Evidence-Based Participatory Research Approaches for Last Mile Adolescent Girls and Young Women: A Reflection on the Study Methods

Introduction

There is a growing recognition for the need to engage adolescent girls and young women (AGYW) (aged 10- 24 years) in any research and/ or intervention planning which address their needs. ¹ Their involvement ensures that the research and/or interventions are appropriate, acceptable and respond to the AGYW’s needs (Cambaco et al., 2024; Chidwick et al., 2022; Freire et al., 2022; Hawke et al., 2020; Szymuś et al., 2024; Villa-Torres & Svanemyr, 2015; Warraitch et al., 2023; Yonas et al., 2013). Furthermore, according to community-engaged research, engagement can be a useful tool for empowering AGYW to take leadership and agency over their lives (Freire et al., 2022; Hawke et al., 2020; Israel et al., 2010; Villa-Torres & Svanemyr, 2015; Warraitch et al., 2023). Community engaged research is aligned with the broader global push for the inclusion of beneficiaries or “end-users” since this approach allows these populations to take greater ownership of what is implemented in their communities rather than simply receiving prescribed services or interventions (Adams et al., 2014, 2019; Burgess, 2022; Freire et al., 2022; Khosla & Venkatapuram, 2023; Villa-Torres & Svanemyr, 2015; World Health Organization, 2015)). Meaningful inclusion of these populations in all the stages of implementation research including in the study design, data collection, monitoring and evaluation becomes increasingly important when we consider the need for innovative and sustainable solutions for challenges faced by “last mile” populations (Freire et al., 2022; Warraitch et al., 2023). We define last mile populations as those who, by virtue of their remote geographical location, social, economic or legal status, lack access to the available social, economic, and cultural interventions (Nowshin et al., 2022; UN Sustainable Development Group, 2022).

While AGYW have been identified as a last mile population in the Sustainable Development Goals (SDGs), AGYW living in low-income countries and especially those who work in the informal sector, are arguably even more marginalized (Chidwick et al., 2023; Davison et al., 2021). Their marginalization stems from an intersection of cultural, social and economic factors (Davison et al., 2021; Nowshin et al., 2022). In many cultures, adolescents, and especially females, are treated as children who do not participate in decision making – even when the decisions directly impact them (Szymuś et al., 2024; Warraitch et al., 2023). Furthermore, many AGYW are socially and economically dependent which further makes it difficult for them to participate in decision making (Szymuś et al., 2024; Warraitch et al., 2023). Global health research principles and research ethics requires that research conducted in such contexts seeks to address these inequities and does not further marginalise these populations.

Since both working in the artisanal and small-scale mining (ASM) and child labor are illegal in most societies, it is often the most marginalized AGYW who tend to work in ASM and their work is are often undocumented (Buss et al., 2017; Hilson, 2009; Hilson & Osei, 2014). Hence, in spite of the health challenges faced by the AGYW working in ASM (e.g. high rates of sexually transmitted diseases, skin irritations, poor access to safe water and sanitation), they have limited access to healthcare (including sexual and reproductive health (SRH) care) and other social services. This is because many ASM communities are often remote, hard to reach, and hence lack basic infrastructure for health and well-being, and are less attractive for research (Pedrajas & Choritz, 2016; Himmelsbach et al., 2023; D’Souza et al., 2013). Furthermore, because the AGYW’s ASM work is often deemed illegal, the policies and programs that would protect and support this population are either unavailable or inaccessible (Osei et al., 2021). Involving AGYW in the process of documenting and addressing their health and economic needs is a critical first step in ensuring that they are not left behind on the path to achieving the 2030 SDGs (UN Sustainable Development Group, 2022).

The marginalization of ASM- AGYW because of their age, limited education, illegal work status, and social status , has, in part, led to their consistent exclusion from meaningful participation in research studies and in the designing of community interventions (Warraitch et al., 2023). Such exclusion further disempowers and marginalizes the AGYW- making them passive recipients as opposed to active agents in the intervention programs. This is contrary to the principles of community-based research (CBR) (Szymuś et al., 2024; Freire et al., 2022; WHO, 2015; Elder & Odoyo, 2018). Various participatory methods such as photo voice, visual voices, etc have been used to engage adolescents and young adults with varying impact (Yonas et al., 2013; Ozer et al., 2010; Murray & Xie, 2024) . However, there remains a gap in the literature with regards to the appropriate participatory approach (es) to use when engaging the most marginalized AGYW, with limited education and research knowledge in research and in the systematic prioritization of intervention options.

This paper provides a synthesis of participatory research methods used in a study among AGYW working in selected ASM communities in Uganda and Ghana. The overall goal is to discuss and reflect on the approaches used, the lessons learned, the challenges and implications for future research.

Ethical Considerations

The study was approved by the research ethics committees in three countries – Uganda (The AIDS Support Organization-2022-169 and registered by the Uganda National Council for Science and Technology, UNCST – SS149ES); Ghana, (University of Ghana Ethics Committee for the Humanities (ECH109/22-23)); and, Canada (McMaster University Research Ethics Board, MREB #6257).

Individual verbal informed consent was obtained from each participant prior to administering the survey and conducting the in-depth interviews. This involved explaining the study objectives and procedures to each respondent. Respondents below 18 years were interviewed with their assent after obtaining consent from their caregivers.

Consent for the focus group discussions involved explaining the risks to confidentiality. The participants were informed that the researchers would keep participants’ information confidential. All participants were also advised to keep what was discussed during the group discussion confidential and not to discuss it beyond the meeting. However, participants were cautioned to keep in mind that the researchers could not guarantee that each participant would observe confidentiality.

Study Overview

This paper discusses the methods employed in a study that aimed to describe and analyze the economic and health resilience of last-mile AGYW living in ASM communities in Ghana and Uganda. The study also sought to understand the coping mechanisms used by the AGYW during the COVID-19 pandemic in order to strengthen their resilience and ability to cope with future crises.

Data collection was led by experienced principle investigators in each country with expertise in conducting similar research, using similar methods within each the research context.

The study used mixed methods involving (i) desk review (to identify interventions that have been effectively implemented in ASM), (ii) quantitative survey (to gather the health and economic experiences of AGYW from a representative sample), (iii) key informant interviews (to contextualize the AGYW experiences), (iv) focus group discussions (to explain the survey findings) and (v) nominal group discussions to prioritize the interventions (see Figure 1). The methods were participatory and supported the strengthening of the AGYW’s research and decision making capacities. The AGYW’s participation and the use of evidence ensured that the findings reflected both the perspectives of the AGYW as well as the evidence based best practices on intervention prioritization and implementation.

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Figure 1.

Summary of the study methods

A main focus of this project was to train, equip and enable (empower) the AGYW to identify, prioritize, advocate for and participate in the development of the interventions that support their well-being. Hence, they were involved throughout the research process. The approaches also ensured buy-in and support from the community leaders and policy-makers. We combined scientific rigor and consensus building strategies to achieve these goals.

The study was implemented in three overlapping phases. The first phase involved building a common understanding with the community and stakeholders; the second phase focused on participatory data collection and analysis; the third phase involved sharing of the study findings and intervention prioritization. We provide the details of the methods employed in each phase.

Methods

Results and Discussion

We have provided a detailed description of the methods through which last mile ASM-AGYW populations were empowered to identify and to share and advocate for the health and economic priority interventions to strengthen their resilience. To the best of our knowledge, this is among the first detailed documentation of the process through which researchers can train, equip and enable (empower) marginalized populations to meaningfully engage in research and advocacy work. In the subsequent sections we discuss the lessons learned, the related challenges, and recommendations.

During the first phase, the AGYW, the community, district and national level stakeholders were sensitized about the research. The AGYWs were trained and then involved in data collection. This was because the study team was committed to credible scientific research methods and to empowering the AGYW. This process led to credible research findings which benefited the research community, as well as the participating ASM communities, especially the AGYW. Similar benefits have been documented in the literature where traditionally marginalized populations, youths and indigenous youths were trained and enabled to participate in the research process (Yonas et al., 2013; Lofton et al., 2020; Liebenberg et al., 2017; Swanson & Leader, 2023; McCracken, 2020).

The training implemented throughout the project empowered the AGYW to understand the key research methods concepts and related considerations. They were also empowered to organize themselves and to advocate for their priorities. For example, after their initial training and participating in data collection, the AGYW formed financial savings groups- which were self-organized and self-managed. They also started to sensitize other AGYW, within their communities, about SRH issues and the available community resources. The trained AGYW were also enabled to confidently articulate their priorities and engage in a discussion with policy makers (discussed below). Existing literature has similarly discussed how participatory community engaged research approaches reinforce positive outcomes (Huang et al., 2024; Lofton et al., 2020; Murray & Xie, 2024). For example, a study in Malawi found that while HIV positive youths were empowered to share their HIV prevention plans, they also developed new skills and new partnerships (Lofton et al., 2020). Similarly, in addition to skilling indigenous youths and communities, another study reported that indigenous youths’ participation improved knowledge mobilization and uptake (Huang et al., 2024; Liebenberg et al., 2017).

The early and continuous engagement with stakeholders ensured that the findings were relevant to them. For example, when discussing the study tools with the national advisory committee, they recommended that we include several questions which were relevant to their various sectors. This increased their interest in the study findings. Meaningful stakeholder engagement throughout the project cycle also increased the participants’ and stakeholders’ sense of ownership of the research process and the outcomes (Freire et al., 2022; Villa-Torres & Svanemyr, 2015; WHO, 2015; Burgess, 2022; Khosla & Venkatapuram, 2023; Adams et al., 2019; Adams et al., 2014). This approach has been found to be especially useful when working with youths and young adults who are traditionally left out of the decision making processes (Freire et al., 2022; Villa-Torres & Svanemyr, 2015).

During the second Phase, trained AGYW were involved in data collection and in validating the study findings. This was an additional step in their affirmation (McCracken, 2020; Warraitch et al., 2023). The validation process meant that all relevant stakeholders including the AGYW were appraised of the findings prior to further dissemination. Interestingly, the sharing of the findings at the various levels raised awareness about the plight of the AGYW which increased local stakeholders’ interest and ignited a discussion on potential strategies for alleviating the AGYW’s dire situation. Furthermore, by sharing the study findings, we were able to build community connections, which contributed to increasing their social capital, as documented in other studies (Chakraborty et al., 2020; Goopy & Kassan, 2019; Israel et al., 2010; Liebenberg et al., 2017). For example, a study in Malawi, showed that participatory methods supported the youths in building new partnerships which facilitated the implementation of their plans (Lofton et al., 2020). In our study, the inclusion of community leaders and policy makers was critical to fostering an enabling environment for the AGYW to initiate improvement strategies. This is consistent with other studies, which documented that policy makers’ involvement increased their support for the implementation and the sustainability of the interventions (Chakraborty et al., 2020; Lofton et al., 2020; Nykiforuk et al., 2011; Yonas et al., 2013).

During the third phase, the trained AGYW presented their priorities at the community and national stakeholders’ meetings and these priorities formed the basis for the meetings’ discussions. Having the AGYW present their priorities to the stakeholders boosted their confidence. It was also more impactful (compared to the usual knowledge translation approaches where researchers present the findings) since it forced the stakeholders to put faces to the problems experienced by this marginalized population. Hearing directly from the AGYW may have contributed to several stakeholders’ committing to addressing some of the identified challenges and supporting the interventions that were aligned with their sector’s mandate. While the literature has extensively discussed the benefits of empowering adolescents or the individuals throughout the research process, most of these studies end the engagement with the data interpretation (Ozer et al., 2010; Warraitch et al., 2023; Yonas et al., 2013). Our study contributes to this literature by engaging the AGYW beyond interpreting the data. The AGYW in our study also participated in knowledge translation activities and in the co-developing of the interventions, similar to the study with indigenous youth and youth in Malawi with HIV (Liebenberg et al., 2017; Lofton et al., 2020).

Furthermore, engaging the AGYW in this phase benefited the project. The AGYW identified some key issues that needed to be addressed in order for the prioritized interventions to succeed (i.e. increase uptake by the AGYW). For example, in Ghana AGYW identified mistrust and confidentiality as critical gaps in current health services which would negatively impact their participation in any health services based intervention. In order for SRH interventions involving the local health clinics to be effective, these concerns needed to be addressed. Consistent with our study, the literature discusses several benefits of participatory research involving youths. For example, in addition to improving the effectiveness of the intervention, the literature talks about the benefits of ensuring that the interventions are appropriate, respond to the youth’s felt needs and are supported by the youths etc. (Chidwick et al., 2022; Elder & Odoyo, 2018; Freire et al., 2022; Israel et al., 2010; Khalesi et al., 2020; Warraitch et al., 2023).

However, there were some challenges associated with the research process. While some of these challenges were associated with the methodology and are widely discussed in the literature (Warraitch et al., 2023; Cambaco et al., 2024; Freire et al., 2022) other challenges were associated with the study context and the study populations. First, the study population was a last-mile population (Chidwick et al., 2023; Davison et al., 2021; UN Sustainable Group, 2024), which meant that most of the participants (especially in Uganda) had limited experience with research. Second, the poverty levels and the compensation for participation raised ethical and practical concerns. When recruiters and participants perceive participation in research as an opportunity to earn some money, it is difficult to obtain informed consent and continued participation without the potential for coercion (by the compensation). Although one could remove compensation, this would have also raised ethical concerns since the funding for participants’ compensation was available (Klitzman, 2013; Tardieu et al., 2023). These challenges are not unique to this study, other studies conducted in similar contexts and with similar populations have also discussed the challenges of obtaining genuine informed consent (Freire et al., 2022; Tardieu et al., 2023). We resolved the recruitment challenge by following the ethics guidelines which recommend that investigators consistently remind the recruiters of the criteria and the shortfalls of biased recruitment. Furthermore, it was important that the team considered the research context when deciding on the level of compensation to ensure that it was not excessive. This was achieved through the team collaborating with the community advisory board (CAB). With the CAB’s advice, we were also able to ensure that the recruiters and the interviewers were not far removed from the AGYW’s age groups and context in order to mitigate power imbalances. Participants were assured that they could keep the money even if they chose to withdraw from the study (Klitzman, 2013).

Our presence as new people in the community raised some false expectations. For example, participants expected the research team to address all their needs which ranged from basic individual needs to building infrastructure e.g. schools and health facilities. This challenge has been discussed in the literature, for example in a community based research study in Boston, there were challenges associated with aligning research objectives and population expectations (which were inconsistent with the scope of the research) (Freeman et al., 2006). It would have been unethical if the researchers had simply told the communities that what their needs were beyond the scope of their research. While researchers may not have the resources to intervene they, through the evidence, can advocate for these communities. For example, in our study, by sharing the study findings with the relevant stakeholders at the national level, the ministry of health stakeholder planned to explicitly include this population on the list of the most vulnerable populations within the health policies. Although the tension between maintaining the researcher’s hat and advocacy has been discussed; the global health and research ethics literature supports the idea that research should not leave communities as they were or worse off than they were prior to the research, hence some level of advocacy may be inevitable for research involving marginalized populations (Canadian Coalition for Global Health Research, 2015).

Engaging the community and policy level stakeholders, in our study, ensured that some of the interventions that were beyond the scope of the research were taken up and addressed by these stakeholders – a spin-off of the integrated knowledge translation activities which we embedded in the study (Lawrence et al., 2019; Yonas et al., 2013). Many studies that use participatory approaches do not always amplify the voices of the last mile populations. In addition to amplifying the voices of the last mile ASM-AGYW, our study recognized the critical role of key stakeholders within the community and at the policy levels. The advisory committees at these levels will ensure that the interventions are considered beyond the life of the project.

Conclusions

This paper provided a detailed description of a participatory research process whose focus was on both research rigor and empowering the last mile AGYW. Subsequent publications will focus on the details of the research findings and impacts. The study highlighted the importance of persistently amplifying the voices of the most marginalized populations, while balancing this with broad relevant stakeholder engagement. Training is key to equipping vulnerable populations and can have benefits beyond the study. In addition to training, meaningful engagement should start at the project inception and throughout the project lifecycle.

This case study demonstrated that although the ASM- AGYW are marginalized and relatively under researched they can, with capacity strengthening, and appropriate participatory methods, meaningfully engage in research, program planning and implementation. The modified nominal group technique facilitated the use of evidence and the engagement the AGYW in a systematic prioritization process. While the process was time consuming, the resulting AGYW’s capacity strengthening and the meaningful stakeholder engagement resulted in identifying relevant interventions whose implementation will improve the health and well-being of this last mile population. Another challenge was managing the study populations’ expectations which were mitigated through open communications and sharing the findings with stakeholders who could address the ambitious priorities.

The renewed focus on the last mile populations such as the ASM-AGYW in the SDGs should emphasize their active involvement. Availing resources to support participatory approaches that strengthen the capacity of the last mile populations for meaningful engagement should be prioritized. This will ensure that the research and interventions’ prioritization and implementation are truly transformative for the ASM-AGYW and similar last mile populations.