TABLE 3.
Key characteristics of 10 studies included for final analysis. United Kingdom, 2021.
| Author/title/year | Population studied and objective/s | Outputs/outcomes/results | Take-away (value of storytelling as shown by study) |
|---|---|---|---|
| DiFulvio GT, Gubrium AC, et al. Digital Storytelling as a Narrative Health Promotion Process: Evaluation of a Pilot Study. Int Q Community Health Educ. 2016; 36(3): 157−164 | Puerto Rican, socially deprived women of 15−21 years. Pregnant, parents, or non-parents | Quantitative: At 3 months, participants (ppts) experienced greater positive social interactions (p=0.076); “Instrumentality” (defined as “attitude towards enjoying physical sex”) lowered (p = 0.097). Optimism for future increased immediately after workshop but not at 3 months (p = 0.093) | One of few studies to assess benefits of the DST process for ppts: created positive feelings associated with telling one’s own story in a group, and having their voices heard. Relevance to marginalized, specific and culturally-defined groups who benefit most from ST |
| To explore the process of DST as an intervention to encourage positive change in KAB/P towards sexual health, inc. self-esteem, social support, and control of future Quantitative scales and qualitative data | |||
| Extracted info and intervention | Qualitative: ST led to improvements in: Truth telling - ppts told their own story rather than being the subject of someone else’s story. Affective impact- moved emotionally by listening to others’ stories, and telling and having their stories listened to. Empowerment - reported feeling confident, strong and respected, optimistic, accomplished, and able to speak up after writing their stories | Qualitative results of storytelling evaluation were more revealing than quantitative findings. Sample size (29 stories) too small for meaningful, statistically significant quantitative findings. (see Gubrium below for qualitative findings) | |
| Evaluated | |||
| Gubrium AC, Fiddian-Green A, Lowe S, DiFulvio G, Del Toro-Mejías L. Measuring Down: Evaluating Digital Storytelling as a Process for Narrative Health Promotion. Qual Health Res. 2016; 26(13): 1787−1801. | Same population as above (a different analysis of same study) | Qualitative: Truth telling (as above). Cathartic and therapeutic: through the crafting of a digital story that voices authentic experience. Sense making: reflected on personal and social memories, writing made sense of their lived experiences, instilled a sense of control over health and experiences to formulate goals for the future. Solidarity: ppts feel connected to others and less socially isolated in their experiences. Social support: space for acceptance, overcoming fear of social stigma. Empathy: opportunity to listen to others’ stories, encouraging empathy and understanding | The variety of qualitative data sources including workshop transcripts, follow-up interviews and ppt evaluations together instilled a sense of trustworthiness (validity) in the data |
| Aimed to assess the process of ppts making their own digital stories. This analysis “measured down” to reflect the locally grounded, felt experiences of ppts who engage in the process, as current quantitative scales do not “measure up” to accurately capture these effects | |||
| Extracted info and intervention | Qualitative findings: “present a broader picture of the benefits of the DST process, substantiating claim that the DST process positively affects participants and has tremendous potential as a mechanism for health promotion” | ||
| Evaluated | |||
| Hartling L, Scott S, Pandya R, Johnson D, Bishop T, Klassen TP. Storytelling as a communication tool for health consumers: development of an intervention for parents of children with croup. Stories to communicate health information. BMC Pediatr. 2010; 10:64. Published 2010 Sep 2 | Parents of children admitted to emergency department (ED) with croup | Parents valued the writer’s ability to capture the parents’ emotions. Reviewers (one medic and one English professor) considered the stories an excellent potential source of medical advice for parents | Take-aways relate to story development. Challenges identified staying true to the story versus being evidence based especially for this “medical” text; balancing comprehensive content and wider application while being succinct. This study deviates from phenomenological idea (the way the world appears to the person experiencing the world) of accepting each personal story on its own merits without modifying |
| To use ppt stories in the development of a booklet for parents (and children) | Conflict between ST and authenticity based on truthful experiences vs. correct medical knowledge | Story length, reading level, representation of different demographics and illness experiences, graphics and layout all important. The process also showed temptation to modify a story if the story does not quite fit the end purpose (is diversion from authenticity that might be justified depending on end goal) | |
| After interviewing parents in the ED, a writer wrote a typical story (based on real experiences) for the booklet. Booklet aimed to provide info and reduce anxieties around such an ED visit. Focus groups discussed story development and general perceptions of stories; content and emotional by-products of the stories; graphics etc. | |||
| Extracted info and intervention | Used illustrations broadened appeal to kids and parents (practical tool for explaining to the child what may happen in the ED) Ease of relating to characters important | ||
| Evaluated | |||
| (Not part of final analysis because effectively an extension of the above study adding evaluation of the story booklet use in the ED.) Hartling L, Scott SD, Johnson DW, Bishop T, Klassen TP. A Randomized Controlled Trial of Storytelling as a Communication Tool. PLoS One. 2013; 8(10): 1–11 | To compare effectiveness of story booklet compared to standard information sheets for parents of children with croup attending the ED using measures of anxiety between recruitment in ED and discharge, and follow up phone interviews. 205 received standard information booklets, and 208 the story booklet | There was no significant difference in the primary outcome of change in parental anxiety between recruitment and ED discharge (5 points change for story group vs.6 points for comparison gp, p = 0.78). Story group showed significantly greater decision regret regarding decision to go to the ED (p < 0.001): 6.7% of the story group vs. 1.5% of the comparison group | The finding of greater regret in deciding to attend the ED might be related to parents feeling that they could have managed at home and avoided the trip to the ED after reading the stories |
| Joshi A. Multiple sexual partners: perceptions of young men in Uganda. J Health Organ Manag. 2010; 24(5): 520–527 | Teen boys 15-19yrs, in Uganda | Personal stories written, and also wrote and acted out dramas. ST unveiled subtle, often unarticulated influences on ppt’s behavior e.g., ignorance of health risks (often assumed to be the problem) only partly explains risky sexual behavior | ST unpacked the less obvious behavioral reasons and insights on the importance of adhering to the social expectations of gender roles including MSP. ST in this study used proxy characters in the dramas and ST was written to overcome, both measures to overcome inhibitions around a sensitive topic |
| To derive and understand perceptions and KABs of regarding their sexual behavior (sex with multiple sexual partners, MSP), and the drivers of MSP, within the context of HIV. Ultimately, aims to inform health promotion in order to reduce HIV incidence in this group | |||
| Extract info | Ppts believe risky sexual behavior asserts masculinity - this outweighs any health risks. MSP associated with power e.g., the provider, in charge, the decision-maker. Any risks associated with MSP identified by ppts as challenges to their pleasure, and control (not health) | ||
| No evaluation | |||
| Malena-Chan R. A narrative model for exploring climate change engagement among young community leaders. Health Promot Chronic Dis Prev Can. 2019; 39(4): 157–166 | Community leaders, Saskatchewan, Canada (age 20–40 years) | ST/sharing helped articulate difficult emotions about climate change and elicits feelings of solidarity. Stumbling blocks were identified e.g. nuanced experiences of agency, responsibility, capacity, and activation, e.g., “I see climate news… and I tell myself “I can’t afford to look at this right now” …avoidance is part self-care but also part unhealthy willful ignorance … Ppts had difficulty identifying the meaning of actions e.g., minimizing emissions or environmentally-friendly food choice in context of hugeness of climate change problem. Stages towards action in narratives identified (1) moving from knowledge of the challenge to a sense of agency about it; (2) from agency to a sense of responsibility to choose to address it; (3) from responsibility to a sense of capacity to produce desirable outcomes despite contextual challenges; and (4) from capacity to a moral sense of activation in context | ST seeks to inform a more compelling story around climate change to present to policymakers. ST identified opportunities for transforming knowledge into emotions that mobilize collective action. ST highlights information deficit approach to climate change engagement may not translate into effective action. Authors suggest ST could be a mechanism for bringing emotions around climate change to the surface and managing feelings of helplessness in face of the huge challenge of climate change |
| To capture contextual and cultural barriers to everyday actions in response to climate change in Saskatchewan, Canada. Effectively develops a model to help bridge the gap between knowledge and action, and to inform a framework to overcome barriers to engagement Extracted info and intervention | |||
| Not evaluated | |||
| Rand JR. Inuit women’s stories of strength: informing Inuit community-based HIV and STI prevention and sexual health promotion programming. Int J Circumpolar Health 2016; 75:32135 | Inuit women and families in Canadian Arctic with high prevalence STIs and HIV | ST revealed the right agent/s for any particular community is important: e.g., in the Innuit community, led by elders, HIV/STIs present a relatively new issue so elders cannot advise. ST highlights less overt aspects of daily life e.g., women consider alcohol instrumental in negative sexual health outcomes and should be incorporated into health programs. ST helps identify hard-to-reach groups e.g., youth out of school. ST links the epidemiology with daily lives. | Here, ST highlights the importance of localizing the research e.g. community-based participatory research (CBPR) design; primary researcher was 15 years local resident so familiar with culture, facilitating interpretation of stories (esoteric nature so difficult for an outsider to understand fully). Used Two-eyed seeing theoretical framework (Inuit concept – incorporates multiple world views) |
| To source/extract information and perceptions of Inuit women and families on determinants of sexual health and HIV. No change intervention | |||
| Aims to inform relevant programming and policy | |||
| Extracted inf | |||
| Not evaluated | |||
| Treffry-Goatley A, Sykes P, et al. Understanding Specific Contexts of Antiretroviral Therapy Adherence in Rural South Africa: A Thematic Analysis of Digital Stories from a Community with High HIV Prevalence. PLoS One. 2016; 11(2): e0148801. Published 2016 Feb 29 | HIV/AIDS Black, Zulu-speaking, poverty-stricken, patients in resource-limited settings in sub-Saharan Africa | 20 digital stories produced via written word and art (drawings and photos). Major themes emerged: the way it used to be, change, family, intimate relationships. Through metaphor, ST provides insight into how culture and history impact meaning e.g. Apartheid and armed struggle - Black resistance seen with Apartheid, referenced in the context of ART, HIV too can be overcome. ART considered as weaponry (common in S. Africa) to protect against HIV. ST revealed issues around fear, stigma, disclosure, side-effects and how adherence intersects with the everyday. ST revealed importance of social support (emotional, financial from family). ST shows reluctance to disclose. ST and stigma: A mother refused to take her pills due discrimination from her children. Some plurality with traditional healers vs. Western medicine | ST unveils multiple layers of influences on adherence KAB/Ps. References that underpin the making of meaning around issues related to adherence to ART - there’s clear evidence of cultural references within this study e.g., weaponry and Apartheid. ST revealed that stigma, disclosure, and traditional healing, were all shown to influence adherence behavior, effectively attesting to the complexity of ART adherence |
| To overcome challenges of adherence of antiretroviral therapy (ART) among To use DST to understand specific individual and structural drivers/contexts of adherence to ART. To use CBPR. To thematically analyze stories to identify barriers and facilitators to adherence | Used voices of those affected by events rather than experts (CBPR) | ||
| Extracted info only | Study showed a leaning towards social desirability in ST e.g., avoidance of reference to faith healers because facilitators Western (risk if non-locals run the ST workshops) | ||
| Not evaluated | |||
| Zeelen, J, et al.(2010), “Beyond silence and rumor: Storytelling as an educational tool to reduce the stigma around HIV/AIDS in South Africa”, Health Education, Vol. 110 No. 5, pp. 382–398 | Local (Limpopo) communities rural South Africa, high poverty, local dialects, pregnant women attending ante-natal clinics (HIV prevalence 20.7%) | ST on sensitive topics more productive if proxy characters e.g., animals of the region, used to create a sense of removal and encourage openness, overcoming difficulties addressing gender inequality which is a key reason for HIV infection rates increasing. ST revealed coexistence of different belief systems e.g., traditional healers and Western medicine | ST shown as accessible, transparent and contextualized research tool/intervention for local rural communities. Bringing ST to the waiting room/to the target community can be effective. ST as means of access target groups. ST as ‘edutainment’: education enriched with entertainment overcomes access to people frustrated with conventional education. Easy to relate to animal characters as proxy -, overcomes inhibitions of sensitive topic. Value of local ST practitioner for local language, knowledge, social norms (prevalent myths on stigma etc.) e.g., hospital beds spread HIV, also helps to overcome an information deficit model and internalizing of messages |
| To use ST as a tool for informal education in 5 health clinics to tackle HIV stigma. To create a conversational space to elicit personal and localized stories about HIV, and ease stigma. To use professional storyteller from the local museum to tell stories Followed by interviews with some audience members, HCPs at clinics to draw on the dialogue stimulated by the ST and elicit personal stories | |||
| Extracted info only | |||
| Evaluated | |||
| Leukefeld C, et al., HIV prevention among high-risk and hard-to-reach rural residents. J Psychoactive Drugs. 2003; 35(4): 427–434 | Probationers with HIV and drug abuse problems in rural Kentucky, US (perception of low risk in rural vs. urban environment) | ST led to self-exploring, personal insights into behavior that sometimes resonate with others | ST is about cause and effect. The ST process in this study created structure via thought mapping helping ppts to link cause and consequence. ST related facts and events around HIV risk (sex and drugs). to the rural context |
| To use ST intervention called Enhanced Probation Focused Intervention based on transtheoretical model of behavior change with personalized strategies to change thinking around drug use and sexual KAB/P and HIB risk. Compare standard vs. Enhanced version of intervention (tailored to rural issues) | Mutual ST precipitated sense of solidarity and strength | ||
| Ppts reported high illicit drug use and risky sexual behavior (via ST processes). Ppts reported limited KABs on HIV and hepatitis risks | ST draws on power of imagination - ppts tried out stories with different endings i.e., more positive ones offering hope for change | ||
| Extracted info and intervention | Limited to preliminary findings of comparison NIDA (standard government) and Enhanced program | ||
| Ppts connected actions lead to consequences via ST | ST helped ppts understand how to connect cause and effect. ST enabled ppts use own words to develop possible strategies to overcome challenges. ST is used to access high risk individuals in rural setting and obtain information on prevalence and behaviors around HIV risk. Targeting ST at prisoners means results localized to that group (cannot generalize) – but target groups seem to lend to ST | ||
| Not evaluated | (6-month evaluation on effect on ST workshops on ppts was planned but not reported here) | ||
| Dickinson D. Myths, science and stories: working with peer educators to counter HIV/AIDS myths. Afr J AIDS Res. 2011; 10 Suppl 1: 335–344 | Workplace peer educators in a mining village in South Africa. To use ST to overcome stigma, misunderstandings, and myths around HIV/AIDs and as an alternative to repeating factual, scientific messages (information deficit). ST aimed to explore motivations and unearth ingrained misunderstandings that perpetuate stigma and misinformed myths in the area | Recorded 80 HIV/AIDS myths and used them as content to develop 16 stories via 6 workshops. ST identified incorrect information in the myths e.g., and attempted to clarify. Workshops where myth was recounted, a story created and told to counter the myth. Stories often created characters e.g. The Shepherd and behavior around HIV risks was conveyed in metaphorical terms e.g. the shepherd takes a shortcut across the rive – take a quick fix from a faith healer rather than the longer route of seeking out ART. Stories developed illustrated 4 maxims e.g. appearances can be deceptive, or small problems become large ones if ignored. Interviews with 23/28 peer educators on the ST process and effects found some peer educators enjoyed conceiving and telling stories; others clearly found the idea of telling stories daunting and unattractive | ST revealed sources of stigma and misunderstanding around HIV/AIDs in the local area. ST uses the power of real, lived experience to counter HIV/AIDS myths, and the stories created resonate with ppts’ lives. ST can be propagated via word of mouth in the same way that myths circulate |
| Interviews on impact of ST afterwards | |||
| Extracted info and intervention | ST impact best where similarity between message source and recipient; breaks down barriers. ST more enjoyable than an information deficit type of delivery. Study revealed that sometimes ST might be optimal tool instead of, or alongside other forms of information delivery. ST is effective way of communicating for some but not all people. Messages via ST arguably greater purchase than scientific explanations in this group. Peer educators, using ST, seen as agents of change | ||
| Evaluated |
Key: ST, storytelling; ppt, participant.