Study population

Sixteen AYA living with TB, aged 16–24, and having received at least 2 weeks of TB treatment were recruited to participate in the study. Purposive sampling was used in recruiting participants to represent the entire age range and array of length of times on treatment. Recruitment was based on a target sample size of 10–20 interviews and reaching saturation. These AYA participants alongside healthcare providers and policy stakeholders were all interviewed between 01/04/2021 and 31/10/2021. Interviews with AYAs were conducted at one of the seven primary healthcare clinics (PHCs) in the high-density suburbs of Harare in Zimbabwe. These PHCs provide nurse-led, acute primary care for the treatment of locally common infections, including the diagnosis of and treatment for HIV and TB. Individuals are assigned to the PHC closest to their home where operating hours are weekdays from 8am to 5pm. They were selected as recruitment sites because of their high number of TB notifications across all age groups. Individuals diagnosed with TB, regardless of age, usually visit the clinic for drug refills and treatment monitoring once a week during the intensive phase of treatment, which ordinarily lasts for two months, and then again once every two weeks during the four-month continuation phase.

Eligible AYA were identified by polyclinic staff using the National Tuberculosis Programme (NTP) registers and clinic attendance. They were invited to participate by polyclinic nurses and there were no refusals. Written informed consent was provided by all AYA over the age of 18 and consent from parents or guardians were provided for AYA between the ages of 16–18. The participants ranged in age from 16 to 24 years, with the majority of participants (13/16) aged between 18 and 24 years. There was an equal number of male (n = 8) and female (n = 8) participants. All had been on TB treatment between two to seven months at the time of data collection. Twelve participants were HIV negative and four were living with HIV.

Eleven healthcare providers, who were working directly with AYA affected by TB in their primary roles (i.e. TB nurse) at the seven PHCs, were invited and provided written informed consent. They were selected based on the recommendations of the head nurse/matron of each clinic. Nine policy stakeholders were invited to participate and provided written informed consent. They were identified using purposive sampling to ensure that key organizations influencing relevant policies were represented within the study. They were recruited from the National Tuberculosis Programme, the AIDS and TB unit within the Ministry of Health as well as district officers who are employees of the Ministry of Health tasked to oversee the implementation of specific activities within the district, including the PHCs. In addition some individuals were recruited from Harare City Health, a municipality health directorate, as well as country/regional WHO staff.

Data collection

The sixteen AYA participated in a four-hour participatory workshop facilitated in Shona by two experienced Zimbabwean qualitative researchers (CN and FRK). Two workshops were held with groups of nine and seven participants, based on AYA availability for each scheduled workshop. None of the AYA participants were previously known to one another. Each workshop was conducted by the study researchers in the local language of Shona within the compound of a recruitment polyclinic. Participatory activities including collages [28], buzz groups and brainstorms were used in the workshops to generate collective narratives (i.e. shared individual experiences) through group interactions. An example of how this worked is that participants were provided a set of exploratory questions to discuss in smaller groups (or 2–3 each) to encourage active participation, discussion and sharing of experiences before coming together as a larger group to discuss further. Topics covered included the AYA TB journey, its related impact on their wellbeing, and service provision for this age group.

Fifteen of these AYA then participated in individual in-depth interviews a few weeks later, with one AYA declining. These in-person interviews, assisted with semi-structured guides, were conducted in Shona by one of two experienced Zimbabwean qualitative researchers (CN and FRK). They were held at one of the PHCs and lasted 30–45 minutes. Interviews with AYA focused on their individual TB journeys to date, including service provision, psychosocial challenges and treatment adherence. This gave an opportunity to explore more personal experiences, which may not have been adequately explored in the workshops given the method’s focus on collective narratives.

The interviews with healthcare providers explored barriers to TB diagnosis and treatment, adolescent well-being and AYA medical care using semi-structured guides and were conducted in Shona or English by experienced qualitative researchers (CN, FRK and PW), at polyclinics. Interviews with policymakers were conducted in English by PW. Interviews with both stakeholder groups lasted between 30–45 minutes. Data were audio recorded and transcribed and once validated the audio-files were deleted. Shona transcripts were translated verbatim into English. Pseudonyms were used in transcripts and in this manuscript to protect participant anonymity. Fieldnotes and photos of workshop materials was included in the analysis.

Data analysis

Familiarization codes were identified deductively and inductively after reading the workshop and in-depth interview transcripts, and a coding framework was developed. The in-depth inductive thematic analysis consisted of six steps including: data familiarization, keyword identification, code selection, theme development, conceptualization through the interpretation of keywords, codes and themes, and finally the development of a conceptual model [29]. The deductive coding, informed by previous work in this area [30–32], drew on the four levels conceptualized within the socioecological framework: i) individuals, ii) family/community, iii) provider/health facility and iv) policy and health system. The analysis of the three datasets (AYA, healthcare providers and policymakers) was initially conducted separately and then these analyses were triangulated to identify areas of similarity and divergence. Data were organized and coded using NVivo version 12. A constant-comparative approach was adopted to support the thematic analysis, utilizing elements of grounded theory where excerpts of raw data are sorted according to attributes and organized in a structured way to formulate a theory [29]. Analytical ideas identified through the coding process were discussed in frequent team discussions (CMY, SB and PW) and subsequently developed further through analytical memos. The analysis is presented through three indicative case studies, in which we draw together the data collected with each participant to explain their treatment journey and experience. These participants went through the same data collection process as all the other participants, as described above, but were selected due to the commonality of their experiences with others in the sample and the richness of their accounts.

Ethical approval

Ethical approvals were granted by the ethics committees of London School of Hygiene and Tropical Medicine (22764) and the Biomedical Research and Training Institute in Zimbabwe Institutional Review Board: IRB (AP154/2019), the Medical Research Council of Zimbabwe (MRCZ/A/2569. Written informed consent was collected prior to participation. For the AYA participants aged under 18, written consent was sought first from their guardian, followed by their assent. No incentives were provided to participants. However, participants received transport reimbursement and refreshments during the full day workshops.

Needs of AYA with TB

All AYA participants described having unmet acute needs. Although there was some variation across the sample in their specific circumstances, we identified consistent features of their experiences which indicated commonalities in the challenges that they faced. To demonstrate this, we present three case studies, which reflect the dominant pattern identified within the data. These case studies illustrate the AYA participants’ key unmet needs, as well as highlight the disruptive implications this had for their wellbeing and engagement with TB care. We first present three case studies illuminating AYA needs according to the socio-ecological domains (levels) and further expanded in Table 1. In the second part of the results, we describe the interventions which participants suggested could respond to these needs.

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Table 1. AYA TB challenges with indicative insights from adolescents and young adults, healthcare provider and policy makers, according to socio-ecological framework.

https://doi.org/10.1371/journal.pgph.0003659.t001

Mukudzei is a young man aged 23 years, who had encountered multiple delays in being diagnosed with TB, including through a series of misdiagnoses (facility and policy). By the time that he was correctly diagnosed with TB he was very ill. He reported receiving very limited counseling upon his diagnosis and initiation of treatment, and with little previous TB knowledge to draw on, his misunderstandings about TB persisted. He presumed that TB was fatal and in the absence of accurate and reassuring information he became more fearful, unaware of the curative nature of the treatment that he was taking (facility and policy). Although his close family and friends supported him to broadly adhere to treatment, he described feeling extremely isolated and lonely as he was discriminated against by individuals in the community who were not part of his close circle (community) and he further chose to self-isolate. Dispirited by initial reactions within his wider social circle, he chose to conceal his TB status. The side effects of the TB treatment impacted his energy levels and subsequent employability as he was unable to start a new job. The related precarity of not being able to work and generate an income for himself exacerbated his anxiety and sadness about his illness (individual).

A similar story was shared by Tonderai, a young woman aged 19 years, who experienced a two-year delay before receiving a diagnosis. She described experiencing hostile care at the multiple clinics she visited before eventually receiving a confirmatory TB diagnosis (facility and policy). The protracted amount of time between the onset of symptoms and being diagnosed meant that she had already missed a significant amount of school before commencing TB treatment (facility and policy) and the related out-of-pocket healthcare costs had put cumulative economic pressure on her household (individual and community). Her limited school attendance meant that she missed her school examinations, disrupting her educational progress and pushing her back behind her peers. She described feeling very isolated, shunned within her family and by her community because of her illness (community). She felt as though she was the only young person with a TB diagnosis (individual). Although she engaged with treatment, her limited TB literacy exacerbated both her anxiety about her prognosis and her isolation which in turn further undermined her engagement in care and treatment.

These two case studies have broadly similar features, phases and common challenges that were experienced by AYA in this study in managing TB that emerged across all three datasets (AYAs, healthcare providers and policy stakeholders). These experiences highlight protracted delays to TB diagnosis, the compounding consequences of limited investment in TB literacy and an absence of tailored psychosocial support. Without attention to the specific needs of AYA, the physical effects of TB and its related treatment disrupted critical AYA social and educational engagement, as well as their employability and personal or household income.

Within the AYA sample there was one exception. Maidei, a young woman aged 22, had initially encountered financial and educational challenges similar to the two case-studies above, but the consequences of these were mitigated by the support and guidance provided by her mother, who herself had previously had TB. Unlike the other AYA, Maidei could benefit from the relatively high pre-existing TB literacy within her household to help her understand her prognosis and manage her expectations of the fluctuating side-effects of treatment. This enabled her to approach her TB treatment journey with less fear. Knowing that the treatment was curative and receiving support from her family, she felt motivated to adhere to treatment. Aware of her mother’s earlier diagnosis and recovery, she described feeling comforted that she was not alone and that her current discomfort was temporary and that she too could get better.

In the interviews with healthcare providers and policymakers, similar concerns were echoed. They described delays in diagnosis, limited knowledge of TB in the community, self-imposed isolation, a paucity of counseling and health information for AYA at the start of treatment and the unfriendliness of health services to adolescents with TB. The common features of AYA experiences are organised by the four socio-ecological domains below in Table 1.

Proposed interventions

In response to the needs of AYA with TB, participants proposed interventions to address these shortcomings (further highlighted in Table 2 below). While interventions may be implemented at a policy level, their influence is likely to percolate down through the socio-ecological domains, precipitating into health facilities, communities, and individuals. Policy level interventions are described first, recognising that they will exert an influence on all other domains. Individual interventions are omitted as they are largely resolved by policy, facility and community level interventions.

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Table 2. Study participant recommended interventions to address identified AYA TB care challenges.

https://doi.org/10.1371/journal.pgph.0003659.t002

Policy interventions

To gain attention and allocate appropriate resources towards AYA TB care, health care providers and policymakers recognized that it was necessary to develop policies that state the need for youth-centered services. As one policymaker (#3, male, international) argues:

“[if we] actually mainstream them as a focus in those policy guidelines or policy documents, then we know that everyone in the country is going to focus upon them. So, we need that as number one, the policy guidance and their inclusion within policy.”

There was also an appreciation of the value of global leadership and advocacy in triggering youth-centred policy shifts at a national level and to facilitating the development of operational guidelines. There was consensus that AYA would be more readily prioritized if age-disaggregated data were available showing the burden of TB amongst this age-group. Policy makers emphasized the value of WHO recommendations to collect age-disaggregated data, if such data are analyzed as part of the Global TB report, they would be constructive in catalyzing the implementation of youth-centered policy at a national level.

Healthcare providers described the need for further guidance to reduce their clinical uncertainty about how to adapt treatment and care practices to AYA to better respond to their specific needs and challenges. For example, participants described the need for greater international leadership in advocating for reducing the duration of mandatory isolation that is recommended for AYA initiating TB treatment. This in turn would help the National TB Programme ensure that AYA are not required to isolate for any longer than is clinically necessary. Redressing the harms of unnecessarily prolonged isolation could alleviate many of the consequent psychosocial challenges AYA experience including inhibited social lives and disrupted educational and income-generating opportunities.

To further ameliorate the social harms of being associated with TB, all three participant groups highlighted the need for more investment in nationally implemented TB education and stigma-reduction campaigns. They argued that these should be focused on the general population, including communicating that AYA may be affected but that treatment would eliminate transmissibility and was curative.

All three groups recognised that social protection was required to mitigate the catastrophic financial impacts incurred by households, and individuals, when supporting AYA through TB treatment as a mechanism to cushion against the negative socioeconomic consequences of TB. Health care providers also highlighted the need for subsidized transport support, incorporated into the government funding of TB care, to ensure AYA were able to attend clinic appointments.

Facility level interventions

All stakeholders agreed that additional training should be provided to healthcare providers working at facilities providing TB care to AYA to increase their awareness of the high TB risk among AYA and to provide youth-friendly and confidential care. This was strongly recommended by AYA themselves, who described how being confident that their healthcare providers knew how to engage with young people and “actually knows who you are and sits down with you and starts talking with you.” (Mukudzei male, aged 23) would elevate their trust in the care they receive and support engagement. This was reinforced by healthcare providers themselves, some of whom spoke about their lack of confidence in their ability to provide effective, youth-appropriate care:

“This is the most difficult group to deal with—the adolescents—so I think the training should be ongoing. There should be refresher courses so that we keep in line with their needs” (healthcare provider #9, female).

There was also consensus about the need for youth-centered models of care. Four core components were identified that should underpin youth-friendly TB services: 1) adapted clinic-opening hours to fit around school or work hours; 2) provision of youth-friendly spaces where AYA could meet their peers affected by TB; 3) access to and ongoing counseling to support TB literacy; 4) delivery of differentiated psychosocial support care, potentially provided by peers, to encourage sustained adherence and to improve mental health. Examples of these youth-friendly services were brainstormed and captured by AYA during the participatory workshops as seen in Fig 1.

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Fig 1. Brainstorm of AYA friendly services during participatory workshops.

https://doi.org/10.1371/journal.pgph.0003659.g001

The value of provider-led counselling and psychosocial support was widely recognized, but particularly emphasized by AYA who considered it as vital for optimal adherence. As one AYA (Sibusisiwe, female, aged 19) shared:

“They should have counsellors that tell adolescents that if you take your pills without skipping, TB will be treated in the stipulated time frame that you are given. But if you take the pills and you skip some days, which will affect you in the future.”

There was also enthusiasm across all three groups for investing in the development of peer support groups that could further extend AYA-tailored TB education and stigma reduction, as well as redressing the widespread isolation experienced by AYA. To ensure that AYA can be connected to peer support soon after their TB diagnosis, participants proposed digital platforms for engaging with support even when needing to be physically distanced from others: “Peer support is something we can learn from HIV… we can use technologies or meet outside or join the group once you’re not infectious…but there are ways to do it” (policy maker #9, female, international)

Interventions at community level

Implementing specific local interventions that mitigate the impacts of stigma, mental health disorders and limited social support within communities was stressed by AYA, healthcare providers and policymakers. Stigma was recognized as an important barrier to AYA engagement in care. Community-led campaigns to increase public awareness about AYA’ susceptibility to TB, TB symptoms and ways to access TB testing if warranted were suggested as a possible solution.

Engaging AYA in the development of community-based programmes was considered critical to the to the success of such campaigns: “You also need to hear the voices of these adolescents, in terms of their experiences, what they would want, how they want the services to be provided and who they want to provide these services to them.” (Policy #7, male, international).