‘A volunteer for life’

1. Umodzi Family Centre, Blantyre, Malawi (photo taken by author during fieldwork, 1 December 2018).

On a rainy Tuesday night in January 2019, I received a WhatsApp message from Keto, a 17-year-old young man, at around eight in the evening. ‘I need to see you,’ it said, ‘I just need someone to talk to.’ The text was followed by twelve heavily crying emojis. Keto was not taking his anti-retroviral medications as required. He explained that he felt very alone in a house full of siblings who did not take medication; now, he was forced to attend the monthly teen-club clinic. ‘I am taking a break. For the next month, I will not take my meds,’ he stated. That was the beginning of more than 1,000 hours I spent chatting with adolescents on WhatsApp as part of my fieldwork.

Between November 2018 and June 2019, while working on my PhD (entitled ‘Sexual and Reproductive Health Service Use and Resilience among Adolescents Living with HIV [ALHIV] and Attending a Teen-Club Clinic in Urban Blantyre, Malawi’), I conducted an eight-month mixed-methods study to understand ALHIV access to health services. The key challenge of my research was to try to understand how young people with life-long conditions such as HIV strive to do well despite adversity; that is, how they aspire to and exercise resilience. This challenge was born out of my volunteer work in this exact clinic three years prior to starting my doctoral studies in 2017. Now, spending time in the clinic in Blantyre under a different mantle, I was faced with the question of how we as ethnographers negotiate the transition from being a volunteer to a researcher in a group of young people.

As a volunteer, my role involved serving refreshments during break times and facilitating discussions scheduled for teen-club meetings and workshops. Sometimes, I merely sat and conversed with young people, giving time and support within or outside the clinic. Now in the context of my doctoral research, I asked myself how I could keep up with the dialogues that took place exclusively through the WhatsApp messaging service and how these dialogues could constitute a research method. In addition, on such an informal and intimate platform I needed to negotiate boundaries between ‘researcher’, ‘friend’, and ‘volunteer’ while maintaining my research goal as well as the adolescents’ best interests. As a medical anthropology and public health student, researcher, and previously a volunteer, I now write this article to contribute to discussions on the methodological challenges of navigating transitions between shifting roles when working with young people deemed ‘vulnerable’ in the production of knowledge.

From other work on ALHIV (Hodes et al. 2018), street youths (Theron & Malindi 2010), and ARV clinic ethnographies (Nguyen 2010), I knew that building rapport with those I wished to interview was critical. I aimed to understand how various interactions and encounters at home, in school, at the clinic, and within the community informed young people’s use of services to enhance wellbeing over time. Our discussions continued at participants’ homes, university lecture halls, seminar rooms, teen-club meetings, and in my makeshift office. Sometimes we talked as we walked down the street, in the school grounds, or along clinic corridors. The chats’ topics spanned from well-wishing to educational funding, weddings, family conflicts, and funerals. These discussions offered my interlocutors—young people, caregivers, and health providers—opportunities to reflect on how adolescents negotiate and exploit varied resources to support their wellbeing.

I had to keep cultivating both old and new relationships. Aged 15–19, some adolescents referred to me as an ‘aunt’, regarding me as an elder and an authority. Most called me by my first name, which helped reduce the distance between us and facilitated our ability to have open discussions about their lives. To a few, I became an older friend, a confidante, a personal support person that they had never had before. As alluded to by Nguyen (2010) and Biehl (2007), forming friendships generates richer data illuminated by bolstered rapport through open and in-depth discussions with the same participants in varied social spaces.

Trying to balance my different roles vis-à-vis these adolescents, bearing in mind power relations, and ensuring that no-one was left behind, we agreed to set up a closed WhatsApp group. More adolescents joined, some requesting private one-to-one conversations when they felt the need to talk. Some ALHIV complained that I paid more attention to those with phones (and thus able to use WhatsApp) than those without. Others felt I did not give their parents or guardians enough time and support. The chat messages covered far more than I had anticipated; the highly frequent exchanges, which occurred throughout the day and night and included both individual and group discussions, gave me exceptional insight into their circumstances. It dawned on me that the presence of a researcher arouses curiosity and provokes the consideration and expression of various identities, relationships, and experiences among interlocutors.

Consequently, I began to hold meetings and group discussions with parents and guardians on Sunday afternoons. However, by the third month of data collection, fewer invited participants were turning up because of the farming season. Two more WhatsApp groups were formed with adolescents’ parents, guardians, and health workers during the study’s debriefing workshops and guardian sessions. Rules and administration were discussed within the groups to keep order. I tried to play a minimal role in the chat groups and let participants share their voices and their everyday experiences (Narayan 1993). The text chats were reasonably private and so questions naturally arose on how I was going to incorporate these into my research narrative.

It was a challenge to maintain the newly formed ALHIV group chats, as such interactions quickly evolved into friendships that required more open and frank talks. Many of the adolescents who I’d regularly meet ‘emptied their heavy hearts’, laughed heartily, or asked to be referred to a nurse or specialist. While I was happy to engage in these chats, I was still a researcher; such sudden and dramatic transitions raised ethical issues regarding what might be used as data and whether my interlocutors were always aware that ‘auntie’ or ‘friend’ was simultaneously someone doing research. To adapt, I continued to take notes as key ethnographic data and expanded my descriptive and reflective notes and transcripts on those ALHIV and caregivers who had consented to meet for multiple interviews. In the successive meetings, we reviewed the notes and discussed experiences to inform themes for further analysis.

Yet my roles were blurred not only in relation to the youth themselves. Some caregivers/relatives of the adolescents would send me messages or call to ask for contributions to school fees or to request referrals to social welfare services. Some believed that I knew their young kin ‘better’ than them, and booked appointments or stopped me in clinic corridors accordingly, often to discuss their concerns about young people having sexual relationships, drinking, or accessing pornography. These conversations were often intense, and so there was a need to balance my desire for ‘research saturation’ so as not to compromise my wellbeing (Wray, Markovic, and Manderson 2007). I constantly had to remind myself to comply with ethical guidelines and to offer equal opportunity for all to participate in the research while protecting their confidentiality and safeguarding their identities. I referred ALHIV and caregivers to dedicated mentors, teen-club study coordinators, and programme managers for their best interests. This was one way of managing the increasingly blurry lines between my roles.

Working with multiple groups (ALHIV, their caregivers, and health workers) provided space in which participants representing different interests could reflect on their life experiences. I learnt that some parents had been subjected to confessional statements by group members (e.g., ‘Hello, my name is [. . .] and I have HIV’) before starting Sunday meetings despite not being comfortable with disclosing their own status. Others appreciated the therapeutic dialogues (Moyer 2015). This discrepancy highlighted the need for constant communication with caregivers to improve relationships and trust. Adolescents were able to relay some of their worst fears and, through expression, magnify their autonomy and foreground any existing tensions related to their wellbeing (particularly with regards to meaning and decision making). Twelve months after I finished my fieldwork, I still receive calls in the middle of the night and messages that need responses, as well as referrals to clinic staff or specialists. My role as a volunteer continues. It seems I was never a student researcher; in the eyes of my participants, I was always a volunteer at the teen-club clinic.

As my account shows, the boundaries between volunteer and researcher roles can easily become blurred due to sustained periods spent interacting, interviewing, and building relationships during fieldwork. To address this challenge, I underwent a period of critical and public reflection on myself, an example of reflexivity, in an attempt to acknowledge my multiple identities and roles as a volunteer, researcher, confidante, and student (Narayan 1993). To a large degree, some experiences were beyond my control, illustrating the thin line between insider and outsider roles. I had to navigate the beliefs of caregivers and ALHIV that my presence meant significant changes and support would follow. It can be suggested that, even though being a volunteer made my integration into the clinic and into relationships a lot easier, in some instances, particularly when I refused a request for help, my role as a researcher was put into question.

This is why I held regular debriefing sessions with research assistants, supervisors, and the advisory panel; it was important to discuss my methodological challenges. I reinforced my role as a researcher by continuously attending and giving feedback sessions on my research in the weekly clinic planning sessions, as well as the guardian and teen-club clinic sessions. In addition, during in-depth and group discussions, I resorted to giving realistic responses, refusing to provide false hope, and offered referral support to participants who wished to speak with a dedicated nurse or counsellor within the teen-club clinic.

I have provided in these Field Notes some of my insights on navigating the boundaries between the shifting roles and relationships that may be occupied by researchers working with ALHIV. I have taken particular care to draw attention to the challenges and opportunities one may face when working with adolescents over an extended period in different capacities.

Acknowledgements

I acknowledge support from the adolescents attending UFC ART and teen-club clinic as well as caregivers and staff. Prof. Sam Phiri, Dr. Ken Malisita and your entire UFC team, Prof. Don Mathanga, and MAC-CDAC technical and support staff helped make this research possible. I appreciate my supervisors, Prof. Lenore Manderson, Dr Effie Chipeta and Prof. Alister Munthali, for their guidance and support. This research was supported by the Consortium for Advanced Research Training in Africa (CARTA). CARTA is jointly led by the African Population and Health Research Center and the University of the Witwatersrand, and is funded by the Carnegie Corporation of New York (Grant No. B 8606.R02), Sida (Grant No. 54100113), the DELTAS Africa Initiative (Grant No. 107768/Z/15/Z) and Deutscher Akademischer Austauschdienst (DAAD). The DELTAS Africa Initiative is an independent funding scheme of the African Academy of Sciences’ (AAS) Alliance for Accelerating Excellence in Science in Africa (AESA) and is supported by the New Partnership for Africa’s Development (NEPAD) Planning and Coordinating Agency, with funding from the Wellcome Trust (UK) and the UK government. The statements made and views expressed are solely the responsibility of the Fellow.

About the author

Blessings N. Kaunda-Khangamwa is a CARTA PhD Fellow in the School of Public Health at the University of Witwatersrand, Johannesburg, South Africa. She is a research fellow and teaches on a part-time basis at the School of Public Health and Family Medicine, College of Medicine, University of Malawi. She is passionate about adolescent health, sexual reproductive health, HIV/AIDS, gender, methodological issues, research, and development. Her background is in sociology, medical anthropology, and public health. She has growing experience working in the areas of resilience research, monitoring and evaluation, malaria, pneumonia, and maternal and child health for international consultancies and agencies.

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