Sage Journals: Discover world-class research

Abstract

There is increased interest in methods to achieve meaningful inclusion of traditionally marginalized and last mile populations in research. Adolescent girls and young women (AGYW) working in the artisanal small-scale mining (ASM) are an extremely marginalized group who, in addition to being excluded from decision making processes, tend to be excluded from research- even when the research is about them. There is a paucity of literature on the methods that can be used to meaningfully engage AGYW in ASM with limited education and knowledge in research. This paper provides a detailed description and reflection on a participatory, mixed-methods research process (involving a document review, survey, key informant interviews, focus group discussions and the nominal group technique) through which AGYW in ASM communities in Uganda and Ghana were involved to identify priority interventions to support their economic and health resilience. While the process, due to various challenges, took over 10 months to complete, it strengthened the AGYW’s capacity to meaningfully participate in the project and in decision making. Broad stakeholder engagement resulted in identifying relevant interventions whose implementation will improve the health and well-being of this last mile population. This paper highlights the contributions and challenges of using participatory research approaches among AGYW and other traditionally marginalized under researched populations to ensure that their voices are prioritized. Such participatory approaches are useful in ensuring that such last mile populations are not left behind on the path to achieving the 2030 Sustainable Development Goals.

Keywords

participatory research adolescent girls and young women artisanal mining

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.

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

Study Setting

The study was based in three ASM communities in Ghana (namely Bamboi, Banda Nkwanta (Savannah Region) and Chingakrom (Bono East Region)) and in Uganda (namely Namayingo (Eastern Region) and Kassanda (Central Region)). Most of the communities are remote, under-researched, with poor health infrastructure (most with only one or no hospital and poorly equipped primary care facilities), and limited access to safe water and proper sanitation (Ghana Health Service, 2024, Local Government - Republic of Uganda, 2024; Kassanda District Local, 2021). Hence the AGYW in these communities are indeed a last mile population (Nowshin et al., 2022; UN Sustainable Development Group, 2022).

Phase 1: Building a Common Understanding (Feb- April 2023)

Stakeholder Engagement

To ensure understanding, community buy-in and sustainability, the relevant stakeholders were engaged throughout the project. We identified and convened project advisory committees at the global, national and community levels. The committee members were deliberately selected to include gender, adolescent SRH, economic and mining experts. The global committee advised the research team on the appropriateness of the study instruments, and how to contextualize the findings within the global literature. The national advisory committee comprised of representatives from the Ministries of Gender, Labor and Social Development, Minerals and Health as relevant stakeholders within the respective countries. In addition to commenting on the appropriateness of the study instruments, this committee was engaged in contextualizing the study findings, identifying relevant policy interventions and advising the research team on the feasibility of the interventions that were identified by the AGYW. The community advisory committees comprised of the local government chair, the women’s and youth representative, the community development officer, the officers in charge of natural resource management, probation and welfare, finance and production, ASM representative. In addition to advising the team on the appropriateness of the study instruments, this committee sensitized the community about the research, supported the recruitment of study participants, data interpretation, and community level knowledge exchange and dissemination.

Iterative meetings with these committees throughout the project ensured that their contributions were considered in a timely manner throughout the study. For example, the comments that the committees provided (on the study approach and instruments) at the inception meeting were considered when finalizing the study instruments and in the subsequent phases.

Phase 2: Systematic Collecting and Synthesizing of Information

Desk Review (May-August 2023)

To ensure that the study was situated in the current literature and relevant policies, we conducted a review of government policies to assess if there were relevant policies that support ASM AGYW within each context; while through literature review we identified the best practices for promoting health and economic resilience amongst ASM- AGYW. Findings from this part of the study ensured that the overall findings were policy and evidence informed. Details of these analyses are provided elsewhere (Chidwick et al., 2023; Randolph-Koranteng et al., np).

Survey of a Sample of the AGYW (March- June 2023)

The ASM- AGYW survey was conducted by trained young female research assistants. The overall goal of the survey was to understand the economic and health experiences and resilience before, during, and after COVID-19, with a focus on, the AGYW’s work, gender roles and associated gender-based violence, SRH, and how the AGYW coped through the pandemic. The sample size was determined using Yamane’s formula for sample size determination (Yamane, 1973), taking into consideration the design effect of 2 and anticipated response rate of 98%. The estimated number of women in the ASM sector in Uganda and Ghana ranges from 40,000 to 50,000. N in this case is 40,000 (cognizant of the fact that some of the females are older): N = N/(1 + N*(0.0e)2) *2* 100/r. The sample size for each country was approximately 808 adolescent girls.

Seven to ten AGYW in each community were trained and participated in collecting the data - with support from trained research assistants. The AGYW were identified by the community leaders using the following criteria: residents of the ASM community, engaged in community activities-with leadership potential, current or prior ASM employees, relatively marginalized in the community. The one-week training was conducted by the lead investigators in each country and covered topics such as the research and its relevance, how to collect data using Kobo, ethics and confidentiality. The Kobo Collect tool that functions even in remote communities with limited internet connectivity was used to collect survey data. The training of the AGYW t data collectors contributed to their capacity building. The iPads used in data collection were donated to adolescent health corners in the project communities where the girls/young women will be prioritized in their use. In Ghana, the iPads were also used by the trained AGYW to take photos and collect stories within their communities, as part of a “photo voice” process.

Interviews (April- August 2023)

We conducted in-depth interviews with the community and policy leaders and focus group discussions with the AGYW in the ASM communities.

Interviews with the leaders

The trained research assistants interviewed 5 community leaders, 5 district officers for each location and 5 policy makers per country; along with 10 global key informants. The respondents provided their perspectives on the experiences of the AGYW, the programs and policies designed to strengthen the AGYW’s resilience and made recommendations for strengthening the AGYW’s resilience.

Interviews with the AGYW

Since the AGYW are traditionally marginalized, this study aimed to ensure that they are heard by amplifying their voices. We interviewed 10 AGYW per country, sampled for variation (including those that are pregnant, have children, or are married, older women in the sector) to understand their health and economic experiences.

Focus group discussions

Part of the study discussed sexuality related content, which is a sensitive topic within the study contexts. Hence, FGDs provided a safe space for deeper exploration of the sensitive topics that were raised in the survey. They also fostered mutual sharing of experiences and learning. We convened 8 FGDs (each with 8-12 participants) in each country. In addition to the AGYW groups, we also included one group with decision makers, one with young boys and one with older ASM women to provide their observations concerning the well-being of the AGYW.

Overall Synthesis (June-September 2023)

The quantitative data were analyzed using Stata statistical software version 15. Descriptive statistics and logistic regression analysis were conducted to identify the determinants of health and economic well-being of adolescent girls. This evidence informed the designing of prioritized interventions.

Qualitative interviews were transcribed verbatim, and where applicable, translated to English. Coding was facilitated by QSR Nvivo12 qualitative data analysis software (Kaefer et al., 2015). Data were inductively analyzed. First selected a sample of five interview transcripts which we read line-by-line and coded by two members of the study team. The codes were discussed and any discrepancies resolved by a third team member. These were organized into a code book which was used to code the rest of the interviews. Second, the agreed upon codes were grouped into categories, then into overarching themes and given a concept label, from either the literature or the data (Bowen, 2009; Hsieh & Shannon, 2005; Colorafi et al., 2016).

Since one of the purposes of the study was to identify priority interventions, the interventions identified from the different data sources were synthesized and listed according to the number of times they were mentioned. The study team identified 10-20 most commonly mentioned interventions which were used in the modified nominal group discussion process in phase 3.

Phase 3: Building a Common Understanding of the Findings and Identifying Priority Interventions (October- December 2023)

Building a Common Understanding of the Findings

All study findings were synthesized and summarized in various forms to ensure that they are accessible to different target audiences. We convened meetings with various key stakeholders involved in the study including the AGYW, members of the community, national, and international advisory committees. The meetings provided an opportunity for the participants to validate the study findings. The meetings also supported integrated knowledge translation, motivating some stakeholders to identify the different sectors which could address several aspects of the listed interventions.

The Modified Nominal Group Discussions and Consensus Building

One of the objectives of the study was to identify interventions to strengthen the AGYW’s health and economic resilience. Based on the literature about effective interventions and empowerment (Chidwick et al., 2023; UN Sustainable Development Group, 2022; Villa-Torres & Svanemyr, 2015; UN Sustainable Development )), it was important that the AGYW are engaged in prioritizing the interventions and that the interventions were evidence informed and feasible.

Therefore, the Nominal group technique (NGT) was modified to include two addition steps, one for identifying and agreeing on the prioritization criteria and the other for sharing evidence to support the prioritization process. Details of this process are described elsewhere (Forthcoming). Summarily, the process involved initial orientation and sharing of the study findings including the 10-20 interventions from the synthesized results. This was followed by evidence informed facilitated discussions which ensured that the AGYW were meaningfully engaged. The output of the prioritization process was an agreed upon list of 5 top priority interventions.

Engaging the Key Stakeholders in the Discussion of the Interventions

While the emphasis was on ensuring that the AGYW identified the interventions, it was important that the priorities are reviewed by key stakeholders at the community and policy levels. In addition to facilitating buy in these stakeholders, based on their understanding of the context, could provide information on the feasibility of the identified top priority interventions. Hence, the last step in this phase involved the trained AGYW presenting and advocating for their priorities before the community, district and national level stakeholders. It was important to the team that the discussion focused on the AGYW’s interventions. Hence, the AGYW were empowered to present the interventions, followed by a discussion led by the research team on the feasibility of the top priorities. The output was the list of prioritized interventions in order of feasibility. The top health and the top economic interventions were implemented in the last phase of the project.

Reflexivity and quality assurance

Consistent with qualitative research, reflexivity was an important part of our study throughout the research process. It was a form of quality control which recognized any potential subjective influences on the data analysis and interpretation (Berger, 2015).

Reflexivity was implemented at several levels. First, since the community is vulnerable and liable to exploitation, the lead investigators collaborated with the community advisory committee in each context to understand the acceptable research norms and practices which were implemented throughout the project. Second, each lead investigator in each context (Ghana and Uganda) held research team de-briefing meetings with the research assistants. Third, we recognized that while the lead investigators’ contextual experience was valuable, it could also introduce bias in data interpretation. Hence, the study team convened weekly meetings which made it possible for the team to collectively reflect on the data and mitigate any contextualized biases Berger, 2015). Fourth, we conducted a member check whereby the initial data analysis report was shared with a sample of research participants who validated our interpretation of the interviews.

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.

Footnotes

Acknowledgements

The authors acknowledge the critical role played by our brave respondents without whose participation the project would not have been possible. We also acknowledge the contributions of the research assistants and the advisory committees in both settings.

ORCID iD

Lydia Kapiriri

Funding

The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The study was funded by The International Development Research Centre (IDRC). WomeRise program; Award number: 110012. Award Recipients: Kwagala B. & Kapiriri L.

Declaration of Conflicting Interests

The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Note

References

Adams

Behague

Caduff

Löwy

Ortega

(2019). Re-imagining global health through social medicine. Global Public Health, 14(10), 1383–1400. https://doi.org/10.1080/17441692.2019.1587639

Adams

Burke

N. J.

Whitmarsh

(2014). Slow research: Thoughts for a movement in global health. Medical Anthropology, 33(3), 179–197. https://doi.org/10.1080/01459740.2013.858335

Berger

(2015). Now I see it, now I don’t: Researcher’s position and reflexivity in qualitative research. Qualitative Research, 15(2), 219–234. https://doi.org/10.1177/1468794112468475

Bowen

G. A.

(2009). Document analysis as a qualitative research method. Qualitative Research Journal, 9(2), 27–40. https://doi.org/10.3316/QRJ0902027

Burgess

R. A.

(2022). Working in the wake: Transformative global health in an imperfect world. BMJ Global Health, 7(9), Article e010520. https://doi.org/10.1136/bmjgh-2022-010520

Buss

Rutherford

Hinton

Stewart

Lebert

Côté

G. E.

Kisekka

(2017). Gender and artisanal and small-scale mining in central and east Africa: Barriers and benefits. McGill University. Institute for the Study of International Development (ISID).

Cambaco

Cossa

Farnham

Macete

Winkler

M. S.

Gross

Munguambe

(2024). Applying the photovoice method with adolescents in mining areas in rural Mozambique: Critical reflections and lessons learned. Global Health Action, 17(1), Article 2305506. https://doi.org/10.1080/16549716.2024.2305506

Canadian Coalition for Global Health Research . (2015). CCGHR principles for global health research. https://cagh-acsm.org/sites/default/files/principles-ghr-companion-doc.pdf

Chakraborty

Daruwalla

Gupta

A. D.

Machchhar

Kakad

Adelkar

Osrin

(2020). Using participatory learning and action in a community-based intervention to prevent violence against women and girls in Mumbai’s informal settlements. International Journal of Qualitative Methods, 19(2), Article 1609406920972234. https://doi.org/10.1177/1609406920972234

10.

Chidwick

Baumann

Ogba

Banfield

DiLiberto

D. D.

(2022). Exploring adolescent engagement in sexual and reproductive health research in Kenya, Rwanda, Tanzania, and Uganda: A scoping review. PLOS global public health, 2(10), Article e0000208. https://doi.org/10.1371/journal.pgph.0000208

11.

Chidwick

Randolph-Koranteng

Kwagala

Mensah

Osei

Wandera

S. O.

Kapiriri

(2023). Exploring economic and health interventions to support adolescents’ resilience and coping in mining communities: A scoping review. The Extractive Industries and Society, 16(2023), Article 101369. https://doi.org/10.1016/j.exis.2023.101369

12.

Colorafi

K. J.

Evans

(2016 July). Qualitative Descriptive Methods in Health Science Research. HERD, 9(4), 16-25. https://doi.org/10.1177/1937586715614171

13.

Davison

C. M.

Bartels

S. A.

Purkey

Neely

A. H.

Bisung

Collier

Adams

L. V.

Aldersey

H. M.

Hoyt

Kivland

C. L.

Carpenter

Talbot

E. A.

(2021). Last mile research: A conceptual map. Global Health Action, 14(1), Article 1893026. https://doi.org/10.1080/16549716.2021.1893026

14.

D’Souza

M. S.

Karkada

S. N.

Somayaji

Venkatesaperumal

(2013). Women’s well-being and reproductive health in Indian mining community: Need for empowerment. Reproductive Health, 10(24), 1–12. https://doi.org/10.1186/1742-4755-10-24

15.

Elder

B. C.

Odoyo

K. O.

(2018). Multiple methodologies: Using community-based participatory research and decolonizing methodologies in Kenya. International Journal of Qualitative Studies in Education, 31(4), 293–311. https://doi.org/10.1080/09518398.2017.1422290

16.

Freeman

E. R.

Brugge

Bennett-Bradley

W. M.

Levy

J. I.

Carrasco

E. R.

(2006). Challenges of conducting community-based participatory research in Boston’s neighborhoods to reduce disparities in asthma. Journal of Urban Health, 83(6), 1013–1021. https://doi.org/10.1007/s11524-006-9111-0

17.

Freire

Pope

Jeffrey

Andrews

Nott

Bowman

(2022). Engaging with children and adolescents: A systematic review of participatory methods and approaches in research informing the development of health resources and interventions. Adolescent Research Review, 7(3), 335–354. https://doi.org/10.1007/s40894-022-00181-w

18.

Ghana Health Service . (2024). Profile - Northern region. Available from: https://ghs.gov.gh/northern-3/

19.

Goopy

Kassan

(2019). Arts-based engagement ethnography: An approach for making research engaging and knowledge transferable when working with harder-to-reach communities. International Journal of Qualitative Methods, 18(2019), Article 1609406918820424. https://doi.org/10.1177/1609406918820424

20.

Hawke

L. D.

Darnay

Relihan

Khaleghi-Moghaddam

Barbic

Lachance

Ben-David

Brown

Iyer

Chaim

Soklaridis

Kidd

S. A.

Halsall

Mathias

Henderson

(2020). Enhancing researcher capacity to engage youth in research: Researchers’ engagement experiences, barriers and capacity development priorities. Health Expectations, 23(3), 584–592. https://doi.org/10.1111/hex.13032

21.

Hilson

(2009). Small-scale mining, poverty and economic development in sub-Saharan Africa: An overview. Resources Policy, 34(1–2), 1–5. https://doi.org/10.1016/j.resourpol.2008.12.001

22.

Hilson

Osei

(2014). Tackling youth unemployment in sub-Saharan Africa: Is there a role for artisanal and small-scale mining? Futures, 62(2014), 83–94. https://doi.org/10.1016/j.futures.2014.05.004

23.

Himmelsbach

G. S.

Zabré

H. R.

Leuenberger

Knoblauch

A. M.

Brugger

Winkler

M. S.

(2023). Exploring the impact of mining on community health and health service delivery: Perceptions of key informants involved in gold mining communities in Burkina Faso. International Journal of Environmental Research and Public Health, 20(24), 7167. https://doi.org/10.3390/ijerph20247167

24.

Hsieh

H. F.

Shannon

S. E.

(2005). Three approaches to qualitative content analysis. Qualitative Health Research, 15(9), 1277–1288. https://doi.org/10.1177/1049732305276687

25.

Huang

Jiang

(2024). Co-producing access (ible) knowledge: Methodological reflections on a community-based participatory research. International Journal of Qualitative Methods, 23(3), Article 16094069241257947. https://doi.org/10.1177/16094069241257947

26.

Israel

B. A.

Coombe

C. M.

Cheezum

R. R.

Schulz

A. J.

McGranaghan

R. J.

Lichtenstein

Reyes

A. G.

Clement

Burris

(2010). Community-based participatory research: A capacity-building approach for policy advocacy aimed at eliminating health disparities. American Journal of Public Health, 100(11), 2094–2102. https://doi.org/10.2105/AJPH.2009.170506

27.

Kaefer

Roper

Sinha

(2015). A software-assisted qualitative content analysis of news articles: Example and reflections. Forum Qualitative Sozialforschung/Forum: Qualitative Social Research, 16(2), Art8. https://doi.org/10.17169/fqs-16.2.2123

28.

Kassanda District Local

Government.

(2021). Budget framework paper financial year 2021/22. Accessed at: https://budget.finance.go.ug/sites/default/files/Indivisual%20LG%20Budgets/Vote%20625-Kassanda%20District%20Local%20Government-BFP2021-22.pdf

29.

Khalesi

Z. B.

Sigaroudi

A. E.

Farmanbar

(2020). Participatory action research approach to improve adolescent girls' reproductive health. JBRA Assisted Reproduction, 24(4), 416–420. https://doi.org/10.5935/1518-0557.20200034

30.

Khosla

Venkatapuram

(2023). What is a justice-oriented approach to global health? BMJ Global Health, 8(3), 8–10. https://doi.org/10.1136/bmjgh-2023-012155

31.

Klitzman

(2013). How IRBs view and make decisions about coercion and undue influence. Journal of Medical Ethics, 39(4), 224–229. https://doi.org/10.1136/medethics-2011-100439

32.

Lawrence

L. M.

Bishop

Curran

(2019). Integrated knowledge translation with publichealth policy makers: A scoping review. Healthcare Policy, 14(3), 55–77. https://doi.org/10.12927/hcpol.2019.25792

33.

Liebenberg

Sylliboy

Davis-Ward

Vincent

(2017). Meaningful engagement of Indigenous youth in PAR: The role of community partnerships. International Journal of Qualitative Methods, 16(1), Article 1609406917704095. https://doi.org/10.1177/1609406917704095

34.

Local Government - Republic of Uganda . (2024). District profile: Namayingo. Available from: https://namayingo.go.ug/content/district-profile

35.

Lofton

Norr

K. F.

Jere

Patil

Banda

(2020). Developing action plans in youth photovoice to address community-level HIV risk in rural Malawi. International Journal of Qualitative Methods, 19(2020), Article 1609406920920139. https://doi.org/10.1177/1609406920920139

36.

McCracken

(2020). Ethics as obligation: Reconciling diverging research practices with marginalized communities. International Journal of Qualitative Methods, 19(2020), Article 1609406920964336. https://doi.org/10.1177/1609406920964336

37.

Murray

A. L.

Xie

(2024). Engaging adolescents in contemporary longitudinal health research: Strategies for promoting participation and retention. Journal of Adolescent Health, 74(1), 9–17. https://doi.org/10.1016/j.jadohealth.2023.06.032

38.

Nowshin

Kapiriri

Davison

C. M.

Harms

Kwagala

Mutabazi

M. G.

Niec

(2022). Sexual and reproductive health and rights of “last mile” adolescents: A scoping review. Sexual and Reproductive Health Matters, 30(1), Article 2077283. https://doi.org/10.1080/26410397.2022.2077283

39.

Nykiforuk

C. I.

Vallianatos

Nieuwendyk

L. M.

(2011). Photovoice as a method for revealing community perceptions of the built and social environment. International Journal of Qualitative Methods, 10(2), 103–124. https://doi.org/10.1177/160940691101000201

40.

Osei

Yeboah

Kumi

Antoh

E. F.

(2021). Government's ban on Artisanal and Small-Scale Mining, youth livelihoods and imagined futures in Ghana. Resources Policy, 72(102008), Article 102008. https://doi.org/10.1016/j.resourpol.2021.102008

41.

Ozer

E. J.

Ritterman

M. L.

Wanis

M. G.

(2010). Participatory action research (PAR) in middle school: Opportunities, constraints, and key processes. American Journal of Community Psychology, 46(1–2), 152–166. https://doi.org/10.1007/s10464-010-9335-8

42.

Pedrajas

Choritz

(2016). Getting to the last mile in least developed countries: United Nations Development Program. https://www.undp.org/sites/g/files/zskgke326/files/publications/getting-to-the-last-mile-oct-2016.pdf

43.

Randolph-Koranteng

Chidwick

Kwagala

Osei

Mensah

Owiredu

Kapiriri

, (np-submitted). Examining global and national policies on interventions for adolescent and youth resilience across economic, health, and mining sectors: A comparative policy analysis.

44.

Swanson

L. A.

Leader

(2023). The case for using an intergenerational multi-methods approach in community-based research. International Journal of Qualitative Methods, 22(3), Article 16094069231184823. https://doi.org/10.1177/16094069231184823

45.

Szymuś

Manaboriboon

Mohammed

F. E. A.

Hanna

K. F.

Okonkwo

E. H.

Măties

Nasrallah

Shukla

(2024). Meaningful youth engagement in sexual and reproductive health and rights decision making. Lancet Global Health, 12(1), e20–e21. https://doi.org/10.1016/S2214-109X(23)00493-X

46.

Tardieu

Haig Friedman

Benett

Randell-Shaheen

El Remaly

Barbas

(2023). The ethics of participatory action research with people living in poverty. Civic sociology, 4(1), Article 57386. https://doi.org/10.1525/cs.2022.57386

47.

UN Sustainable Development Group . (2022). Operationalizing leaving No one behind. https://unsdg.un.org/sites/default/files/2022-04/Operationalizing_LNOB_-_final_with_Annexes_090422.pdf

48.

UN Sustainable Development Group . (2024). Leave No one behind. Available from. https://unsdg.un.org/2030-agenda/universal-values/leave-no-one-behind

49.

Villa-Torres

Svanemyr

(2015). Ensuring youth's right to participation and promotion of youth leadership in the development of sexual and reproductive health policies and programs. Journal of Adolescent Health, 56(1), S51–S57. https://doi.org/10.1016/j.jadohealth.2014.07.022

50.

Warraitch

Bruce

Lee

Curran

Khraisha

Hadfield

(2023). Involving adolescents in the design, implementation, evaluation and dissemination of health research: An umbrella review protocol. BMJ Open, 13(6), Article e069695. https://doi.org/10.1136/bmjopen-2022-069695

51.

World Health Organization . (2015). Global strategy for women’s, children’s and adolescents’ health (2016-2030). https://apps.who.int/gb/ebwha/pdf_files/WHA76/A76_5-en.pdf

52.

Yamane

(1973). Statistics: An introductory analysis.

53.

Yonas

M. A.

Burke

J. G.

Miller

(2013). Visual voices: A participatory method for engaging adolescents in research and knowledge transfer. Clinical and Translational Science, 6(1), 72–77. https://doi.org/10.1111/cts.12028

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

Abstract

Keywords

Introduction

Ethical Considerations

Study Overview

Methods

Study Setting

Phase 1: Building a Common Understanding (Feb- April 2023)

Stakeholder Engagement

Phase 2: Systematic Collecting and Synthesizing of Information

Desk Review (May-August 2023)

Survey of a Sample of the AGYW (March- June 2023)

Interviews (April- August 2023)

Interviews with the leaders

Interviews with the AGYW

Focus group discussions

Overall Synthesis (June-September 2023)

Phase 3: Building a Common Understanding of the Findings and Identifying Priority Interventions (October- December 2023)

Building a Common Understanding of the Findings

The Modified Nominal Group Discussions and Consensus Building

Engaging the Key Stakeholders in the Discussion of the Interventions

Reflexivity and quality assurance

Results and Discussion

Conclusions

Footnotes

Acknowledgements

ORCID iD

Funding

Declaration of Conflicting Interests

Note

References