‘A volunteer for life’

In a time of renewed interest in the challenges of adolescent sexual and reproductive health (SRH) and service use, increased scholarly attention paid to fieldwork and knowledge production is critical. I describe the pleasure and challenges of engaging with multiple perspectives, spaces, places, and roles at a family centre in Malawi to understand the complexity of the interactions and relationships related to my doctoral fieldwork. This work is part of a large mixed-method study that explores SRH, service use, and resilience among adolescents living with HIV and attending a teen-club clinic in Blantyre, Malawi. Drawing from resilience theory and experiences of reflexivity, I reflect on my roles as a student of medical anthropology and public health, a ‘friend’, an ‘aunt’, and a ‘volunteer’; on my occupation of diverse spaces (clinics, homes, school grounds, digital); and on my use of multiple methods (including participants’ observations, individual and group interviews, workshops, feedback sessions, and fieldnotes), which make up the data collection, analysis, and interpretation processes. The reflections contained in this essay advance our understanding of the implications of the methodological considerations and ethical questions underscoring approaches to adolescents research

Baseline characteristics of study sites and women enrolled in a three-arm cluster randomized controlled trial: PMTCT uptake and retention (pure) Malawi

Abstract Background Malawi introduced an ambitious public health program known as “Option B+” which provides all HIV-infected pregnant and breastfeeding women with lifelong combination antiretroviral therapy, regardless of WHO clinical stage or CD4 cell count. The PMTCT Uptake and REtention (PURE) study aimed at evaluating the effect of peer-support on care-seeking and retention in care. Methods/design PURE Malawi was a three-arm cluster randomized controlled trial that compared facility-based and community-based models of peer support to standard of care under Option B+ strategy. Each arm was expected to enroll a minimum of 360 women with a total minimum sample size of 1080 participants. 21 sites (clusters) were selected for inclusion in the study. This paper describes the site selection, recruitment, enrollment process and baseline characteristics of study sites and women enrolled in the trial. Results Study implementation was managed by 3 partner organizations; each responsible for 7 study sites. The trial was conducted in the South East, South West, and Central West zones of Malawi, the zones where the implementing partners operate. Study sites included 2 district hospitals, 2 mission hospitals, 2 rural hospitals, 13 health centers and 1 private clinic. Enrollment occurred from November 2013 to November 2014, over a median period of 31 weeks (range 17–51) by site. A total of 1269 HIV-infected pregnant (1094) and breastfeeding (175) women, who were eligible to initiate ART under Option B+, were enrolled. Each site reached or surpassed the minimum sample size. Comparing the number of women enrolled versus antenatal cohort reports, sites recruited a median of 90% (IQR 75–100) of eligible reported women. In the majority of sites the ratio of pregnant and lactating women enrolled in the study was similar to the ratio of reported pregnant and lactating women starting ART in the same sites. The median age of all women was 27 (IQR 22–31) years. All women have ≥20 months of possible follow-up time; 96% ≥ 2 years (24–32 months). Conclusion The PURE Malawi study showed that 3 implementing partner organizations could successfully recruit a complex cohort of pregnant and lactating women across 3 geographical zones in Malawi within a reasonable timeline. Trial registration This study is registered at clinicaltrials.gov - ID Number NCT02005835 . Registered 4 December, 2013

The value of informal care in the context of option B+ in Malawi: a contingent valuation approach

Abstract Background Informal care, the health care provided by the patient’s social network is important in low income settings although its monetary value is rarely estimated. The lack of estimates of the value of informal care has led to its omission in economic evaluations but this can result in incorrect decisions about cost effectiveness of an intervention. We explore the use of contingent valuation methods of willingness to pay (WTP) and willingness to accept (WTA) to estimate the value of informal care provided to HIV infected women that are accessing antiretroviral therapy (ART) under the Option B+ approach to prevention of mother-to-child transmission (PMTCT) of HIV in Malawi. Methods We collected cross sectional data from 93 caregivers of women that received ART care from six health facilities in Malawi. Caregivers of women that reported for ART care on the survey day and consented to participate in the survey were included until the targeted sample size for the facility was reached. We estimated the value of informal care by using the willingness to accept (WTA) and willingness to pay (WTP) approaches. Medians were used to summarize the values and these were compared by the Wilcoxon signed-rank test. Results The median WTA to provide informal care in a month was US$30 and the median WTP for informal care was US$13 and the two were statistically different (p < 0.000). Median WTP was higher in the urban areas than in the rural areas (US$21 vs. US$13, p < 0.001) and for caregivers from households from higher wealth quintile than in the lower quintile (US$15 vs. US$13, p < 0.0462). Conclusion Informal caregivers place substantial value on informal care giving. In low income settings where most caregivers are not formally employed, WTP and WTA approaches can be used to value informal care. Clinical trial number NCT02005835

Post-discharge malaria chemoprevention (PMC) in Malawi: caregivers` acceptance and preferences with regard to delivery methods

Background: In malaria endemic countries of sub-Saharan Africa, many children develop severe anaemia due to previous and current malaria infections. After blood transfusions and antimalarial treatment at the hospital they are usually discharged without any follow-up. In the post-discharge period, these children may contract new malaria infections and develop rebound severe anaemia. A randomised placebo-controlled trial in Malawi showed 31% reduction in malaria- and anaemia-related deaths or hospital readmissions among children under 5 years of age given antimalarial drugs for 3 months post-discharge. Thus, post-discharge malaria chemoprevention (PMC) may provide substantial protection against malaria and anaemia in young children living in areas of high malaria transmission. A delivery implementation trial is currently being conducted in Malawi to determine the optimal strategy for PMC delivery. In the trial, PMC is delivered through community- or facility-based methods with or without the use of reminders via phone text message or visit from a Health Surveillance Assistant. This paper describes the acceptance of PMC among caregivers. Methods: From October to December 2016, 30 in-depth interviews and 5 focus group discussions were conducted with caregivers of children who recently completed the last treatment course in the trial. Views on the feasibility of various delivery methods and reminder strategies were collected. The interviews were transcribed verbatim, translated to English, and coded using the software programme NVivo. Results: Community-based delivery was perceived as more favourable than facility-based delivery due to easy home access to drugs and fewer financial concerns. Many caregivers reported lack of visits from Health Surveillance Assistants and preferred text message reminders sent directly to their phones rather than waiting on these visits. Positive attitudes towards active use of health cards for remembering treatment dates were especially evident. Additionally, caregivers shared positive experiences from participation in the programme and described dihydroartemisinin-piperaquine as a safe and effective antimalarial drug that improved the health and well-being of their children. Conclusions: Post-discharge malaria chemoprevention given to children under the age of 5 previously treated for severe anaemia is highly accepted among caregivers. Caregivers prefer community-based delivery with use of health cards as their primary tool of reference

Post-discharge malaria chemoprevention (PMC) in Malawi: caregivers` acceptance and preferences with regard to delivery methods

Abstract Background In malaria endemic countries of sub-Saharan Africa, many children develop severe anaemia due to previous and current malaria infections. After blood transfusions and antimalarial treatment at the hospital they are usually discharged without any follow-up. In the post-discharge period, these children may contract new malaria infections and develop rebound severe anaemia. A randomised placebo-controlled trial in Malawi showed 31% reduction in malaria- and anaemia-related deaths or hospital readmissions among children under 5 years of age given antimalarial drugs for 3 months post-discharge. Thus, post-discharge malaria chemoprevention (PMC) may provide substantial protection against malaria and anaemia in young children living in areas of high malaria transmission. A delivery implementation trial is currently being conducted in Malawi to determine the optimal strategy for PMC delivery. In the trial, PMC is delivered through community- or facility-based methods with or without the use of reminders via phone text message or visit from a Health Surveillance Assistant. This paper describes the acceptance of PMC among caregivers. Methods From October to December 2016, 30 in-depth interviews and 5 focus group discussions were conducted with caregivers of children who recently completed the last treatment course in the trial. Views on the feasibility of various delivery methods and reminder strategies were collected. The interviews were transcribed verbatim, translated to English, and coded using the software programme NVivo. Results Community-based delivery was perceived as more favourable than facility-based delivery due to easy home access to drugs and fewer financial concerns. Many caregivers reported lack of visits from Health Surveillance Assistants and preferred text message reminders sent directly to their phones rather than waiting on these visits. Positive attitudes towards active use of health cards for remembering treatment dates were especially evident. Additionally, caregivers shared positive experiences from participation in the programme and described dihydroartemisinin-piperaquine as a safe and effective antimalarial drug that improved the health and well-being of their children. Conclusions Post-discharge malaria chemoprevention given to children under the age of 5 previously treated for severe anaemia is highly accepted among caregivers. Caregivers prefer community-based delivery with use of health cards as their primary tool of reference. Trial registration NCT02721420 (February 13, 2016)

Post-discharge malaria chemoprevention (PMC) in Malawi: caregivers` acceptance and preferences with regard to delivery methods

BACKGROUND: In malaria endemic countries of sub-Saharan Africa, many children develop severe anaemia due to previous and current malaria infections. After blood transfusions and antimalarial treatment at the hospital they are usually discharged without any follow-up. In the post-discharge period, these children may contract new malaria infections and develop rebound severe anaemia. A randomised placebo-controlled trial in Malawi showed 31% reduction in malaria- and anaemia-related deaths or hospital readmissions among children under 5 years of age given antimalarial drugs for 3 months post-discharge. Thus, post-discharge malaria chemoprevention (PMC) may provide substantial protection against malaria and anaemia in young children living in areas of high malaria transmission. A delivery implementation trial is currently being conducted in Malawi to determine the optimal strategy for PMC delivery. In the trial, PMC is delivered through community- or facility-based methods with or without the use of reminders via phone text message or visit from a Health Surveillance Assistant. This paper describes the acceptance of PMC among caregivers. METHODS: From October to December 2016, 30 in-depth interviews and 5 focus group discussions were conducted with caregivers of children who recently completed the last treatment course in the trial. Views on the feasibility of various delivery methods and reminder strategies were collected. The interviews were transcribed verbatim, translated to English, and coded using the software programme NVivo. RESULTS: Community-based delivery was perceived as more favourable than facility-based delivery due to easy home access to drugs and fewer financial concerns. Many caregivers reported lack of visits from Health Surveillance Assistants and preferred text message reminders sent directly to their phones rather than waiting on these visits. Positive attitudes towards active use of health cards for remembering treatment dates were especially evident. Additionally, caregivers shared positive experiences from participation in the programme and described dihydroartemisinin-piperaquine as a safe and effective antimalarial drug that improved the health and well-being of their children. CONCLUSIONS: Post-discharge malaria chemoprevention given to children under the age of 5 previously treated for severe anaemia is highly accepted among caregivers. Caregivers prefer community-based delivery with use of health cards as their primary tool of reference

Malawian caregivers’ experiences with HPV vaccination for preadolescent girls: A qualitative study

Introduction: Many low- and middle-income countries have introduced the human papillomavirus (HPV) vaccine, but uptake remains extremely low. Malawi has the second-highest incidence of cervical cancer globally, and launched a national HPV vaccination program in 2019. We sought to understand attitudes about, and experiences with, the HPV vaccine among caregivers of eligible girls in Malawi. Methods: We conducted qualitative interviews with 40 caregivers (parents or guardians) of preadolescent girls in Malawi to understand their experiences with HPV vaccination. We coded the data informed by the Behavioural and Social Drivers of vaccine uptake model and recommendations from WHO’s Strategic Advisory Group of Experts Working Group on Vaccine Hesitancy. Results: In this sample, 37% of age-eligible daughters had not received any HPV vaccine doses, 35% had received 1 dose, 19% had received 2 doses, and 10% had an unknown vaccination status. Caregivers were aware of the dangers of cervical cancer, and understood that HPV vaccine is an effective prevention tool. However, many caregivers had heard rumors about the vaccine, particularly its alleged harmful effect on girls’ future fertility. Many caregivers, especially mothers, felt that school-based vaccination was efficient; but some caregivers expressed disappointment that they had not been more engaged in the school-based delivery of HPV vaccine. Caregivers also reported that the COVID-19 pandemic has been disruptive to vaccination. Conclusions: There are complex and intersecting factors that affect caregivers’ motivation to vaccinate their daughters against HPV, and the practical challenges that caregivers may encounter. We identify areas for future research and intervention that could contribute to cervical cancer elimination: better communicating about vaccine safety (particularly to address concerns about loss of fertility), leveraging the unique advantages of school-based vaccination while ensuring parental engagement, and understanding the complex effects of the COVID-19 pandemic (and vaccination program)

The effect of mobile phone text message reminders on health workers’ adherence to case management guidelines for malaria and other diseases in Malawi: lessons from qualitative data from a cluster-randomized trial

Abstract Background Mobile health (mHealth), which uses technology such as mobile phones to improve patient health and health care delivery, is increasingly being tested as an intervention to promote health worker (HW) performance. This study assessed the effect of short messaging services (SMS) reminders in a study setting. Following a trial of text-message reminders to HWs to improve case management of malaria and other childhood diseases in southern Malawi that showed little effect, qualitative data was collected to explore the reasons why the intervention was ineffective and describe lessons learned. Methods Qualitative data collection was undertaken to lend insight into quantitative results from a trial in which 105 health facilities were randomized to three arms: (1) twice-daily text-message reminders to HWs, including clinicians and drug dispensers, on case management of malaria; (2) twice-daily text-message reminders to HWs on case management of malaria, pneumonia and diarrhoea; and, (3) a control arm. In-depth interviews were conducted with 50 HWs in the intervention arms across seven districts. HWs were asked about acceptability and feasibility of the text-messaging intervention and its perceived impact on recommended case management. The interviews were recorded, transcribed and translated into English for a thematic and framework analysis. Nvivo 11 software was used for data management and analysis. Results A total of 50 HWs were interviewed at 22 facilities. HWs expressed high acceptance of text-message reminders and appreciated messages as job aids and practical reference material for their day-to-day work. However, HWs said that health systems barriers, including very high outpatient workload, commodity stock-outs, and lack of supportive supervision and financial incentives demotivated them, limited their ability to act on messages and therefore adherence to case management guidelines. Drug dispensers were more likely than clinicians to report usage of text-message reminders. Despite these challenges, nearly all HWs expressed a desire for a longer duration of the SMS intervention. Conclusions Text-message reminders to HWs can provide a platform to improve understanding of treatment guidelines and case management decision-making skills, but might not improve actual adherence to guidelines. More interaction, for example through targeted supervision or two-way technology communication, might be an essential intervention component to help address structural barriers and facilitate improved clinical practice

The role of health animators in malaria control: A qualitative study of the health animator (HA) approach within the Majete malaria project (MMP) in Chikwawa District, Malawi

Background: Malaria continues to place a high burden on communities due to challenges reaching intervention target levels in Chikwawa District, Malawi. The Hunger Project Malawi is using a health animator approach (HA) to address gaps in malaria control coverage. We explored the influence of community-based volunteers known as health animators (HAs) in malaria control. We assessed the impact of HAs on knowledge, attitudes, and practices towards malaria interventions. Methods: This paper draws on the qualitative data collected to explore the roles of communities, HAs and formal health workers attending and not attending malaria workshops for malaria control. Purposive sampling was used to select 78 respondents. We conducted 10 separate focus group discussions (FGDs)-(n = 6) with community members and (n = 4) key informants. Nine in-depth interviews (IDIs) were held with HAs and Health Surveillance Assistants (HSAs) in three focal areas near Majete Wildlife Reserve. Nvivo 11 was used for coding and analysis. We employed the framework analysis and social capital theory to determine how the intervention influenced health and social outcomes. Results: Using education, feedback sessions and advocacy in malaria workshop had mixed outcomes. There was a high awareness of community participation and comprehensive knowledge of the HA approach as key to malaria control. HAs were identified as playing a complementary role in malaria intervention. Community members' attitudes towards advocacy for better health services were poor. Attendance in malaria workshops was sporadic towards the final year of the intervention. Respondents mentioned positive attitudes and practices on net usage for prevention and prompt health-seeking behaviours. Conclusion: The HA approach is a useful strategy for complementing malaria prevention strategies in rural communities and improving practices for health-seeking behaviour. Various factors influence HAs' motivation, retention, community engagement, and programme sustainability. However, little is known about how these factors interact to influence volunteers' motivation, community participation and sustainability over time. More research is needed to explore the acceptability of an HA approach and the impact on malaria control in other rural communities in Malawi