Abstract
Background
Digital storytelling (DST) encourages participants to use technology to create narratives and share personal experiences. Although DST can amplify the voices of groups experiencing marginalization, it is unclear how DST has been used among young adults of color. We also lack a comprehensive understanding of DST’s role in addressing health-related outcomes. We conducted a systematic review to examine the role of DST in influencing health-related knowledge, attitudes, and behaviors among young adults of color.
Methods
We searched three databases for peer-reviewed literature between January 1, 2000, through December 31, 2023, for references examining DST methods among young adults (aged 18–39 years) of color that included at least one health-related outcome. We used a two-stage review process to assess eligibility. Data were analyzed by DST type and health outcome.
Results
From 877 references, we identified 33 eligible articles, most of which were from Canada and the USA. Studies addressed infectious diseases (n=13), including human immunodeficiency virus (HIV); mental health issues (n=10); maternal and reproductive health (n=5); and behavioral or other health themes (n=5). Across health areas, studies were divided by DST type: media creation (e.g., participants created digital stories) or media consumption (e.g., participants or other community members were exposed to stories). Studies using media creation often use qualitative methods to identify social determinants of health or reveal complex health-related issues. Studies using media consumption often used quantitative methods to measure knowledge, attitudes, and behaviors. Across health topics, DST demonstrated some effect in changing health knowledge and attitudes, but mixed results in terms of shifting health behaviors.
Conclusions
DST can amplify the voices of young adults of color, especially regarding complex issues, such as managing HIV or mental health issues. Media creation studies explored lived experiences, while media consumption studies showed that DST was effective at improving knowledge and attitudes related to certain health issues. More randomized controlled trials may be necessary to better assess the effect of DST interventions on modifying health behaviors. Researchers should also consider the value of DST beyond health outcomes intended to be measured, including the ability to empower young adults of color to be more fully engaged throughout the research process.
Keywords: Systematic review, digital storytelling (DST), young adults of color, health outcomes
Highlight box.
Key findings
• Digital storytelling (DST) methods have been used to assess outcomes related to infectious disease, mental health, maternal and reproductive health, and other behavioral topics for young adults of color.
• Across health topics, DST methods are distinguished into two general types: media creation and media consumption.
• DST was effective in exploring complex social determinants of health and improving knowledge and attitudes, but there were mixed results in terms of influencing health behaviors.
What is known and what is new?
• DST can be an effective tool in amplifying the lived experiences of groups experiencing marginalization, but it is unclear how DST has been used specifically for young adults of color (aged 18–39 years).
• This systematic review provides a comprehensive overview of the role of DST in promoting health-related outcomes for young adults of color.
What is the implication, and what should change now?
• DST can provide a deeper understanding of complex social determinants of health and improve health-related knowledge and attitudes.
• More robust methods and longer follow-up periods are needed to assess the effect of DST on modifying health behaviors.
• Additional benefits of DST beyond influencing health-related outcomes may include empowering individuals and building confidence in health research.
Introduction
Storytelling—an arts-based intervention emerging from research using community-based participatory research (CBPR) approaches—allows participants to share experiences in narrative format and reflect on their own or others’ knowledge, beliefs, and attitudes (1). Digital storytelling (DST) relies on the same principles but uses technology to incorporate audiovisual components and, in some cases, reach audiences online (2). Not strictly defined, DST interventions can encompass many methodologies using digital media. For example, PhotoVoice is a type of DST in which participants use photos to respond to a series of prompts to create their own stories (3). When implemented to its fullest capacity, DST is an iterative process that solicits feedback, facilitates collaboration, and promotes idea-generation across fields or thematic areas (4). Moreover, when participants create digital stories, it builds technological competency, encourages social learning, and provides a space for self-expression (4,5).
Increasingly, DST has been adopted in health research as an intervention to promote behavior change (6,7). Evidence suggests that DST can be effective with groups being marginalized across contexts because materials can be tailored to specific communities, so individuals identify more closely with characters and storylines (6-10). For example, the Girl Talk initiative in Zimbabwe used short, animated videos about a school-aged girl to increase knowledge around puberty and menstruation (11). The specificity of the intervention meant that the narratives were relevant for young girls, available in their local language, and created with input from community members. Evidence indicates that shaping stories to participants contributes to the acceptability and effectiveness of the intervention (12-14). Likewise in the USA, the digital intervention “Tough Talks for Novel Coronavirus (COVID-19)” showed that DST can be an acceptable tool in decreasing the systemic health inequities experienced by young Black adults (7), utilizing digital stories developed by participants in a series of workshops around uptake of the coronavirus disease 2019 (COVID-19) vaccine in southern Black communities (7). Many participants found value in learning to tell their stories in a digital format and reported feeling empowered after sharing their videos with peers (7). These results are important as it was the first study to examine DST in a digital health intervention focusing exclusively on young Black adults, a population that has been historically marginalized in the USA. Despite these examples, it is yet unclear the extent to which DST has been used to influence health outcomes—and to what end—among groups experiencing marginalization which we recognized is occurring on the basis of many factors such as structural racism, intersectional stigma due to health conditions, sexism, ageism, and many other interlocking systems which young people are navigating in the context of their health (15,16).
An additional challenge is that there is limited literature discussing “the ethical and methodological challenges in digital storytelling” and how these may manifest when used outside of well-researched areas (15). A narrative review noted that DST lacks core components, making it challenging to define who makes the stories, the role of participants, and the type of media that can be used within the DST umbrella (16). The inconsistent definition creates ambiguity when implementing and assessing DST in different communities, particularly among marginalized groups of color (16). Given these gaps and challenges, we conducted a systematic review to examine the role of DST in influencing health-related outcomes, including knowledge, attitudes, and behaviors, specifically among young adults of color over the past 20 years. By evaluating DST methodologies, we can better identify settings in which they may be a powerful tool for changing attitudes, knowledge, and behaviors. Through this review, our goal was to inform future interventions relying on DST to generate behavior change among young adults of color, in particular, but with key findings that could be extended to other populations experiencing inequities and marginalization. While the term youth of color is typically used in the USA, we use this term heretofore as inclusive of youth who may identify as Black or people of color in other settings as well, irrespective of nationality. We present this article in accordance with the PRISMA reporting checklist (17) (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-65/rc).
Methods
A protocol for this review was prospectively registered in the International Prospective Register of Systematic Reviews (PROSPERO; CRD42023495687).
Search strategy & search terms
With the support of a reference librarian, we conducted a search in three databases encompassing social and behavioral research on health and digital interventions: PubMed, Scopus, and EBSCO. Each database was searched between January 1, 2000, and December 31, 2023. Each database was searched using Boolean operators combining three constructs: (digital storytelling) AND (health behaviors) AND (young adults of color). A comprehensive search strategy is available in Table S1. Iterative secondary reference searching was conducted on studies included in the review until no new studies were identified.
Eligibility criteria
All references included in this review met the eligibility criteria outlined in Table 1. Briefly, we searched for peer-reviewed literature examining how DST has been used to influence health attitudes, knowledge, and behavior among young adults (aged 18–39 years) of color across the globe since 2000. The lack of a commonly held definition for what qualifies as a DST methodology can make it challenging to apply and evaluate DST in different communities (16). As such, this review defines DST as a form of storytelling that utilizes digital components, including text, pictures, recorded audio narrations, music, and/or videos (18). DST bears similarity to PhotoVoice, which is defined as a visual research method that puts cameras into participants’ hands and enables them to document, reflect upon, and communicate issues of concern, while stimulating social change (19,20). Thus, we define PhotoVoice as a type of DST and include it in our review accordingly.
Table 1. Eligibility criteria.
| Criteria | Inclusion | Exclusion |
|---|---|---|
| Reference type | Peer-reviewed articles, including dissertations, white papers, reports, work undergoing peer-review | Conference abstracts, review articles, editorials, commentaries, opinion pieces, and other articles that do not include primary data. References for which a full text is ineligible will be excluded |
| Time period | January 1, 2000 through December 31, 2023 | Pre-2000; post-2023 |
| Geography | Global | No exclusions based on location |
| Population | Young adults (approximately aged 18–39 years) AND populations of color (non-White) | Adult populations; or research with young adults/adults for which findings cannot be appropriately disaggregated AND White populations; or research with non-White/White populations for which findings cannot be appropriately disaggregated |
| Intervention | Research that includes participants involved in the creation of or exposed to the following interventions: digital stories, digital content creation, and video/photovoice, virtual storytelling, content creation, online storyboarding | Research that includes interventions that are not at least partially digitized (OR only include online components for health service delivery) |
| Health-related outcomes | Knowledge, attitudes, or behaviors related to human physical or mental health, including (as examples) sexual and reproductive health, family planning, HIV, disease prevention, vaccination | Research examining non-health related outcomes (e.g., public speaking, curriculum development, food waste reduction) |
| Study design | Qualitative studies, including in-depth interviews or focus group discussions; OR experimental or non-experimental studies quantitatively evaluating the intervention, including surveys and secondary data analyses | Systematic reviews and meta-analyses |
| Languages | Articles in English | Articles published in languages other than English |
HIV, human immunodeficiency virus.
Screening citations
References identified through the three databases were compiled into a single EndNote file, which was used to create a unified, de-duplicated list. We uploaded the de-duplicated list into Covidence (21), a systematic review software allowing for simultaneous review by multiple team members. Citation screening involved a two-stage process conducted by two reviewers at each stage. In the first stage, titles and abstracts were screened to assess for general eligibility; in the second stage, full texts were reviewed to ensure all criteria were met. In the second stage, all references were excluded based on at least one criterion from Table 1. Because some articles were not clear in defining their target population, we discussed any ambiguous criteria to evaluate their eligibility as a team, rather than filtering them out using search terms. Therefore, in both stages, disagreements were addressed through team consensus.
Data extraction, management, and analysis
References meeting all eligibility criteria were included. Data extraction involved one reviewer entering information into an Excel-based template, which was cross-checked by a second reviewer for accuracy. The template included the following fields: (I) study identification—author(s), type of citation, year of publication; (II) study description—study objectives; location; population characteristics; study design; description of the intervention; description of DST; and (III) outcomes data—outcome measures for quantitative and qualitative data, conclusions, and limitations.
Using the extraction sheet, we sorted studies by health topic and DST type. For health topics, analysts reviewed the main outcomes of each study and applied tags that described the overarching thematic area [e.g., vaccination for human papillomavirus (HPV)]. After this initial round, themes were aggregated into major areas of focus until four main themes were identified: infectious disease, mental health, maternal and reproductive health, and behavioral/other health topics. The last theme captures all health-related references that did not fall into the three preceding thematic areas. Studies could have a primary and secondary theme. Results from studies on infectious disease and mental health were further organized into sub-themes due to their diverse range of topics.
For DST type, we identified studies as either including participants in the creation of DST (media creation) or exposing participants to DST (media consumption). For the latter, researchers showed participants media created from a DST process and elicited participants’ responses. PhotoVoice studies were assessed separately as a category of interest. For each health topic and DST type, we created a memo summarizing the information across studies, taking note of key similarities or differences between studies. We pursued a narrative synthesis of findings that is consistent with a systematic review methodology. Results were first summarized by health topics. For each health topic, we organized the findings by DST type: i.e., media creation, PhotoVoice, and then media consumption. After this first analysis, we then conducted an outcome sorting exercise to summarize the types of outcomes examined (knowledge, attitude, or behaviors) by different DST types. Emanating from research on knowledge and attitudes, we identified a fourth outcome, discussion of social determinants of health, which was prominent in qualitative literature.
Assessment of methodological strengths and weaknesses
We assessed the methodological quality of articles using the Joanna Briggs Institute Critical Appraisal Tools, a suite of checklists available by study design (22). After selecting the appropriate checklist based on each study’s design, study team members appraised each article and summarized the results of this assessment in narrative and tabular format.
Results
Description of studies
We identified 877 unique references through database searches, with 33 references meeting all eligibility criteria (Figure 1). References were most often excluded because they did not focus on young adults or populations of color. Table 2 summarizes key characteristics. North America represented the highest number of references (n=19), with studies from Africa (n=9) representing the second most common source of studies. Infectious diseases were the most discussed health topic (n=14), followed by mental health (n=10), and maternal and reproductive health (n=8). Twelve studies discussed media creation, including an additional four studies utilizing the PhotoVoice technique. Seventeen studies assessed the influence of media consumption on participants’ knowledge, attitude, and behavior related to specific health outcomes.
Figure 1.
PRISMA diagram. DST, digital storytelling.
Table 2. Key characteristics of included studies.
| Key study characteristics | Number of articles |
|---|---|
| Health outcomes† | |
| Infectious diseases | 14 |
| Mental health | 10 |
| Maternal & reproductive health | 8 |
| Behavioral & other topics | 5 |
| DST categories | |
| DST creation | 12 |
| PhotoVoice | 4 |
| DST consumption | 17 |
| Region | |
| North America | 19 |
| Sub-Saharan Africa | 8 |
| East Asia and Pacific | 2 |
| Latin America & the Caribbean | 2 |
| Middle East and North Africa | 1 |
| South Asia | 1 |
| Study method† | |
| Qualitative | 17 |
| Quantitative (RCT) | 10 |
| Quantitative (cross-sectional) | 7 |
†Categories are not mutually exclusive, and the total number of articles does not add to 33. DST, digital storytelling; RCT, randomized control trial.
Quality assessment
We assessed all references for quality using Joanna Briggs Institute (JBI) checklists matching each study’s design, including qualitative studies (n=17), randomized controlled trials (RCTs) (n=10), cross-sectional studies (n=7), with one mixed-methods study assessed by two checklists. Table S2 provides more details from this assessment. Briefly, there was a medium-to-high degree of quality among qualitative studies (average score: 8/10) and RCTs (average score: 9/13); however, quality was sub-optimal among cross-sectional studies (average score: 3/8). Among qualitative studies, most demonstrated congruity between the philosophical perspective, research methodology, objectives, data collection methods, and the interpretation of data. However, few studies had statements locating the researcher culturally or theoretically, or addressed the influence of the researcher on the research, and vice-versa. Among RCTs, most treated groups identically, other than the intervention of interest, measured outcomes in the same way for treatment groups, and used appropriate trial design and statistical analyses. However, most RCTs did not blind participants or the outcome assessors to treatment assignment. Among cross-sectional studies, although most were clear about the criteria for inclusion, studies often lacked a valid and reliable standard to measure the exposure/outcome and objective criteria to measure the condition.
Evidence by health outcomes
A comprehensive overview of the included studies is available in Table 3. The heat map in Figure 2 provides an overview of the health topics discussed by DST type, with darker blue color representing an increased number of studies on that health topic and DST type. Each number is aligned with the reference number in Table 3. For each health outcome below, evidence from studies that involved participants in the DST creating process was reported first, followed by studies that exposed participants to DST (which may include different modalities depending on the study, such as PhotoVoice, video creation).
Table 3. Article extraction.
| ID | Author (years), study design DST category | Region, country | Health sub-theme | Population & sample size | Intervention description | Main findings |
|---|---|---|---|---|---|---|
| 1 | Maragh-Bass (2022) (7), qualitative, digital media creation | North America, USA | Infectious disease | • 18–29 years of age | • Workshop 1&2—background on DST, production skills | • Fear of getting COVID was a strong motivating factor for vaccine uptake, as supported by personal stories in their DST |
| • Identified as Black or African American | • Workshop 3—screening and feedback on participants’ videos around COVID-19 vaccination | • Open discussion of COVID-19 with family and friends is identified as a challenge | ||||
| • English proficient | • Misinformation is a barrier to uptake; participants noted hesitancy due to distrust of the medical establishment | |||||
| • Access to a smartphone | ||||||
| • Resident of Georgia, Alabama, or North Carolina | ||||||
| • Reported willingness or previous completion of a COVID-19 vaccine series in previous online survey | ||||||
| n=11 | ||||||
| 2 | Casapulla (2022) (23), cross-sectional, digital media consumption | Latin America and the Caribbean, Ecuador | Infectious disease, HIV† | • Adults 18 years and older living in or near Cariamanga, Ecuador | • A didactic presentation addressing key points of the transmission and prevention of HIV | • The intervention group had significantly higher HIV knowledge scores and significantly lower stigma scores than the comparison group (P<0.0001) |
| n=133 adults | • Two video narratives from women living with HIV | |||||
| • Structured discussion about the life stories of the women in videos | ||||||
| 3 | Flicker (2020) (24), qualitative, digital media creation | North America, Canada | Infectious disease, HIV† | • Youth were chosen from “Taking Action!”, a national community-based participatory action research project for Indigenous youth leadership in HIV prevention | • Participants completed a digital story that reflected on their experiences of HIV and activism | • The digital stories and community effort to plan movie nights created opportunities to address stigma, myths, and misconceptions around HIV |
| • All participants identify as indigenous | • The digital stories were shown in community movie nights | • In one community, the local health clinic contributed door prizes, made a presentation, and screened the digital story at other events | ||||
| n=18 | • Interviews were conducted with the youth that created the stories, audience members, and researchers that observed | • Community members spoke positively about the opportunity to destigmatize HIV thanks to the digital story | ||||
| 4 | Flicker (2019) (25), qualitative, digital media creation | North America, Canada | Infectious disease, HIV† | • Ages 16–25 years | • Week-long intensive retreat where participants went through the process of creating their digital stories | • Family and elders play a key role in keeping young people and their communities well |
| • Have taken a leadership role in HIV prevention in their communities | • Final screening of participant products | • Connections between mind, body, and spirit are related to sexuality and traditional teachings | ||||
| • Indigenous | • Individual interviews asking about participants’ processes and meanings behind their stories | • Academic and cultural education are important for sexual/reproductive health and personal resilience | ||||
| n=18 | • Additional community screenings and post-screening interviews in the year following the initial intervention | • Physical health and spiritual well-being are linked, especially by engaging with traditional knowledge and ceremony | ||||
| • Group sharing of final photos and narratives | • Substance abuse has a direct and indirect role in youth acquiring HIV | |||||
| 5 | Hill (2022) (26), RCT, digital media consumption | North America, USA | Infectious disease, HIV† | • Cisgender, heterosexual Black women | • Completion of pre-test assessing knowledge on HIV/STI transmission routes | • Mixed results in terms of ability to improve knowledge |
| • Ages 18–45 years | • View vlog (either storytelling vlog with case scenarios or interactive gaming vlog with incorrect information followed by correct info) | • HIV/STI knowledge improved in one area for the gaming group and two areas for the storytelling group | ||||
| • Reported sexual activity in the prior three months | • Completion of post-test | • There was a decrease in knowledge among 11 true/false statements in both study arms | ||||
| • Presented to the ED with a non-emergent condition | • Both interventions had a comparable effect on decreasing HIV/STI knowledge of participants | |||||
| n=26; intervention (n=14), control (n=12) | ||||||
| 6 | Jones (2021) (27), cross-sectional, digital media consumption | North America, USA | Infectious disease, HIV† | • Female Hispanic students [18–29] enrolled at a South Florida university | • Participants watched a 12-episode soap opera video series that portrayed young Black women navigating high-risk relationship scenarios | • 83.2% answered “all” or “most of the time” to “Do you think after watching the videos women will be more likely to get HIV tested?” |
| n=101 | • Participants completed an online evaluation of video series | • 80.2% answered “definitely” or “probably” more likely that a woman would be more likely to ask her partner to use a condom after watching the videos | ||||
| 7 | Ofoegbu (2020) (28), RCT, digital media consumption | Sub-Saharan Africa, Nigeria | Infectious disease, HIV† | • Access to social media platforms | • Participants attended 16 sessions where they watched digital stories on lived experiences with HIV, reflected on key messages, and participated in group discussions | • Research team observed a significant increase in HIV risk perception and HIV knowledge among adolescents in the treatment group compared with those in the no-treatment control group |
| • Availability to attend all study sessions | • REBTs were employed by researchers to explore the participants perceived risk of HIV | • The follow-up assessment showed that adolescents who had participated in the intervention retained an increased HIV risk perception and HIV knowledge compared with adolescents in the no-treatment control group | ||||
| • Willingness to sign informed consent | ||||||
| n=98; intervention (n=49), control (n=49) | ||||||
| 8 | Treffry-Goatley (2018) (29), cross-sectional and qualitative, digital media consumption | Sub-Saharan Africa, South Africa | Infectious disease, HIV† | • From the rural uMkhanyakude district of the KwaZulu-Natal province of South Africa | • First, 20 people attended a 5-day DST workshop, during which they created their own digital story. These stories were collated into a DVD, which was shown to community members at healthcare facilities and other community settings | Quantitative: A greater proportion of respondents in the post screening survey reported that ART gives one “hope to live again” (50% vs. 72%) whereas a similar proportion felt that ART helps one to regain health (53% vs. 51%) |
| • First survey round, age ranged from 13 to 90 years with a mean age of 34.5 years | • The study evaluated the use of the digital stories for community engagement through a mixed methods approach: quantitative surveys of community members’ knowledge and understanding of HIV and ART (pre-post the intervention), FGDS with people who viewed the DVD and observation of practice during the DVD screenings | Qualitative: • Twenty-six people commented that the film could encourage disclosure within the context of friendships, romantic relationships or families • Eighteen participants spoke about the potential impact that the film may have on adherence knowledge and behavior • Thirty-one participants discussed how the stories might raise awareness of the importance of going to the clinic when one is ill and of testing for HIV and other illnesses • 18 individuals spoke about how exposure to the film would discourage stigma and boost social support |
||||
| • In this second round of survey age ranged from 13 to 80 years with a mean age of 33 years | ||||||
| n=852 (pre-screening survey) | ||||||
| n=860 (post-screening survey) | ||||||
| 9 | Treffry-Goatley (2016) (30), qualitative, digital media creation | Sub-Saharan Africa, South Africa | Infectious disease, HIV† | • Black South African citizens/residents from uMkhanyakude district, a rural area in KwaZulu-Natal, South Africa | Workshop on DST was conducted and short films were produced. Workshop structure: | • Fourteen of the stories about HIV speak about starting antiretroviral therapy, including the fear of possible side effects and experiences of medical plurality |
| • Age ranges from 25 to 53 years, with a mean age of 30 years | • Day 1: introduction, story circle and photo tutorial | • HIV testing was a clear subtheme theme, with thirteen stories explicitly mentioning going for an HIV test | ||||
| • Motivation for attendance and to share a story | • Day 2: art tutorial, take photos and record stories | • The stories suggest that stigma, disclosure and social support are closely interwoven since a fear of stigma can have a major impact on a person’s ability to disclose and to receive the support that is key to successful adherence | ||||
| n=20 | • Break: facilitators created a draft of stories while participants produced further photos/drawings at home | |||||
| • Day 4: produce music and generate second draft | ||||||
| • Day 5: premiere of the films, discussion, provide final consent | ||||||
| 10 | Willis (2014) (31), qualitative, digital media creation | Sub-Saharan Africa, Zimbabwe | Mental health, infectious disease†, HIV† | • Ages 18–22 years | • Twelve adolescents attending Africaid support groups were purposively selected to attend a ten-day DST workshop during which they created their own digital stories | • Storytellers explained how they now have a sense of control and freedom in their lives and how the digital stories have helped them to cope better |
| • Enrolled in Africaid’s Zvandiri programme in Harare | • Six created stories about their lives and six created stories related to specific themes | • One of the most notable themes was the sense of increased confidence in the storytellers. This was evident in the written narrative of the film, the tone of their voice in the audio narrative and in their use of images to convey their messages | ||||
| • Interest in storytelling processes and media techniques | • Two focus group discussions were held with storytellers on completion of their films and one focus group discussion was held with caregivers. | • Key themes emerged regarding the impact of emotional support, acceptance, peer support and participation in their life stories | ||||
| • Knowledge of their HIV status | • Detailed field notes including verbatim quotes were written during the focus group discussions | • The storytellers described their desire to live. In contrast to the earlier feelings of hopelessness, suicidal ideation and having no purpose, they then went on to describe a new desire to live | ||||
| • Able to read and write and free to attend for the duration of the workshop | ||||||
| n=12 | ||||||
| 11 | Kim (2020) (32), RCT, digital media consumption | North America, USA | Infectious disease, maternal/reproductive health† | • Current undergraduate or graduate female student | • Intervention group watched a 17-minute video story of Korean American college women’s HPV vaccination experiences and attitudes towards getting the HPV vaccine | • At the two-month follow-up, ten participants (22.2%) reported having received at least one dose of the HPV vaccine or having already scheduled the vaccination |
| • Resident of Northeast USA | • Comparison group received 7 pages of written information about HPV and the vaccine from the American Cancer Society and Centers for Disease Control and Prevention | • The experimental group was twice as likely to report receiving HPV vaccination, or scheduling an appointment for the HPV vaccine than the comparison group (15.5% vs. 7.1%) | ||||
| • Identified as Korean or Korean American | • After the intervention, the experimental group showed 144 percent increase in intention to receive HPV vaccine while the comparison group increased by 67 percent | |||||
| • 18–26 years old | ||||||
| • Can read or speak English | ||||||
| • Not vaccinated for HPV | ||||||
| n=104; intervention (n=54), control (n=50) | ||||||
| 12 | Thompson (2019) (33), RCT, digital media consumption | North America, USA | Infectious disease, maternal/reproductive health† | • Ages 21–64 (mean: 40.7 years; SE: 0.8) | • Three types of small media educational interventions: fotonovela, radionovela, digital story | • Compared to women in the control group, knowledge among women in the fotonovela, radionovela, and digital story arms was higher |
| • Not pregnant | • For the fotonovela, participants viewed and read an HPV story booklet | • Compared to women in the control group, screening knowledge scores were also higher among women in the fotonovela, radionovela, and digital story arms | ||||
| • Not had a hysterectomy | • The radionovela was played on an MP3 player and the women listened to a scripted version of the fotonovela story | • However, the study did not find that these score increases varied across active intervention arm for either knowledge of cervical cancer risk (P=0.57) or screening (P=0.16) | ||||
| • Able to complete the questionnaires in English or Spanish | • The digital story with the pictures from the fotonovela and the script of the radionovela was played on an iPad and the participant watched and heard the digital story | • The study did not find that women in the active intervention arms had significantly different levels of intention to undergo pap testing at follow-up (P=0.06) | ||||
| n=160; fotonovela (n=36); radionovela (n=40); digital story (n=42); control (n=42) | • Women randomized to the control arm read the flu vaccine fact sheet | |||||
| 13 | Stoner (2022) (34), cross-sectional, digital media consumption | North America, USA | Infectious disease | • 18–29 years of age | • Participants were asked to respond to scenarios that might occur in real life around COVID-19 vaccination | • In two scenarios that involved discussions with family and friends about vaccination status, most respondents chose to be honest about their vaccination status |
| • Identified as African American or Black | • Within the narrative portion, participants were asked to imagine experiencing different scenarios and to choose among potential actions. Narratives were related to social influences, vaccine fears, and sources of disinformation | • Vaccinated individuals perceived more social pressure and stigma about not being vaccinated than unvaccinated respondents who were not as motivated by social pressure | ||||
| • English proficient | • Scenarios were developed in collaboration with youth advisory board (YAB) members to ensure they reflected the lived experiences of BYA and provided valid insights into decision making | • Personal choice/agency in the face of perceived vaccine risks was a more common theme for unvaccinated respondents | ||||
| • Had access to a personal smartphone | ||||||
| • Resident in either AL, GA, NC (in Southern USA) | ||||||
| n=150 | ||||||
| 14 | Quraishi (2022) (35), cross-sectional, digital media consumption | South Asia, India | Infectious disease | • Residents in the Punhana block community in Nuh, Haryana | The combined TB storytelling and active case finding (ACF) intervention included: | • The mean score after the viewing showed a significant change of 1.37 points (P<0.05) compared to the mean score before the viewing. After stratifying scores across study variables, overall change was highest for young participants, aged under 17 years. For all variables, mean test scores increased after the viewing of the YST TB stories |
| n=218 in the house-to-house strategy | (I) The development of digital TB awareness-raising stories | • Scores for signs and symptoms and TB treatment showed the highest significant changes before and after the viewing of the YST TB stories | ||||
| n=513 in the community-based strategy | (II) The implementation of ACF with the storytelling via house-to-house method and community screening: | • ACF activities resulted in a 56% increase in bacteriologically confirmed TB and an 8% decrease in all forms of TB compared to baseline | ||||
| • House to house: workers conducted house visits to assess TB knowledge, shared digital stories, and screened for TB symptoms | ||||||
| • Community screening: coordinated TB awareness events in conjunction with community activities and did symptom screening | ||||||
| 15 | Adam (2023) (36), RCT, digital media consumption | Sub-Saharan Africa, South Africa | Maternal/reproductive health | • Expectant mothers accessing routine antenatal health care services at the 2 facilities with access to a cell phone/WhatsApp | • Received standard of care +10 SAS videos via WhatsApp | • Adjusting for demographic variables, watching videos increased overall maternal knowledge by an average of 0.28 (95% UI: 0.58–1.16) |
| n=204; intervention (n=106) and control (n=98) | • Control (standard of care) received regular antenatal counseling at a local clinic, offered enrollment into MomConnect (free service offering informational texts for pregnant women) | • Older participants and those with a higher level of education also achieved higher maternal knowledge scores, regardless of exposure | ||||
| 16 | Babalola (2019) (37), RCT, digital media consumption | Sub-Saharan Africa, Nigeria | Maternal/reproductive health | • Aged between 18–35 years | • The Smart Client tool uses fictional role models, who demonstrate the desired behaviors and behavior change process in a drama format, as well as personal stories and examples of smart client dialogues | • The number of women that thought about desired family size remained constant in the control group and increased in the intervention group by 43.2% |
| • Not currently using a non-barrier contraceptive method | • The Smart Client intervention was delivered via mobile phone and included 17 prerecorded calls: 1 welcome call, 13 regular program calls, and 3 quiz calls interspersed | • Between pre-study and post-study, the proportion of participants confident in their ability to discuss concerns about contraceptive methods with a provider increased significantly in the intervention group (from 35.5% to 73.6%), whereas it declined in the control group (from 59.5% to 36.1%) | ||||
| • Owned a mobile phone | • A pre-/post survey was conducted | • Use of modern contraceptive methods increased in the intervention groups (from 28.8% at pre-study to 63.6% at post-study), it remained at the same level in the control group (32.7%) at both time points | ||||
| • Resident in Kaduna City | ||||||
| • Fluent in Hausa | ||||||
| n=565; intervention (n=221) and control (n=344) | ||||||
| 17 | Barcelos (2018) (38), qualitative, digital media creation | North America, USA | Maternal/reproductive health | • Pregnant or parenting adolescent girls/young women | Series of four DST workshops: | Qualitative results grouped in themes: |
| • Participants ranged in age from 17 to 21 years, with an average age of 19.6 years | • Day 1—writing activities about topics that resonated with them (suggested prompts were about motherhood and sexuality) | • Ways of (re)presenting the self: many photos cropped out the face of the mother, potentially speaking to the shame of teen pregnancy | ||||
| • All but two participants identified as Latina; one identified as Middle Eastern and the other as Haitian | • Days 2 & 3—story refinement; recording story narrations; added images from home, took still images, and recorded videos; edited compiled content into a final video narrative | • Knowing bodies: discord between policy and program focuses (contraception, prenatal care) and concerns of teen mothers (transportation to appointments, emotional support) | ||||
| n=31 | • Day 4—final story screening | • Embodied trauma: mothers carry trauma related to teen pregnancy such as family abuse, neglect, depression, housing and food insecurity, violence | ||||
| 18 | Hylton-Kong (2021) (39), RCT, digital media consumption | Latin America and the Caribbean, Jamaica | Maternal/reproductive health | • Jamaican women not using LARC/sterilization | • Enrollment questionnaire and baseline knowledge assessment | • At follow-up, 20 percent more women in the intervention arm perceived IUDs to be very/mostly safe; however, there was no significant difference between arms in implant safety, IUD naturalness, or implant naturalness |
| • Ages 18–25 years | • Watched video about LARC safety (or mosquito control for the control arm) | • No one reported IUD or implant use at follow-up | ||||
| • Sexually active | • Self-affirmation exercise, expressing how much participants agree with personal value statements, followed by reflection on exercise | • Women in each arm did not differ in reported contraception use at follow-up | ||||
| • Not pregnant; no desire for pregnancy in the next year; not breastfeeding | • Optional sign-up for contraceptive counseling at clinic site | • More women in the intervention arm reported discussing the IUD or implant with a provider, but not significantly more than the control arm (71.8 vs. 63.6) | ||||
| n=220 women; intervention (n=113), control (n=112) | • Follow-up questionnaire and interview | |||||
| 19 | Patten (2010) (40), RCT, digital media consumption | North America, USA | Lifestyle topics, maternal/reproductive health† | • Native Alaskan | • Participants received the cessation guide and 15–25 min of standard counseling | • The self-reported tobacco abstinence rate was the same for intervention and control group (6%). The saliva sample confirmed this finding—there was no significant difference between control and intervention group (P=1) |
| • ≥18 years | • Next, the woman viewed the video in private and the counselor spent 10–15 min discussing the video | • The quit attempt since study enrollment was also not significantly different between control (94%) and intervention group (69%) (P=0.09) | ||||
| • ≤24 weeks gestation | • The video was provided to the woman for in-home viewing with family members to elicit their support | |||||
| • Self-reported smoking or Iqmik/ST use in the last 7 days | • Participants were scheduled for four 10–15 min proactive telephone sessions, at weeks 1, 2, 4, and 6. At each session, the counselor reviewed the participant’s tobacco use and assessed motivation level and self-efficacy to quit | |||||
| • Planning to quit in the next 30 days | ||||||
| • Access to a telephone and VCR/DVD player | ||||||
| n=35; intervention (n=17), control (n=18) | ||||||
| 20 | Le (2021) (41), qualitative, photovoice | East Asia and Pacific, Vietnam | Maternal/reproductive health | • Unmarried minority ethnic girls | • Participants attended sessions on SRH topics and photovoice overview | • Key themes: limited access to sexual and reproductive health information and lack of friendly sexual and reproductive health services |
| • Residents of Northern Uplands of Vietnam | • Participants collected pictures with a digital camera over a two-week period | |||||
| • Age 19–22 years old | ||||||
| n=26 | ||||||
| 21 | Song (2012) (42), cross-sectional, digital media creation | North America, USA | Mental health | • Diagnosed with cancer during childhood or adolescence | • The intervention was a mobile social networking and video sharing intervention program (the LIFE Community) | • Having positive stereotypes did not show a significant relationship with depression, but did show a marginally significant positive relationship with cancer survivor efficacy |
| • Aged of 18–29 years | • Participants were invited to use the social networking functionalities of the LIFE Community platform for sharing information and life stories with one another for a period of 6 months | • Describing oneself with antonyms of negative stereotypes showed no significant relationships with depression or with efficacy | ||||
| • Be off treatment for at least 2 years and be cancer free for 5 or more years | • All the activities were conducted via the Web and/or a smartphone that was provided to each participant as part of the intervention program | |||||
| • Cancer could not have created the potential for cognitive impairment | ||||||
| • Live in the Greater Los Angeles area | ||||||
| n=14 | ||||||
| 22 | Song (2022) (43), qualitative, digital media consumption | North America, USA | Mental health | • Age 18–30 years old | • Participants in focus group A (“CHATogether as a peer support group during the pandemic”) were asked to describe their relationship with CHATogether, how they first got involved with the group, what benefits CHATogether had provided, and how COVID-19 had affected them | • Creative expressions through CHATogether enabled stigmatized topics like mental health and racial trauma to become more approachable, intimate, and descriptive. It also provided a healthy coping outlet for developers who were involved in the different component projects |
| • Self-described AAPI ancestry/affiliation | • Participants in focus groups B and C (“Effect of COVID-19 on family harmony”) were asked them to describe their family dynamics before and during the pandemic, any cultural or communication gaps that occurred and/or were heightened during that time, and whether any coping skills were learned as a result of involvement with CHATogether | • CHATogether facilitated conversations about racism, stigma against mental health, and family conflicts. Participants identified this as a starting point for de-stigmatization | ||||
| n=20 | • Participants in focus group D (“Racism and stress on AAPI individuals”) were asked to describe their thoughts and experiences with anti-AAPI discrimination before and during COVID-19, the psychological impact of racism at the individual, family and community levels, different ways to communicate about racism and cultural identity with family | |||||
| 23 | Damian (2022) (44), qualitative, photovoice | North America, USA | Mental health | • Ages 14–24 years | Participants participated in 4 virtual or in-person photovoice trainings: | • Theme 1: concerns related to mental health and substance abuse (e.g., depression/anxiety, trauma, alcohol/illicit drug use, community/domestic violence) |
| • Lived, worked, or attended school in New Britain, CT | • First session: focused on relationship building | • Theme 2: trouble accessing basic human needs; participants noted the inadequate living conditions they’ve experienced as a result of housing insecurity (e.g., poor heating, safety, inability to cook/warm up food, reliable transportation) | ||||
| • Had at least one experience of homelessness/housing insecurity | • Second and third sessions: participants learned photo-taking techniques with feedback sessions | • Theme 3: lack of a social support system; participants expressed not having sufficient support and needing more government engagement | ||||
| • Majority of participants identified as being a person of color (n=12) and female (n=8) | • Fourth session: participant support in their fieldwork taking photos to answer the research question, 1:1 meeting with the research team to explain their photos and select favorite photos to construct a photo narrative | |||||
| n=14 | ||||||
| 24 | Heilemann (2018) (45), qualitative, digital media consumption | North America, USA | Mental health | • English-speaking and -reading | • 3 different videos telling the story of Catalina | • The emotional toll on the main character pushed participants to seek mental health services soon rather than wait |
| • Ages 21–55 years | • The videos were followed by a set of video logs with an interactive feature involving a character who portrayed the main character’s therapist | • Participants related to the fears Catarina had before seeing a therapist, which reflected their own thoughts and feelings | ||||
| • Internet access | • A link on the website led to a blog that provided links and contact information for local and online mental health resources including hotlines | • Seeing Catarina as a Latina that overcame obstacles to seek help empowered participants to do the same | ||||
| • Latina | • Participants had a 1-on-1 interview about their perceptions of the media piece and main character | |||||
| • Elevated symptoms of anxiety and/or depression | ||||||
| • Located in a Southern California metropolitan area | ||||||
| n=28 | ||||||
| 25 | Kendrick (2022) (46), qualitative, digital media creation | North America, Canada | Mental health | • Female-identifying or gender non-conforming young people aged 19–25 years that trade sex | • Participants had a one-on-one semi structured interview with questions about their trading experiences and cellphone use | • Four participants spoke about the loneliness and isolation that they sometimes feel because of not having people in their lives to confide in about their trading experiences |
| • Residents of Toronto or greater Toronto area | • Participants were supported in making a cellphilm (cellphone video) with their key messages | • Three participants expressed hesitancy in disclosing their trading experiences to health care practitioners. They feared judgement from medical professionals and suspected it would impact the quality of service they would receive | ||||
| • Race was not an eligibility requirement, 13/15 were people of color | • Participants were invited to a screening and participatory analysis meeting to identify themes | |||||
| n=15 | ||||||
| 26 | McMorrow (2017) (47), qualitative, photovoice | North America, USA | Mental health | • 18 years or older | • Semi-structured interviews pre and post photovoice activities to understand participants’ experiences with and perceptions of health and health care in the United States, as well as general experiences of integration into American society | • Difficulty accessing health system leads to frustration and confusion |
| • Female | • 6 photovoice sessions covering project introduction, ethics, camera practice, photovoice assignments, group discussion of photos, closing celebration | • Challenges understanding and accessing insurance, confusion around billing, copays | ||||
| • Self-identified as refugee from DRC | • Frustration with needing an appointment and long wait times even with an appointment | |||||
| n=16 | • Difficulty navigating cultural differences, like needing a prescription at the pharmacy | |||||
| • Cultural differences in standard nutrition—understanding what is “healthy” from the food available | ||||||
| • Difficulty managing chronic illnesses like TB, HIV, diabetes | ||||||
| 27 | Ofoegbu (2020) (48), RCT, digital media consumption | Sub-Saharan Africa, Nigeria | Mental health | • Athletes with one of the following impairments: impaired muscle power, impaired passive range of movement, limb deficiency, leg length difference, short stature, hypertonia, ataxia, athetosis and visual impairment | • Participants attended weekly sessions where they watched digital stories on themes of burnout, reflected on the videos, and participated in group discussions | • The intervention group (pre-test =32.58±1.89, post-test =26.48±2.11, follow-up =25.71±2.22) average burnout scores decreased progressively over the period of intervention, but this was not the case in the control group |
| • Consent from parent or guardian if under 18 | • Sessions ended with rational emotive behavior therapy to identify stressors and coping mechanisms | • The results suggest that the DST intervention was significantly effective in reducing athletes’ burnout thoughts both across the different time periods and within the intervention group | ||||
| • Ages 11–21 years | • Burnout was measured with a pre and post questionnaire and with a 3-month follow up | |||||
| • Athlete scored high on Athlete Burnout Questionnaire | ||||||
| n=171; intervention (n=85), control (n=86) | ||||||
| 28 | Ward (2018) (49), qualitative, digital media creation | North America, Canada | Mental health | Indigenous population from Terrace, British Columbia, aged 19–25 years | • Three days DST workshop that began with a set of introductory activities and the primary investigator did a presentation detailing an introduction to digital stories and how to create storyboards | • During focus groups, youth participants defined mental health as “…taking care of your body, your emotions, physically, emotionally (which is) different than depression and anxiety” and as “chemical imbalances in the brain”. Some had never heard the term mental health before |
| n=8 | • Youth agreed upon the question “what does mental health/wellness mean to you?” as a starting point for their digital stories | • Youth spoke supportively about technology as an avenue for their generation to access services or resources with confidentiality | ||||
| • Youth shared their digital stories with each other on the last day and were given their digital story on a CD to take home | • Most participants preferred culturally tailored MH information that was relevant to their understanding, including a focus on holism and wellness that seems to be true for Indigenous youth elsewhere | |||||
| 29 | Yuen (2021) (50), RCT, digital media consumption | East Asia and Pacific, Hong Kong, China | Mental health | • Students aged 18 years or older, fluent in Chinese, enrolled at The Chinese University of Hong Kong | • In the immersive animation condition, participants were immersed in an animated story as the female protagonist, Yan, who had mixed anxiety and depressive disorder | • Post experiment, the immersive animation group had significantly lower public stigma than the control group |
| n=206; immersive animation condition (n=72) text condition (n=65) and control (n=69) | • In the text condition, participants read the text and listened with audio narration to the same story as the immersive animation condition | • The text group yielded similar results by having significantly lower public stigma than the control group (P=0.007) | ||||
| • In the control condition, participants watched a 360° exoplanet virtual reality video with corresponding audio and sound effects | • A similar pattern of results was also observed at the 1-week follow-up | |||||
| • Public stigma did not significantly differ between post experiment and follow-up (P=0.19), implying that the effect at post experiment was sustained at follow-up for the immersive animation group | ||||||
| 30 | Abdel-Aziz (2022) (51), cross-sectional, digital media creation | Middle East and North Africa, Egypt | Lifestyle topics | • Male and female participants from the International Federation of Medical Students Association | Four-day workshop to build capacity in DST and video production | • 14.5% increase in knowledge on healthy life topics |
| n=120 medical students | • Day 1: pre-test assessment & training on topics | • 18.1% increase in knowledge on nutrition topics | ||||
| • Day 2: video training and documentation | • 19.7% increase in knowledge on family health topics | |||||
| • Day 3: HCD theories and models training; role play | • 24.2% increase in knowledge on disease topics | |||||
| • Day 4: presentation and feedback | ||||||
| Post-workshop activities and support | ||||||
| 31 | Davidson (2021) (52), qualitative, digital media creation | North America, USA | Lifestyle topics | • Ages 15–24 years | • Participants attended a 3-day DST workshop to create their own stories | • Indications that DST intervention increased participant willingness to supply a hair sample |
| • Pregnant | • Semi-structured interviews were conducted with participants about the hair collection process | • Trust built with community-based participatory researchers may increase participant willingness to pursue longitudinal follow up | ||||
| • Black and/or Latina | • Participant confusion about purpose of hair sample indicates the need for medical practitioners to be very clear about use of biological sample | |||||
| • Score at a 10 or above on the EPDS | ||||||
| n=8 | ||||||
| 32 | Ip (2007) (53), qualitative, digital media creation | North America, Canada | Lifestyle topics | • Youths from Inuvik between the ages of 10 and 22 years | • Disposable cameras were distributed to 35 youths; interviews structured around the photographs were recorded with 14 youths | • Smoking: participants mention that this is a youth-specific problem, especially because there’s “nothing to do” |
| n=14 | • Thematic analysis of the interview transcripts was completed; the themes identified formed the basis of a 19-minute video featuring 4 of the youths | • Alcohol/drug abuse: noted reasons like depression and isolation for substance use | ||||
| • Teen pregnancy: participants discuss unwanted births | ||||||
| • Participants suggested an improved skate park, better education, and peer support groups to help resolve these issues | ||||||
| 33 | Nyambe (2022) (54), qualitative, photovoice | Sub-Saharan Africa, Zambia | Lifestyle topics | • Youth, age <25 years old | • Training on camera usage and research ethics | • Participants describe unsanitary WASH practices done out of habit or ignorance |
| • Resided in research sites | • Data collection—each participant took 2–5 pictures over 4 days to answer the question “What is WASH in your community?” | • Limited access to WASH facilities and lack of knowledge contribute to poor practice | ||||
| • Other inclusion criteria not clear | • Each participant selected 2 photos that best expressed their views | • WASH practices are hazardous to health via contamination, unregulated usage of facilities, and poor maintenance | ||||
| n=16 total |
†, denotes more than 1 topic included. AAPI, Asian American/Pacific Islander; ACF, active case finding; ART, antiretroviral therapy; BYA, black young adults; COVID-19, coronavirus disease 2019; DVD, digital versatile disc; DST, digital storytelling; ED, emergency department; EPDS, Edinburgh postnatal depression scale; FGDS, focus group discussions; HCD, human-centered design; HIV, human immunodeficiency virus; HPV, human papillomavirus; IUD, intrauterine device; LARC, long-acting reversible contraception; MH, mental health; MP3, MPEG-1 Audio Layer III; RCT, randomized control trial; REBT, rational, emotive, and behavioral techniques; SAS, short-animated storytelling; SE, standard error; SRH, self-rated health; TB, tuberculosis; UI, uncertainty interval; VCR, video cassette recorder; WASH, water, sanitation, hygiene.
Figure 2.
Heat map of health topics by DST typea,b. aThese studies used videos created by other community members (not the study participants) from DST workshops. bNumbers in the table refer to article number (7,23-40), and shown in the reference list (41-54). DST, digital storytelling.
Infectious diseases
Fourteen articles discussed infectious disease topics, with nine focused on human immunodeficiency virus (HIV) (23-31), two studies focused on HPV (32,33), two focused on COVID-19 (7,34), and one focused on tuberculosis (TB) (35).
HIV
Among the nine studies that addressed themes related to HIV (23-31), four qualitative studies (24,25,30,31) and one mixed-methods study (29) invited participants to attend workshops and create stories related to HIV within their communities. Among First Nations communities in Canada, participants reported that substance abuse is a driver of youth acquiring HIV and that family and elders play an important role in healing and keeping young people well (25). Participants also reported that digital stories provided an opportunity to de-stigmatize HIV and address myths and misconceptions. Participants thought stories had a positive impact on the youth themselves, their communities, and amplified their voices to policy-makers (24).
Through a DST workshop, Black South African women created stories that discussed issues related to HIV testing, including fear of testing and subsequent depression following an HIV diagnosis. Stories also addressed starting antiretroviral therapy (ART), including fear of possible side effects, and how perceived or experienced stigma can threaten disclosure, which is key to successful ART adherence (30). Those stories were then shared with women attending local health clinics in a pre-post design; authors found that, after viewing stories, survey respondents had greater hope to live again and thought ART could help regain health. However, fewer participants in the post-screening group thought one could raise a family while on ART (30). Qualitatively, participants thought videos could discourage stigma and bolster social support, thereby encouraging testing and disclosure (29). HIV-positive youth from Zimbabwe also expressed that the DST process helped them build confidence and a better sense of control and freedom in their lives (31).
Among four studies that exposed participants to digital stories, two used cross-sectional designs (23,27), while two presented results from RCTs (26,28). In Nigeria, participants were exposed to an educational DST intervention where adolescent college students learned from and about other people’s HIV-related lived experiences to increase their HIV risk perception. Those who participated in the DST intervention experienced a significant increase in HIV risk perception and HIV knowledge than those not exposed to the intervention, with effects sustained over time (28). Similarly, in Ecuador, participants were exposed to a digital media intervention which included (I) a fact-based presentation, (II) video stories from two individuals living with HIV, and (III) a structured group discussion. Intervention participants had higher HIV knowledge and lower HIV stigma scores than the comparison group (23). However, results from an RCT did not find that DST interventions (interactive gaming and DST) were effective at improving HIV/STI knowledge among youth in the USA (26). Although both study arms in the RCT showed knowledge improvements in some areas, there was a decrease in knowledge among most of the questions presented, which was comparable across study groups. Finally, a cross-sectional study of Latina students exposed to a soap opera series depicting women navigating high risk sexual scenarios found that participants thought women watching the videos would be more likely to get an HIV test and “definitely” or “probably” more likely to ask a partner to use a condom (27).
COVID-19
Two studies (one qualitative, one cross-sectional) examined factors associated with COVID-19 vaccine uptake among Black young adults in the southern USA (7,34). The qualitative study involving participants in the DST creation process found that misinformation and distrust of the medical establishment contributed to vaccine hesitancy, while fear of getting COVID-19, of losing a loved one to the disease, or of concerns that chronic underlying conditions could make someone more vulnerable to COVID-19 were strong motivating factors for vaccine uptake (7). The cross-sectional survey asking participants to respond to hypothetical COVID-19 vaccination scenarios, after creating digital stories, also found perceived risks and vaccine safety to be barriers to vaccine uptake. The theme of communal respect was also elicited, with most respondents choosing to be honest about their vaccination status (34).
HPV
Although two studies (32,33) utilized RCTs to assess the effectiveness of digital stories on behaviors related to HPV and cervical cancer prevention, only one found the video intervention to be effective in increasing HPV vaccine uptake (32). The successful intervention was a pilot RCT to evaluate the preliminary effectiveness of a storytelling video intervention using mobile, Web-based technology with a sample of 104 Korean American college-aged women. At two months follow-up, the experimental group (storytelling video) was twice as likely to have gotten the HPV vaccine as the comparison group [information-based written material (32)].
TB
A cross-sectional pre-post survey in India reported that there was an increase in TB knowledge scores and active case finding activities, as well as a decrease in all forms of TB after participants watched video stories on TB signs and symptoms, treatment, prevention, stigma and discrimination (35).
Maternal and reproductive health
Eight studies focused on maternal and reproductive health topics (32,33,36-41), with two utilizing qualitative methods (38,41) and six using RCTs (32,33,36,37,39,40). The two qualitative studies encouraged participants to create their own digital stories either with videos (38) or PhotoVoice (41) to convey their thoughts and opinions around sexual and reproductive themes within their own communities. Latina participants identified themes of stigma, trauma, and lack of policy-level support around teen pregnancy and motherhood (38). In an ethnic minority group in northern Vietnam, unmarried women used PhotoVoice to capture their limited access to sexual and reproductive health information and services (41).
Among the six studies (32,33,36,37,39,40) using RCT designs, digital stories were created by researchers and shown to participants rather than asking participants to create their own as part of the intervention. Three studies from South Africa (36), Nigeria (37), and Jamaica (39) found increased post-test knowledge on maternal health topics, including family planning, contraception, and antenatal care. Only one RCT reported no significant difference in outcomes (tobacco use status among pregnant Native Alaskan women) as a result of viewing a digital story compared to the control group, potentially due to a small sample size (n=35) (40). Two references were also tagged as addressing infectious diseases [e.g., reproductive health and HPV (32,33)] and are discussed above.
Mental health
Ten articles reporting findings related to mental health (31,42-50), with more than half using qualitative methods (31,43-47,49), two utilizing RCTs (48,50), and one using a cross-sectional approach (42). Mental health references were further sorted into the following themes.
Depression
Two studies examined themes related to depression (42,45). In a qualitative study of Latina young adults with symptoms of depression, being exposed to a dramatic story-based transmedia intervention reporting the experience of a fictional character helped participants empathize with the character’s fears about seeing a therapist. Participants ultimately reported that the character’s experience empowered them to seek mental health services (45). However, a cross-sectional study exploring attitudes of cancer survivorship found that having stories with positive stereotypes of cancer survivorship (e.g., cancer survivors as brave) was not significantly related to depression scores (42).
Social support
Three studies that involved participants in creating DST discussed the importance of social support on mental health (31,44,46). Young HIV-positive adults in Zimbabwe discussed through stories the impact of social and emotional support and acceptance on their overall mental health (31). They found a therapeutic role in the DST intervention, with many describing a desire to live, in contrast to earlier feelings of hopelessness and suicidal ideation (31). Similarly, young adults experiencing homelessness and participating in a PhotoVoice study discussed a lack of social or financial support and trouble taking care of basic human needs (44). A lack of community support was also highlighted by Canadian young adults who sell sex participating in a digital video creation intervention. Participants felt isolated from others and unable to share their experiences trading sex, including with healthcare practitioners, who they presumed would judge them and provide lower quality care (46).
Stigma
DST interventions also served as a pathway for de-stigmatizing mental health topics (43,49,50). In a three-aim RCT, young adults participating in an immersive virtual reality intervention had significantly lower scores of public stigma toward mental health than control participants, though participants in a text-based intervention also experienced significantly lower scores. These results were sustained during a post-experiment follow-up period (50). A peer support group utilizing various forms of DST facilitated discussions around sensitive topics, like racism, stigma against mental health, and family conflicts. Participants thought the intervention made stigmatized topics more approachable by facilitating difficult, much-needed conversations (43). In Canada, some indigenous young adults experiencing mental health challenges and participating in a DST workshop indicated that digital platforms with culturally appropriate mental health information would be important resources to support accessing services (49).
Other mental health topics
DST interventions have also been used to address unique concepts like burnout and cultural challenges. An RCT with young adult athletes in Nigeria participating in weekly digital story sessions on burnout and rational emotive behavior therapy found that average burnout scores decreased over time among the intervention but not the control group (48). Among Congolese refugees in the USA, PhotoVoice results highlighted that refugees had difficulty accessing the USA health system, understanding and accessing insurance, and difficulty navigating cultural differences, all of which yielded feelings of frustration and confusion (47).
Behavioral/other health topics
Five studies addressed other behavioral and other health topics (40,51-54), with three using qualitative (52-54) and two using quantitative methods [cross-sectional (51), RCT (40)]. Four studies described ways to amplify community voices through DST creation (51-54). In Egypt, a cross-sectional pre-post study demonstrated how using DST to create stories on social and health problems affecting local communities can improve knowledge scores on issues including healthy lifestyles, nutrition, family health, and infectious disease issues (51). Three qualitative studies provided a deeper exploration of lifestyle issues for affected communities. For example, Ip (53) used a photonovella process with Inuvik young adults in Canada to understand issues related to adolescent health concerns. A thematic analysis showed how smoking, alcohol and drug abuse, and teen pregnancy were key issues in their communities, which could be partially resolved through peer support groups and better education (53). A study from Zambia also used PhotoVoice to examine issues on water, sanitation, and hygiene (WASH) issues, finding that participants described how limited community access to WASH facilities led to poor WASH practices and that some WASH habits are done out of habit or due to lack of knowledge (54). A qualitative study among pregnant Black and Latina women found that DST could help improve willingness to participate in research through the trust built through the CBPR team. The DST workshop allowed potential participants to explore acceptability of hair sampling for cortisol analysis during pregnancy, including deepening their understanding of the process and generating interest in study results (52).
Lastly, one RCT conducted among pregnant Alaska Native women exposed to a digital story about a pregnant woman within their community working to abstain from smoking reported the same smoking abstinence rates and quit attempt rates as participants in the control group (40).
Health outcomes by DST type included in the study
Table 4 shows an additional outcome sorting exercise in which we summarize the role of the two main DST types (e.g., media creation and consumption) in addressing health outcomes. Studies that involved participants in the DST creation process were inclusive of PhotoVoice, amplified the voices of young adults of color and shed light on health topics pertinent to their communities (7,24,25,30,31,38,41,43,44,46,47,49,53,54). However, only one study assessed how a video sharing intervention program could potentially influence behavioral changes (42). Four media creation studies examined effects on attitude, while none assessed participant knowledge. Beyond these outcomes, we note that two studies described how DST workshop participation built trust with CBPR researchers (52) and enabled a better sense of control in their lives to cope with their health status (31).
Table 4. Summary of studies by DST intervention and evidence type.
| Items | Identifying social determinants of health | Knowledge | Attitude | Behavior |
|---|---|---|---|---|
| DST creation | McMorrow, 2017 (47)† Maragh-Bass, 2022 (7) Damian, 2022 (44)† Barcelos, 2018 (38) Ward, 2018 (49) Flicker, 2019 (25) Flicker, 2020 (24) Song, 2022 (43) Kendrick, 2022 (46) Ip, 2007 (53)‡ Nyambe, 2022 (54)† Willis, 2014 (31) Treffry-Goatley, 2016 (30) Le, 2021 (41)† |
Davidson, 2021 (+) (52) Song, 2012 (=) (42) Willis, 2014 (+) (31) Abdel-Aziz, 2022 (+) (51) |
Song, 2012 (−) (42) | |
| DST consumption | Stoner, 2022 (34) | Hill, 2022 (+ and −) (26) Thompson, 2019 (+) (33) Patten, 2010 (+) (40)‡ Adam, 2023 (+) (36)‡ Ofoegbu, 2020 (+) (28)‡ Quraishi, 2022 (+) (35) Casapulla, 2022 (+) (23) |
Treffry-Goatley, 2016 (+) (30) Heilemann, 2018 (+) (45) Jones, 2022 (+) Kim, 2020 (+) (32)‡ Patten, 2010 (=) (40)‡ Babalola, 2019 (+) (37) Ofoegbu, 2020 (+) (28)‡ Treffry-Goatley, 2018 (+) (29) Yuen, 2021 (+) (50)‡ Quraishi, 2022 (+) (35) Casapulla, 2022 (+) (23) Hylton-Kong, 2021 (+) (39)‡ |
Thompson, 2019 (=) (33) Kim, 2020 (+) (32)‡ Patten, 2010 (=) (40)‡ Ofoegbu, 2020 (+) (48)‡ Babalola, 2019 (+) (37) Quraishi, 2022 (+) (35) Hylton-Kong, 2021 (=) (39)‡ |
†, indicates that studies used Photovoice specifically. ‡, indicates that studies included follow-up assessment. (+) indicates that there is evidence for positive change in knowledge, attitude, and/or behavior. (−) indicates that there is evidence for negative change in knowledge, attitude, and/or behavior. (=) indicates that there is no change in knowledge, attitude, and/or behavior. DST, digital storytelling.
In contrast to media creation references, there was substantial evidence on how DST consumption could affect participants’ knowledge, attitudes, and behaviors. Most studies that exposed participants to a DST intervention provided evidence of positive changes in participants’ knowledge and attitudes regarding the studied health topics: infectious diseases (23,26-30,32,33,35,39), maternal and reproductive health (33,36,37,40), and mental health (45,50). Seven studies directly measured a health behavioral change, and approximately half of those (33,39,40) did not find sustained changes at follow-up. Only six studies included measures of knowledge, attitudes, and behavioral changes at various follow-up periods: one month (36); two months (28,32,40); and three months (39,48).
Discussion
This systematic review examined the role of DST in exploring health-related issues and affecting change in knowledge, attitudes, and behaviors among young adults of color across the globe since 2000. As DST has more recently emerged in the public health space, this exploratory review found that DST has primarily been used to address issues related to infectious disease, especially HIV, for young adults of color. DST has also been used in the fields of maternal and reproductive health, mental health, and to address miscellaneous behavioral health issues. DST is a global approach for reaching young adults of color; although most studies were conducted in Canada and the USA, a growing number were conducted in Africa, Asia, and Central and South America.
Across and irrespective of thematic areas, we found that DST has been implemented primarily through two distinct mechanisms: media creation or media consumption. For digital media creation, qualitative methods are most often used to underscore prominent social determinants of health and highlight where and how interventions could be designed to improve health outcomes for young adults of color. Given the complexity of health-related issues for youth experiencing marginalization, qualitative methods are uniquely poised to capture the multi-faceted challenges and potential solutions. For example, DST interventions have elucidated how stigma, trauma, and social support can directly affect one’s ability to seek or receive appropriate health services. Using these findings to design programs that intervene on these issues could yield improvements in physical or mental health outcomes for young adults of color. By contrast, digital media consumption references more often involve quantitative methods, in which participants were exposed to key stories and messages, then evaluated to understand whether a change had occurred in knowledge, attitudes, or behaviors. Researchers are more often assessing the strength of DST to act as a knowledge or behavior modifier, rather than using it as a tool to more deeply understand a complex issue. Regardless of how DST was used, evidence suggests the promising potential of DST to amplify the voices of young adults of color and engage them as owners and influencers in their communities’ health outcomes.
Although most studies distinguished between leveraging digital media creation versus consumption, it is worth noting that some studies utilized a two-phased approach, first having community members create and share their stories, then presenting these products to other audiences within the same community (28,29,32-36,39,40,43,45,48). Where and when possible, we recommend this approach as a best practice for designing and implementing a DST intervention, since using culturally appropriate materials created by community members themselves could further strengthen DST’s effectiveness as an intervention to positively influence health knowledge, attitude, and behavior change (49). Utilizing materials created by community members, some studies also evaluated DST as an intervention, assessing the level of exposure (37), participants’ acceptability and willingness to recommend the intervention (40), the intervention’s uptake (35), and the quality and relatability of the materials (29). Since DST is still a new method in the social behavior change research toolkit, we recommend that future research include an implementation evaluation process when designing and conducting DST interventions (55) to better assess its value to participants and replicability in future studies.
This review highlights several strengths of DST. For instance, using a CBPR approach, DST workshops enabled youth to tell and share their stories, demonstrating its potential as a community empowerment approach with groups experiencing marginalization. In Canada, several references noted how DST amplified the voices of Indigenous youth (24,25,40,49,53). DST may be well-suited for this role given how it reflects ancient Indigenous oral traditions (56-59), making it a more comfortable and accessible process for this unique population. Some studies also addressed intersectionality and amplifying the voices of other socially marginalized groups: ethnic minority girls in rural Vietnam (41), HIV-positive adolescents in South Africa (29,30) and Zimbabwe (31), youth without homes in the USA (44), and youth who traded sex in Canada (46). By using DST as a tool and platform for youth to tell stories centering their own experience, DST is useful for understanding drivers of key health-related issues, barriers to care-seeking behaviors, and brainstorming potential community-based solutions. These findings echo messages from a recent systematic review reporting that DST is an empowering method effective at honoring local knowledge and evoking change among various groups (60).
As an intervention exposing youth to digital media, DST has shown promising evidence in improving health knowledge scores and attitude changes (23,26-30,32,33,35-37,39,40,45,50). However, only a few studies examined behavior changes and among these, there was mixed evidence on whether DST effectively influences health behaviors (32,33,35,37,39,40,48). These mixed results represent an opportunity for future research on DST as an intervention for changing health-related attitudes, knowledge, and behaviors that use more robust study designs. As summarized in our quality assessment, most cross-sectional studies lacked valid and reliable measures, suggesting a need for more research that utilizes a standardized measurement approach to assess DST interventions. The lack of consensus on behavioral findings could also be due to the limited number of references and that among these, only a few had a follow-up assessment (28,32,36,39,40,48), with the longest being at 3 months.
More thought should also be given to the distal and proximal outcomes that could be achieved. For example, it may be possible to improve knowledge on a given topic through exposure to digital stories, but changing attitudes and behaviors may require a longer period of exposure. Deciding to get vaccinated, for example, may require multiple conversations and message exposures. Future studies assessing the effectiveness of DST intervention should comprehensively measure knowledge, attitude, and behaviors, and have multiple follow-ups to adequately assess effectiveness over time. Our review also did not focus exclusively on the role of social media platforms in the generation, dissemination, and/or influence of DST, but future research should particularly explore these facets using platforms most popular among our target demographic of young adults of color, such as TikTok, X, and Instagram. We return to this consideration in our Conclusions section.
Next, our systematic review highlighted that there may be benefits to conducting research utilizing a DST approach that extends beyond the outcomes we initially intend to measure. In addition to amplifying under-represented voices and shedding light on important health topics pertinent to their communities, the DST intervention itself had a positive impact on youth as a therapeutic tool, empowering their autonomy and improving mental health (29,31). Previous studies examining DST had also described the method as transformative and cathartic, allowing participants to articulate and understand traumatic experiences, as well as explore influential communal and cultural factors that serve either as an enabler or barrier to their health-seeking behaviors (61,62). Beyond seeking health care, populations of color—especially young adults of color—have been under-represented in the clinical research space, with the National Institutes of Health releasing specific guidelines for how to improve inclusive participation rates (63). At least one study in this review highlighted how DST can be an effective method for increasing confidence in the research community, thereby improving young adults’ willingness to participate in research (52). For example, increased engagement with research staff may allow for a more nuanced understanding of the informed consent process and if/how biological specimens may be used, which is critical among populations like Black Americans that have historic distrust of the research process (64,65). Benefits such as these cannot be understated and further emphasize the power of storytelling and generating safe spaces for young people, especially ones experiencing marginalization and/or minimization.
Strengths & limitations
We utilized a systematic approach guided by the PRISMA reporting guidelines, which reduces bias at various phases of the review process. Given the diverse ways that DST can be used as a research tool, we distinguished the role of DST on health-related outcomes by comparing DST creation (including PhotoVoice) vs. consumption. For studies assessing DST consumption, denoting the media source may provide insight into best practices for future DST study design. Finally, we covered a breadth of health topics and outcomes globally since 2000. This allows for a more comprehensive understanding of the role of DST in understanding and shaping health behaviors, attitudes, and practices.
Nevertheless, there are certain limitations to this review. For instance, this review aims to be exhaustive, but relevant articles may have been inadvertently excluded. In our goal to be exhaustive in our review of health-related knowledge, attitudes, and practices, it was challenging to compare methods and results across health topics and outcomes. Consequently, a meta-analysis of findings was not possible. Furthermore, despite the inclusion of multiple geographic regions, the assessment was not conducted by region. Although we focused on young adults of color, we did not distinguish findings by ethnicity or from countries where these groups were the minority or the majority of the population. In many cases, information was not available on an individual’s specific ethnicity or identity, meaning our discussion is more generalized to populations of color, rather than being able to provide a deeper analysis for certain groups.
Conclusions
Among young adults of color, DST interventions have been used over the last two decades to more deeply explore the social determinants of health and to affect knowledge, attitudes, and behaviors. Participants are often involved in creating stories, including through PhotoVoice, or are exposed to stories created by community members. In examining the role of DST in influencing health outcomes, DST is useful for understanding drivers of key health-related issues, barriers to care-seeking behavior, and brainstorming potential community-based solutions among young adults of color. As an intervention, DST has shown some promising evidence in improving health knowledge scores, but there is mixed evidence on whether DST effectively influences health behaviors. More research is needed to assess the exposure to DST and its influence on outcomes to assess the return on investment for utilizing DST methods (both consumption and production of DST). Moreover, future studies should utilize robust quasi-experimental or RCT design and have multiple follow-ups to adequately assess effectiveness over time, with more robust measurement of factors such as: (I) how populations were engaged in production and/or consumption of DST; (II) level of utilization of DST throughout intervention components; and (III) exposure to DST in different formats (including with and without social media). Through the process of completing our study, we note some overlap between social media interventions with DST. Several studies included in our research utilize social media channels to recruit, engage, create, and disseminate digital stories with young people of color as the focus. However, DST differs from social media interventions in that (I) DST does not have to engage with social media; (II) DST and its potential impact of health behavior change requires nuance in consideration of different social media platforms (i.e., TikTok may be more conducive to recruiting young people, while Instagram or YouTube reels, which offer longer time formats, may be more conducive to intervention content delivery of results dissemination). Given that these types of nuances are not well documented and beyond the scope of our work, future research should focus on the role of DST in social media interventions, particularly when using multiple platforms and engaging with youth people of color across multiple contexts and health behavior changes. Finally, DST has the potential to inform and increase avenues of community engagement, such as the dissemination of study results. It is also important to examine the various benefits to utilizing a DST approach that extends beyond study outcomes, including empowering groups to participate in research and amplifying the voices of young people experiencing marginalization to share results and promote sustainable behavior change in their communities. We are confident such approaches would result in better community awareness, engagement, and more adoption of health behaviors overall, given that approaches would be better tailored than, for example, commissioning media agencies to produce content for these communities without their direct ownership and involvement.
Supplementary
The article’s supplementary files as
Acknowledgments
We would like to thank our youth advisory board members and community advisory board members for their involvement in the research project and manuscript. We would also like to thank all young adults who participated in the study and co-investigators on the study that are not listed as authors.
Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. This work did not include research with human subjects. This study received a non-human subjects research determination from FHI 360’s Protection of Human Subjects Committee.
Footnotes
Reporting Checklist: The authors have completed the PRISMA reporting checklist. Available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-65/rc
Funding: Research reported in this study was supported by the National Institute of Minority Health Disparities (NIMHD) of the National Institutes of Health (NIH) (No. R01MD016834). The content is solely the responsibility of the authors and does not necessarily represent the official views of the NIH.
Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://mhealth.amegroups.com/article/view/10.21037/mhealth-24-65/coif). L.B.H.W. serves as an unpaid editorial board member of mHealth from September 2024 to December 2026. The other authors have no conflicts of interest to declare.
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