Introduction

In 2015, adolescent girls and young women (AGYW) in Eastern and Southern Africa accounted for 25% of all new HIV infections in this region and remain a priority for HIV prevention [1]. Oral pre-exposure prophylaxis (PrEP) holds promise for HIV prevention in this population, and demonstration projects conducted from 2016 to 2019 in South Africa, Kenya and Zimbabwe have shown high PrEP uptake, with 93–95% of AGYW accepting PrEP the first time it is offered to them [2, 3]. Data show only one-third of AGYW persist with PrEP use beyond three months, with as few as 6%-8% still using PrEP beyond 6 months after initiation [2, 4–6]. This suggest that AGYW are interested in PrEP and see the need for it but face challenges in using it.

Several individual and social factors contribute to low PrEP persistence. Individual factors include forgetfulness, pill fatigue, and logistical challenges such as getting to the clinic [7]. Anticipated and experienced stigma leads to covert PrEP use, which is associated with poor adherence [8]. Lack of disclosure and lack of social support from peers, partners, family, and the community are barriers to persistence, which may be compounded by the fear of or actual and violence towards those who disclose use [9–11]. Direct opposition (where family, partners, or other key influencers express negative comments or discourage or forbid PrEP use) following disclosure can also lead to PrEP discontinuation [12–14].

Social support, defined as the assistance individuals receive or perceive from their social networks [15, 16], is key to HIV treatment and prevention. Social support includes emotional support (care, empathy, trust and love), appraisal support (feedback, assessment), informational support (suggestion, advice, information), and instrumental support (tangible or practical aid and services such as money, time, and reminders) [17, 18]. A large body of evidence has identified social support networks as crucial influences on antiretroviral therapy (ART) adherence [19–21]. Similarly, social support has been shown to improve the impact of HIV prevention interventions [22–25]. Social support networks indirectly mitigate negative stressors such as fear and stigma, and increase self-efficacy [26, 27]. Disclosure is one way of eliciting social support [9, 19, 28]; however, it could also pose a risk of potential backlash such as stigma, intimate partner violence and other negative outcomes [29]. In a study conducted in South Africa, healthcare providers reported that young women living with HIV who disclosed ART use to their significant others and received social support were likely to have better ART adherence outcomes than those who did not disclose or disclosed but did not receive support [30]. These findings suggest receipt of social support has implications on adherence to medication.

Currently, there is limited research exploring the role of social influences on PrEP use among AGYW in eastern and southern Africa. Efforts to build social support for PrEP have centered around peers and male partners [31, 32], but family members may also play an important role, including, parents, siblings, other relatives and caregivers (aunts and grandmothers) who may or may not reside with the PrEP user [33]. Recent findings from 3P (perception, partners, pills), an HIV prevention study conducted among South African AGYW aged 16–25 showed that disclosure to family was associated with approximately six times higher odds of PrEP adherence [8]. These findings support the need to strengthen family relationships and promote social support within families of adolescents to address PrEP adherence challenges among adolescents in sub-Saharan Africa [34]. There is a need for similar support strategies that address AGYW’s PrEP adherence challenges. The few studies [9, 31] that have assessed the effects of disclosure on PrEP use, have not described the types of support AGYW received from their families. Research is needed to inform best practices for identifying support networks and leveraging support from PrEP allies to promote the formation and continuation of early adherence behaviors. Since most adolescents still live in their family homes, parents can strongly influence adolescent motivations, decisions, and behaviors relating to health [35]. This qualitative study aimed to describe family influences on PrEP use by AGYW in a PrEP demonstration project in three African cities to improve our understanding of how programmes can leverage family relationships to support PrEP use.

Methods

Qualitative recruitment

We aimed to recruit up to 75 POWER participants from each of the three cities. For in-depth interviews (IDIs), purposive sampling was used to recruit participants from six PrEP use categories, based on stages of the end-user journey and defined by clinical data and pharmacy records of PrEP refills (see Table 1) [37]. For focus group discussions (FGDs), we used convenience sampling to recruit participants who had received at least one PrEP refill during the POWER study and were attending POWER activities or clinic visits toward the end of their participation in the study [38]. All participants enrolled in the POWER trial were informed about IDIs and FGDs and indicated their willingness to participate during the informed consent process. To select the IDI participants, a list of randomly ordered cohort participants meeting the criteria for each PrEP use category was sent to site by the Qualitative Data Management Center every 2–4 weeks along with a target number of participants to enroll from each category, in order to ensure that the sample included POWER participants from throughout the enrollment period. Participants who had consented were contacted telephonically, one by one in the order of the list provided, and invited to participate, until the target number of interviews was reached. FGD participants were approached during their study visits and invited to take part in the FGDs. AGYW who had participated in the IDIs were excluded from the FGDs.

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Table 1. Description of participant PrEP user categories.

https://doi.org/10.1371/journal.pone.0292529.t001

Data analysis

Dedoose version 6.1.18 was used to code and organize data. Four analysts coded data following a codebook developed iteratively around the end-user journey framework [36]. Each transcript was coded by one analyst. The analysis team periodically compared sections of independently coded transcripts using the Dedoose Training Center and received an average intercoder reliability agreement of 0.76 [38, 39]. Disagreements were discussed and resolved by the analysts.

The current analysis on family influence used a thematic approach, rather than directly following the end-user journey framework, because the guides did not explicitly focus on family influence at each journey stage. We sought to examine family influence in PrEP uptake, the role of family support during PrEP use, experiences of family opposition to PrEP use, and PrEP non-disclosure to family members. Throughout the analysis, we focused on the types of family support or opposition participants experienced and how they felt it facilitated or hindered PrEP initiation and persistence. Fig 1 depicts key themes on the role of family in AGYW’s PrEP use at the two stages of the end-user journey that arose in the thematic analysis: initiation and persistence.

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Fig 1. Conceptual framework: Family role in AGYW PrEP journey.

https://doi.org/10.1371/journal.pone.0292529.g001

Specific relevant codes (e.g., family and disclosure) were selected and a team of social science researchers from South Africa and the United States completed memos for each participant and each FGD from the code reports. The team held regular meetings to discuss memos and themes emanating from the data. Memos were grouped by participant’s end-user journey category and then themes were identified within and across categories; a matrix was created to assess the patterns, similarities, and differences between sites and categories for each theme. Quotes and examples are provided for each theme using pseudonyms to conceal participant identity and ensure anonymity of the IDI and FGD participants. In the IDIs, pseudonyms were selected by the first author and applied during the analysis. In FGDs, pseudonyms were chosen by participants as preferred names to be used during the group discussions. Participant’s age, data collection category, and city are also provided to characterize their experiences.

Findings

Demographic characteristics

A total of 136 AGYW were interviewed (Table 2), including 104 IDI participants and thirty-three FGD participants; one participant participated in both activities. The majority (68.0%) of participants were between the ages of 20–25 years old. In South Africa (CT and JHB sites), almost half (48%) of the participants lived with their parents. Over 80% of participants in South Africa were not married but had sexual partners. In Kisumu, almost half (40%) of the young women were married and lived with their husbands.

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Table 2. Demographic characteristics of the POWER qualitative participants (N = 136).

https://doi.org/10.1371/journal.pone.0292529.t002

Discussion

In this qualitative study, we explored family influence on PrEP initiation and persistence among AGYW in a PrEP demonstration project in three African cities. Our findings show that family members, particularly mothers, play a crucial, direct and indirect, role in PrEP uptake decisions and can support PrEP use. Three main findings emerged from this study: 1) PrEP decision-making is influenced by motivation to prevent HIV based on family experiences of HIV but offset by fear and stress caused by anticipated stigma from family members; 2) Disclosure to family members, especially mothers, and subsequent support are important facilitators of PrEP initiation and persistence for AGYW; 3) For a smaller number of participants, receipt of support is impeded by family members’ limited information about PrEP safety and efficacy. In most instances, access to trusted information resulted in family support even if there was initial resistance.

PrEP uptake decisions among study participants were characterised by mixed emotions. They were motivated to use PrEP by personal experiences of family members dying or living with HIV. Participants’ PrEP acceptance seemed to sometimes be motivated by wanting to avoid becoming like other family members who were directly affected by HIV. However, they also experienced fear and stress related to how their family would respond and anticipated HIV stigma from family members. The fact that PrEP disclosure also required indirectly disclosing that they were sexually active, which is a taboo for AGYW in most African societies. Decision making based on family’s lived experiences of HIV and anticipated HIV-related stigma from family members may distort AGYW’s own judgment of whether or not they decide to accept PrEP and make it challenging to assess their HIV risk. Poor assessment of HIV risk may lead to ineffective use of PrEP [24], if a young women’s motivation to take PrEP is not aligned with their epidemiological risk [24]. However, since young people tend to have an ’optimism bias’ and lack of saliency [2], having the experience of family members with HIV could help them recognize the reality of HIV and its consequences, leading to them to take action to protect themselves. In contrast, anticipated stigma from family members could lead AGYW to delay PrEP initiation or delay PrEP disclosure. Non-disclosure of PrEP use can result in challenges with PrEP storage and adherence [11].

Disclosure to family members, especially to mothers, was important for most AGYW, who often felt the need for their mothers to be aware of and approve of their PrEP use. This was true across sites, despite the fact that Kenyan participants were more likely to live with their male partners, and less likely to live with parents, than those in South Africa. These findings are consistent with those from a study conducted by Scorgie et al. [2021], where AGYW disclosed to female family members (mothers and sisters) to receive support for their PrEP use [31]. Our findings highlight that mothers are important sources of instrumental, emotional, informational, and appraisal support during PrEP uptake decision-making and PrEP use. Before PrEP initiation, mothers generally advised and endorsed PrEP uptake and helped AGYW recognize their vulnerability to HIV. During PrEP use, they offered reminders, transport money, advice, encouragement, and information. Our findings are similar to those on the significant role families play in antiretroviral therapy [19]. Young women valued the validation received from their mothers the most, citing that it assured them that they had made a good decision, with some AGYW reporting that it facilitated their PrEP adherence. Instrumental and informational support from family members also helped AGYW address specific challenges they faced. This suggests the potential benefit of programmatic or counselling support to help them identify the types of support they require and then strategically disclose to family members who they believe will provide those types of support.

Although it was less common, some family members did not have sufficient information about PrEP safety and efficacy. Family members with limited or no information about PrEP either supported AGYW based on the information given by AGYW, or they opposed PrEP use due to safety concerns. This opposition acted as a substantial barrier to providing support to the AGYW in their lives. Prior PrEP awareness and information among family members enabled participants to get informational support from family in addition to emotional support, which helped them make decisions about uptake. These findings are consistent with HIV treatment studies showing that a lack of knowledge and understanding of the therapy resulted in social stigma and discrimination, and that access to information resulted in better support [40]. In this study, family members who made an effort to find out more about PrEP often became more supportive once better informed. Thus, raising PrEP awareness and providing information to adults in communities more generally could enhance PrEP uptake, initiation and persistence while minimizing PrEP opposition.

Overall, we found that PrEP programs would benefit from recognizing family members, most especially mothers, as an important resource supporting PrEP uptake and use among AGYW. While involving mothers in PrEP decisions could reduce stigma and foster social support and potentially lead to better sexual risk outcome [41], previous research highlights potential barriers to parental involvement and support for PrEP use among AGYW. One, as indicated earlier, PrEP use indirectly discloses engagement in sexual activity, and sex in adolescents is frowned upon. Discussions about sex and parental support for PrEP use could be interpreted as an implicit approval for unprotected sex among AGYW [42]. Consequently parents may avoid such discussions without recognising that doing so increases their daughter’s HIV risk [42]. Two, PrEP was initially targeted towards high-risk populations such as sex workers, rather than a tool for anyone who wants to protect themselves from HIV. The resulting stigma associated with PrEP use could be a key challenge to parental support.

Results from this research, along with prior literature, have several implications for AGYW PrEP programming. Firstly, the study underlines that PrEP programming targeting AGYW should engage family members as critical stakeholders. Engaging parents is particularly important in the context of ongoing ethical and legal debates, in South Africa and throughout the region, about children’s legal rights to independently access sexual and reproductive health (SRH) services such as PrEP. Failure to engage parents and ensure acceptability risks resistance to PrEP use, reduced access through refusal to consent, and hostility to health workers who provide PrEP [43]. Since mothers clearly had the strongest influence on participants’ PrEP use in this analysis and another social map analysis conducted as part of the POWER study [39], mother-daughter interventions could be offered to bolster PrEP support. An example is the IMARA intervention, currently being tested in Cape Town [44]. PrEP programmes could also provide factual information about PrEP and its benefits through community and family-level education sessions and materials to assuage common concerns about PrEP safety and clarify the difference between ART and PrEP, thereby reducing PrEP stigma and increasing the chances that PrEP disclosure is received positively.

The study suggests that PrEP should be promoted as a tool for empowerment in preventing HIV rather than for populations at high risk of HIV. Efforts should be made to address sociocultural barriers that prevent discussions on sexuality and HIV [45]. We also recommend educating mothers on these topics to safeguard their daughters’ sexual health. PrEP programmes could also strengthen family support for PrEP by creating awareness of family members’ roles in PrEP uptake decision-making, discussing common barriers to AGYW’s PrEP use, and discussing ways for family to help overcome those barriers and facilitate PrEP adherence and persistence. AGYW have suggested that the PrEP information to their social networks should be provided by healthcare providers to remove the burden on themselves [39].

Secondly, the important role of maternal support suggests that providers should help AGYW think about what support they need to take PrEP and whether disclosing to their mothers could help them gain that support. However, some participants expressed difficulties associated with disclosure and how to communicate PrEP information to their families, with some who stopped PrEP when faced with negative reactions. Therefore, programmes should equip AGYW themselves with information and tools to facilitate PrEP discussion with strategically chosen family members and help with PrEP disclosure should they choose to do so, including disclosure tactics and coping mechanisms if they face negative reactions.

Thirdly, to address AGYW’s fear and anxiety associated with PrEP decision-making, PrEP initiation counselling should screen for and address family-related concerns about PrEP use. This will allow counsellors to identify anticipated stigma and equip AGYW with information, materials, and skills to deal with it. Velloza et al. [2020], also support the need of clinic-based discussions as strategy to address anticipated and experienced stigma [11].

A limitation of this study is that we did not include the perspectives of family members in the qualitative assessment. Participants who agreed to join the qualitative component may have had more positive experiences than those who did not agree to participate. AGYW who had the greatest challenges with PrEP likely did not return to the clinic at all and thus could not be reached for IDIs. Due to a mixed PrEP-use patterns among FGD participants there is a possibility that participants responses were colored by social desirability bias, we took steps to prevent this by using interviewers who were not engaged in the PrEP service delivery under the POWER study and, in FGDs, by using character vignettes to allow participants to share experiences and opinions without claiming them as their own.

Conclusion

This study adds to the literature by describing the types of support that families provide during PrEP initiation and persistence and how AGYW perception of such support can promote PrEP use. Our findings show that families, particularly mothers, can play an instrumental role in facilitating PrEP use. PrEP programmes should leverage family support by providing basic PrEP information about its safety, efficacy, and benefits to families. This way family members can be informed and confident about supporting AGYW to use PrEP successfully for HIV prevention. To support AGYW to start and continue to take PrEP, programmes should also provide additional counselling to AGYW on whether and how to disclose, and on strategies to address anticipated stigma and negative reactions from family members.

Acknowledgments

We would like to thank the POWER study participants for sharing their experiences. A special thanks to our interviewers Phumzile Zwane, Prisca Vundhla, Portia Klaas, Annabel Dollah, Dave Ang’awa, Benn Kwach and Mercy Awuor. We would also like to thank Shannon O’Rourke, Alinda Young, Ariana Katz and Elzette Rousseau our data coders. Thank you to Danielle Wagner, Hlukelo Chauke, Imogen Hawley and Lisa Mills who assisted with initial data analysis, and to Katie Grimes and Shannon O’Rourke for preliminary analysis.