Our method produced seven illustrations, each depicting one of the rights in the patient charter. Despite our concerns about the feasibility of illustrating largely abstract rights, participants in both groups were able to describe their rights visually. Our reflections on our method relate to: 1) our technique for eliciting feedback on the charter verbatim versus a broader discussion of concepts referenced within each right, 2) our decision to include both men and women in the same focus group, 3) our decision to ask focus group participants to describe specific features of each illustration and how this benefited the inclusivity of our illustrations, and 4) the potential of the focus groups to act as a means to introduce the charter to communities. The focus group discussions did not reveal any rights that were not included in our charter.
Both focus groups elicited rich discussion about the contents of the charter. However, the most evocative content was garnered, not from discussion of the rights themselves, but from structured discussions of participants’ experience and understanding of some of the concepts contained in the charter. Examples of how ‘dignity’ and ‘equality’ manifest, or not, in a health care setting were particularly useful. For example, discussion of experiences in healthcare settings in which dignity was compromised provided a helpful starting point for describing how to illustrate dignified care. On reflection, discussing rights more generally, and asking participants to provide examples from their own experiences, may have been a better starting point than reading out each right.
Focus group composition
Owing to limited time and a narrow window of opportunity we could only carry out two focus groups. As the Rohingya and host community were accessible at different locations we opted to carry out one focus group with the Rohingya, and one with the host community. This meant that both groups included men and women. The facilitator was able to elicit feedback, through regular prompting, from both men and women (who were less forthcoming than the men in the Rohingya group, and who were being actively discouraged from contributing by the men in the host community group); however, a less experienced facilitator may have struggled to engage the women equally in the discussion.
A focus on details
Differences in clothing between the Rohingya and host community were emphasised during both focus groups as participants were eager to ensure that their respective communities were represented in the illustrations. Participants were also forthcoming about how health care workers should be dressed, where they should be standing, and various nuances relating to comportment (e.g. Rohingya infrequently ‘point’, rather they draw attention to people or objects using an open hand). Though communicating this information took time, and resulted in lengthy fieldnotes, this information was critical in ensuring that the illustrations were culturally appropriate. The issue of stature was discussed repeatedly, and the Rohingya in particular requested that Rohingya people depicted in the illustrations not be positioned ‘lower’ than health care workers. Thus, we were mindful of relative height in our illustrations. Though this information did not always appear to relate directly to the rights we were attempting to depict, it was important to participants in both communities and, in retrospect, was critical in ensuring the localisation of the rights included in the charter.
The value in the process
Participants in the host community expressed surprise that they had rights as patients in a health care setting. The focus groups were, inadvertently, a good opportunity to discuss these rights and to answer any questions participants had about how we developed the charter, to whom the rights applied, etc. The focus groups themselves had value, not only in terms of enabling graphic elicitation, but also in allowing us to introduce the patient charter to community groups. In a context in which much information is spread via word of mouth the process maybe an effective means to increase the awareness of, and dialogue around, patient rights.
Our method was difficult to execute as we intended. Despite our desire to establish how accurately the sketches represented what participants were trying to convey, we were unable to reconvene the original focus groups, nor were we able to carry out the back translation of the images (to determine if community members could tell us what was being depicted in the illustrations without referring to the rights as written). Operationalising even the most basic activities in an emergency is logistically complicated; however, in this setting routine operational challenges were compounded by the nature of the emergency (and the associated infection prevention and control measures) and the standard restrictions on camp access (e.g. access hours were limited for international staff). These factors, in addition to competing demands and time constraints, prevented us from determining if the illustrataions faithfully depicted the visual elements described to us, and from carrying out the back-translation as originally planned.
Despite early outbreak modelling predictions there have been few laboratory confirmed cases of COVID-19 within the catchment of our SARI ITC, and amongst the Rohingya population more broadly . We have thus been unable to measure the impact of our patient charter (e.g. in terms of its effect on access to services, patient satisfaction, and/or patient safety; or on patients’ ability to recall the components of the charter or their views of adherence to charter by medical personnel) and the accompanying illustrations amongst our patients. Ideally, we would have been able to establish the acceptability and accessibility of the materials (e.g. though patient exit interviews), and to make further changes to the materials based on patient feedback.
Finally, we were unable to identify people living with disabilities for inclusion in our focus groups, nor did we include children or adolescents.