Impact on community of previous research results not being shared
During the initial phase of fieldwork among the Indigenous communities, one of the key barriers to building rapport was the negative experience of the community with previous research studies. Several research groups had carried out data collection with the community, but hardly anyone returned to share their findings with them. The lack of engagement by researchers, post data collection, made community members feel that researchers were far more interested in getting their work done rather than helping the community address their situation. Some even wondered if the researcher accurately reported the information that they had provided.
Health system participants (especially doctors) were also keen to point out the benefits of disseminating the results and the limitations of not doing so. Many felt that if research aims to impact the local health system where it was carried out, then it is important for researchers to share their findings with key stakeholders both at the implementation level and at the policy level. This they felt would help to improve their practice by understanding what promotes access to better health and healthcare for the community. According to the health system participants, results published in scientific journals and other professional avenues were hardly accessible to practitioners in the field as most of them especially in developing country settings did not have the resources or the time to make regular use of many journals.
The failure of researchers to come back and share findings gave participants the impression that researchers were only concerned about their professional careers, rather than empowering the community through their research. The community felt that this was unfair as they had spent time and shared information about their lives with researchers. Such experiences also meant that communities were not eager to participate in future research as they considered such exercises futile.
People like you come here for research, but once they finish their work, there is no sign of them. They don’t tell us what they have found out and neither do we know what has happened to the report that they wrote. Once they have collected whatever they want no one ever comes back.
Indigenous Community FGD, TI10
I don’t think so far anyone has come and spoken about their findings here. Usually what happens is that people will do some surveys or carry out interviews. But once that is over, they do not come back. We won’t even know where they are or what happened to them after that.
Healthcare provider IDI, MO_4
As part of the initial process of building rapport with both groups of participants, we discussed this issue and entered into mutual agreements with participants that the results of our study would be shared once we had completed analysis of our data. These discussions enabled us to build more equal relationships with participants and to some extent address any power disparities that might have existed between participants and researchers.
Inaccessible research outputs
Peer-reviewed publications, technical reports and policy briefs are some of the traditional avenues through which research results are disseminated. However, for most research participants, especially in the developing world, access to such outputs is highly limited even for medical professionals. Furthermore, most of the traditional avenues established to disseminate research results cater primarily to the research community and other stakeholders such as funders, policy makers and other professionals associated with the subject being researched. etc. Research outputs are therefore tailored to suit such audiences. They are not easily accessible (either physically or intellectually) for other audiences and a different approach is therefore required. For example, marginalised groups have been reported to be eager to hear results, preferring material that is read out to them or uses pictures and other forms of visual or verbal dissemination (34). The community participants in our research were unable to read reports or summary documents which were produced by researchers. What evolved in our consultations was that a verbal presentation followed by a discussion of the results either in an individual or a group setting would be far more effective for our participants. Merely receiving a copy of a research report was not going to help them engage with the findings and understand what was being reported.
I don’t know what they are writing about us. I hope they are writing what we say (laughs). But what can we do about it? We can’t read what they write, and they also don’t tell us what they finally write in those reports.
Indigenous community FGD, TK12
Engaging communities with results
Once data analysis was completed, the key findings from our study were presented to all the research participants. As there were multiple categories of participants, we engaged in discussions with each group to identify what would be the best format to share the results of our study. This process enabled us to identify different formats for different categories of participants. For example, the Indigenous communities who participated in this study lived in a close-knit circle and had a community mechanism to discuss issues of common concern. Given our research focus, village chiefs felt the most appropriate forum for sharing the results would be their village meeting. In keeping with this tradition, in each village where data was collected the village chief called for a meeting where everyone from the village was present. Aggregate results were presented one by one and a discussion on each of these results was carried out in the village meeting that was presided over by the village chief.
With the widows, individual meetings were held to talk about the results on a one-to-one basis in their homes. This format suited them the most as each of our participants from this category lived by themselves. Gathering them together would have been counterproductive as it would have disrupted their daily routine and put them in the company of others they did not know well. This would have diminished their ability to engage with the results, ask questions and comment on them freely. With the healthcare providers such as doctors and community health workers, individual meetings were preferred over group settings.
While the aggregate results that we presented were the same for all stakeholders, it was important to ensure that the language and idioms used to describe the results, were accessible for the different participants. For example, given that we were looking at the issue of access to healthcare, it was natural for us to prepare out reports using terms that are readily understood by those with a background in health. However, this would have meant that participants from the community would have found it difficult to engage with our results actively. In order to ensure that this did not happen, discussions were held with some of the Indigenous participants to explore what would be the best form in which to present our results. These discussions helped us to understand that while presenting results it would be useful to use imagery and context that was relevant to the community instead of presenting generic results. For example, having village chiefs convene the village meeting (oor kootam) and preside when results were disseminated drove home the importance of the discussion and improved participant engagement. Secondly while discussing results, imagery and analogies that resonated with their situation and that were drawn from their lives increased the salience of the conversation for participants. For example, while discussing the gradual decline of Indigenous healing traditions and the increasing acceptance of western medicine, parallels were drawn to how the official language of the state (Malayalam) had taken over tribal dialects, resulting in tribal terms being replaced with Malayalam words. Thus, the Indigenous word for mother ‘avva’ was replaced by the Malayalam word ‘amma’. Using this imagery resonated with the community and led to discussions about how the neglect of healing traditions should be seen within the overall context of Indigenous ways (including language) not being valued by society. With the community of widows, before presenting results to all participants, feedback was sought from two participants to ensure that the language being used to describe findings could be understood.
With all participants, the results were used to stimulate discussion around the larger issue of access to healthcare and what it meant for them. This was done to ensure that the process of sharing of results was not monopolised by the researcher, but participants were able to discuss the significance of our results to their lives and how they could use it to address some of the gaps in their access to healthcare, the barriers that they face and how they might be addressed. This form of active engagement enriched the research in two specific ways. Firstly, it confirmed that our results captured the lived reality of the participants. Secondly, it also enabled us to jointly evolve recommendations to address the issues that had been identified.
For example, one of our findings was about the importance of decentralising the delivery of healthcare services. During our discussions, some of the widows pointed out that there was a specific aspect of decentralisation that would help them the most. Participants explained that while the neighbourhood clinics had made a difference to their ability to access healthcare services, they still had to travel great distances for diagnostics. This engagement enabled us to evolve a specific recommendation about decentralisation that was relevant to the community.
Another example was the discussions with medical officers working among the Indigenous communities. Some of them pointed out how decentralisation had several components and could be operationalised in multiple forms. As they were more aware of the prevailing policy context, they suggested that tailoring the suggestions related to policy and practice to the local policy context would give a greater chance for policy makers to act on them. Thus, among the list of suggestions we had prepared, two of the medical officers pointed out that appointing young tribal women as community health workers in the villages was not only effective to decentralise healthcare, but also more likely to be acted upon as it was in line with the thinking among policy. Such feedback helped us to tailor some of our recommendations to align with the local policy context when knowledge transfer engagements were undertaken with key policy makers.
Handling multiple viewpoints and unfavourable results
Research results often have findings that are not favourable to all stakeholders who participated. Furthermore, as research findings report multiple participant viewpoints, some stakeholders may find the dominant themes to emerge from a study are not representative of their own views. It is critical that researchers acknowledge this during knowledge transfer and also prepare to engage with participants who might feel that their views have not been adequately represented, or that views contrary to their own have been highlighted. Our study had observations about how healthcare services were planned and delivered which made it difficult for communities to access healthcare. For example, in the case of the Indigenous communities, the centralisation of healthcare was a decision that was taken by officials in the local health system in order to ensure that most of the services were provided in a secondary care hospital under the supervision of specialist doctors. However, this had the impact of excluding many of the villages who lived far away from this particular hospital. With the widows, the issue of physical infrastructure that was not elderly-friendly was pointed out by some of our participants as being a deterrent to visit the public healthcare facilities even when they required care. We had anticipated that some of the health system participants, particularly those in charge of the local health system might be unhappy with findings that appeared critical of their service provision. We addressed this by ensuring that the language we used while describing our results did not suggest that any specific individual or institution was primarily responsible for any negative findings. For example, while discussing the issue of centralisation we allowed those who disagreed with the finding, particularly from the health service, to present their side of the story. Secondly, we were careful to communicate to all participants that our aggregated findings were meant to identify systemic issues and did not apply to one particular individual or institution.
The group discussion format that was employed to engage Indigenous participants enabled greater engagement and discussion among all those present. However, it also posed some unique challenges. For example, in one of the early village meetings, a community member objected to some of the findings that he felt portrayed the local health system in a poor light. We prepared for this by clearly communicating at the beginning of each meeting that it was fine to disagree with the results that were being shared and that everyone present had a right to discuss the results and comment on them.