Table 6 A summary of emerging recommendations for research involving ALH
Overall | |
Researchers have an ethical and professional responsibility to plan studies involving ALH through systematic processes of ongoing engagement with key stakeholders to optimise research, feed into cross-sectoral government and non-government policy development, and to seek opportunities to support young people’s resilience in the short and longer term. Embedding ethical reflection and empirical ethics research within studies can strengthen the rigour and effectiveness of stakeholder engagement, through contributing a greater depth of understanding of forms of vulnerability and resilience for ALH in a given context, and how these may interact with proposed research approaches. Sensitively designed research may also help inform health and social interventions that disrupt patterns of vulnerability for ALH | |
Key finding | What should researchers do? |
Community/home | |
Community-wide stigma/discrimination is reportedly lessening over time but remains widespread, including that adolescents living with perinatal HIV/AIDS infection experience stigma through assumptions of ‘immoral behaviour’ as a result of vertical transmission of HIV/AIDS being less widely understood | • Support government and NGO in planning public engagement on HIV/AIDS and ALH, including vertical modes of transmission, while taking care not to increase stigma around ALH with horizontal transmission • Support involvement of ALH, their families and other key stakeholder in planning public engagement strategies • Work with individual ALH to develop plans for engaging family members, recognising there may be stigma within families |
Poverty is a core structural cause of harm for ALH, including through impacting access to education, a healthy diet, health care at CCC, accurate timing of ART doses and, for girls, ways of managing menstruation, which in turn impacts schooling. Education is further impacted where ALH leave school early to seek paid employment or are forced to wake very early to walk to school The role of the family is core to the risk of ALH experiencing vulnerability and/or resilience, for example through providing moral and practical support to attend CCC appointments, take ARTs on time, and accept and live positively with their status. In practice, family structures and attitudes to HIV/AIDS are diverse, with over half of ALH in AHOS being orphans living with guardians, so that inadequate family support is an import risk for increasing cycles of vulnerability | • Establish effective ancillary care pathways through links with government services, NGOsa supporting poverty alleviation (food distribution, etc.) and through working with young people and their families to support decision-making around financial and economic challenges faced • Ensure participation is practically supportive or, at the very least, cost neutral and look for ways to provide additional support to ALH, such as providing nutritious hot food during clinic visits; ensuring reimbursement of travel accounts for costs and other burdens, e.g., takes account of meals missed while travelling • Link with peer networks, local NGOs and government social services to help connect ALH and their families, including ALH living outside families, with additional social support. (Note below that ALH in boarding schools may also benefit from additional social support.) |
School | |
A core concern for ALH in school who join studies is increasing risks to their privacy, and stigmatisation by staff and students, leading to actions that increase vulnerability through impacts on physical and mental health and educational progress (as a ‘cascade’)(see Tables 3 & 4). Important examples include that: • Typical systems of storage and gaining access to medicines in schools may challenge ALH privacy and timely use • Being out of school to attend CCC and/or research clinic appointments increases existing privacy risks for ALH who need to explain and seek permission for their absence (see Table 3). Strategies adopted may generate harm in the short and longer term, including physical punishment and loss of educational opportunities • Boarding schools may be particularly challenging where ALH lose regular access to positive family support | • Undertake and draw on findings from stakeholder engagement and empirical ethics research to build ALH resilience and reduce risks of increasing vulnerabilities. Examples include: ○ involving ALH and KENEPOTE teachers in designing study information sheets for schools/head & class teachers; ○ supporting ALH in studies to be able to explain to peers and teachers what the study is about without undermining privacy or increasing stigma; ○ ensure support is available to ALH joining studies to catch up on missed lessons, without increasing risks of stigma; ○ designing studies to minimise ALH time out of school Ensure ongoing dialogue and end of study feedback of findings with stakeholders in the education sector (policy and school based) to influence policy and practice. Examples include supporting teaching staff to better understand ALH dilemmas (see Tables 3 and 4) and seek ways to strengthen relations with, and between, students more widely, to address stigma at these levels |
HIV/AIDS Comprehensive Care Clinics | |
Typical and interrelated concerns for ALH attending CCC were linked to structural resource constraints and staff attitudes, and less to privacy risks | • Ensure ongoing dialogue and end of study feedback of findings with stakeholders in the health sector (policy and CCC based) to influence policy and practice, including: ○ Highlighting issues around ALH privacy and staff attitudes that relate to resource constraints, including ways that staff work positively around these constraints ○ Promoting the wider adoption of Youth Friendly HIV/AIDS clinics to minimise time spent out of school for school-going ALH and promote ALH resilience more widely ○ Giving feedback on perverse outcomes of policies in practice, such as ‘pill counting’ ○ Identifying the role that communication and communication skills training can play in supporting health workers and their clients |
Research studies | |
Research participation offers an opportunity to support ALH emotionally and practically through health checks, supportive staff attitudes, providing nutritious meals and meeting up with peers in a safe and friendly space Research participation presents a vulnerability risk to ALH in schools through the time lost from school when attending research appointments. It is important for researchers to recognise that ALH routinely lose time out of school for health reasons, including ill health and attending CCC, in addition to time spent in research participation Research participation may increase existing vulnerabilities through risks to ALH privacy through study information leaflets or being asked to talk to teachers or fellow students about their participation Researchers’ responsibilities to protect participants’ privacy, and ensure participants feel confident about these measures, is likely to be supported where they are approached and recruited by a trusted individual. At the same time, a relationship of trust may influence decision making around joining the study in ways that could undermine full autonomy | • Researchers should recognise the important role they can play individually in building ALH confidence through positive interpersonal interactions during the research encounter. Study planning and staff training should aim to maximise this opportunity, without creating emotional dependency • Participation in research can increase privacy and stigmatisation risks, especially for ALH in school, through researchers’ and students’ communication about the topic of the research (HIV/AIDS) with teachers and other pupils before, during and after the study. Researchers should design and pre-test all written materials (such as information leaflets) carefully to avoid this risk. The research team should also support ALH to be able to talk about the study and their participation in ways that do not imply their HIV status or other health problems. ALH should be involved in processes of developing and pretesting materials and other approaches to limiting risks of stigmatisation • Study planning should center on minimising time that ALH spend out of school to attend research clinic appointments, seeking to limit the time needed and the frequency of appointments as well as planning activities to coincide with school holidays as much as possible • Researchers should recognise, weigh and seek ways to address the risk that trusted individuals who are involved in leading informed consent processes may inappropriately influence potential participants’ decision-making. Appropriate steps include making sure that the individual responsible for seeking informed consent is aware of this risk, is trained to minimise the risk, and that there is no pressure placed on them in relation to numbers recruited over time • Informed assent/consent processes for ALH who are minors, and their parents/guardians, should take careful account of existing family dynamics and seek to ensure that the young person is independently informed and willing to participate. Informed consent should be a process in which researchers can assess understanding and willingness of the young person to join |