection of qualitative data from participants recruited from a convenience sample, these findings cannot be readily generalized to PHACS young adults. However, such findings provide valuable insight to more nuanced understandings of self-identity and how the HECC could integrate the themes generated from this project into their communication practices. Deeper inquiries like this can lead to richer learning opportunities. http://www.letsgraph.com/2012/03/you-limitations.html
- Show only 1:00, maybe first :30 and last 30
- http://www.corebrain.org/reality/