Ethical Issues in Photovoice Studies involving Key Populations: A Scoping Review

Ethical considerations are frequently discussed in the literature on photovoice projects, particularly because these projects often focus on marginalized populations whose rights are frequently overlooked and undervalued (Wang and Redwood-Jones 2001). Upholding ethical standards is crucial in order to prevent the exploitation of these populations.

In our review of 25 papers, which focused specifically on marginalized populations such as drug users, gender identity patients, people living with HIV (PLWH), patients living with HIV, and sex workers, we have identified and categorized ethical concerns and challenges into six main groups: Informed Consent, Participant Safety and Disclosure, Privacy and Confidentiality, Misrepresentation, Power Dynamics, and Compensation. Additionally, some papers offer suggestions to address and overcome these ethical problems, which are grouped accordingly within each respective category.

In our review of 25 papers, the most prevalent ethical concern was obtaining informed consent. It is important to ensure that participants have a comprehensive understanding of their rights and the project before providing their consent. However, obtaining consent can be more complex in certain circumstances, such as when it involves minors, illiterate individuals, or those without legal guardians. For instance, Kimera et al. (2020) conducted a photovoice project involving participants aged 15–19. In addition to obtaining consent from the participants themselves, they also obtained informed consent from the caretakers or parents of the minors. Similarly, Lofton et al. (2020), who conducted a photovoice project with 24 youths, required participants to have their parents review the consent forms before providing their own consent. Special consideration was given to individuals with cognitive disabilities in obtaining consent, as highlighted by Jacobs and Harley (2014). They emphasized the importance of providing accessible information and ensuring understanding for this particular group. Whereas, Umurungi et al.'s photovoice project (2014) encountered difficulties in obtaining written consent from girls without parents or legal caregivers. As a resolution, the researchers obtained consent from the Centre administrator after informing the girls about their rights. Nonetheless, due to illiteracy, some participants could not provide written consent. Overall, the process of obtaining informed consent requires careful attention and tailored approaches to address the specific needs and circumstances of the participants involved.

Participant Safety and Disclosure is of utmost importance in photovoice projects, as it entails protecting participants from stigma, re-traumatization, and potential harm while empowering them to maintain control over their images and stories. For example, a study implemented restrictions on photographing illicit activities or unsafe spaces (Salerno Valdez et al. 2019), Another study by Teti et al. (2012, 2018) provided guidance on appropriate photography to avoid capturing illegal activities, and Kennedy et al. (2016) prohibited the exhibition of photographs involving minors or illegal activities. Additionally, Lofton et al. (2020) prioritized emotional support by including a psychiatric nurse in their team to ensure participant well-being.

Privacy and Confidentiality emerges as significant ethical concerns in our review, following Informed Consent. Protecting participants' privacy was crucial to ensure their safety, as mentioned by Smith et al. (2023) who taught participants about confidentiality when photographing others. Measures such as conducting interviews in enclosed spaces, as done by Drainoni et al. (2019), and opting for individual dialogue sessions instead of group settings, as practiced by Desyllas (2013), further safeguarded privacy. Forge et al. (2018) guided participants on securely uploading photographs to a dedicated email account, while Christensen et al. (2020) emphasized shared ownership of data with participants. However, few papers addressed privacy during data collection and dissemination, as seen in Lennon-Dearing and Hirschi (2019) where confidentiality measures during photo display were unclear. To protect the confidentiality, pseudonyms were used in recordings, analysis, reporting, and public exhibitions, and identifiable features were blurred, as demonstrated by some studies (Daniels et al. 2017; Kimera et al. 2020). Additionally, respecting the privacy of those being photographed, not just the participants, was highlighted by Jacobs and Harley (2014), urging researchers to avoid assumptions about personal space or belongings in marginalized communities, even in impoverished contexts.

Misrepresentation was a notable concern addressed in the studies, particularly in relation to the sampling method used to recruit participants. There was a study that recruited their participants solely through case managers at local HIV service organizations, which may have introduced a potential source of bias and misrepresentation (Lennon-Dearing and Hirschi 2019). Desyllas (2013) also highlighted the importance of employing multiple recruitment methods to mitigate this issue. To address misrepresentation, Salerno Valdez et al. (2019) conducted member-checking activities to validate findings and ensure an accurate representation of the youth researchers' perspectives. Jacobs and Harley (2014) emphasized the involvement of participants in the photography selection process as another means to prevent misrepresentation.

Moreover, Power Dynamics was also a significant ethical concern in photovoice projects, particularly due to the involvement of marginalized populations and the potential for researchers to hold a position of perceived superiority. To address this, strategies were implemented, such as involving participants in the research process to ensure their equal participation and decision-making, as advocated by Christensen et al. (2020) and Barlow and Hurlock (2013). Teti et al. (2012, 2018) highlighted the risk of researchers exerting excessive control and undervaluing participant input for personal gain, while also acknowledging the influence of power differentials based on race/ethnicity, socioeconomic status, and HIV status. Maintaining transparency about the researchers' roles in data collection and analysis, as demonstrated by Kennedy et al. (2016) and their team, aimed to mitigate power imbalances.

Compensation for participants was discussed in multiple studies, acknowledging the importance of valuing their time and contributions. It was emphasized to strike an appropriate balance in compensation, ensuring it was not perceived as a transactional exchange, but rather as a gesture of appreciation for their involvement. Monetary compensation was provided in studies by Forge et al. (2018), Hergenrather et al. (2006), Barlow and Hurlock (2013), and Desyllas (2013). Lennon-Dearing and Hirschi (2019) went beyond monetary compensation by offering additional benefits such as digital cameras, photo copies, transportation vouchers, and grocery gift cards to acknowledge participants' efforts during sessions and exhibits.

The strength of this paper lies in its rigorous review process involving two independent reviewers, which effectively minimizes biases. Furthermore, it is among the pioneering papers investigating the ethical considerations surrounding photovoice. Additionally, the paper employs a robust scoping review methodology, ensuring a comprehensive synthesis of existing literature by incorporating all relevant sources. It is worth noting that the paper includes a summary of findings derived from the existing literature, offering valuable insights and recommendations for future photovoice studies.

One potential weakness of this paper is that the search terms used may not have been exhaustive, which could have resulted in the researchers overlooking potentially relevant articles. Additionally, the inclusion of only English databases might introduce bias by excluding relevant studies published in other languages. Furthermore, the exclusion of grey literature may limit the comprehensiveness of the review. Moreover, the paper's narrow focus on photovoice research projects involving marginalized communities and key populations might restrict the generalizability of the findings to other types of research projects or different populations.

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