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Background In low- and middle-income settings, obtaining informed consent for biobanking may be complicated by socio-economic vulnerability and context-specific power dynamics. We explored participants experiences and perceptions of the research objectives in a community-based multidisease screening and biospecimen collection platform in rural KwaZulu-Natal, South Africa. Methods We undertook semi-structured in-depth interviews to assess participant understanding of the informed consent, research objectives and motivation for participation. Results Thirty-nine people participated (individuals who participated in screening/biospecimen collection and those who did not and members of the research team). Some participants said they understood the information shared with them. Some said they participated due to the perceived benefits of the reimbursement and convenience of free healthcare. Most who did not participate said it was due to logistical rather than ethical concerns. None of the participants recalled aspects of biobanking and genetics from the consent process. Conclusions Although most people understood the study objectives, we observed challenges to identifying language appropriate to explain biobanking and genetic testing to our target population. Engagement with communities to adopt contextually relevant terminologies that participants can understand is crucial. Researchers need to be mindful of the impact of communities’ socio-economic status and how compensation can be potentially coercive.

ObjectivesPublic health interventions designed to interrupt COVID-19 transmission could have deleterious impacts on primary healthcare access. We sought to identify whether implementation of the nationwide lockdown (shelter-in-place) order in South Africa affected ambulatory clinic visitation in rural Kwa-Zulu Natal (KZN).DesignProspective, longitudinal cohort studySettingData were analyzed from the Africa Health Research Institute Health and Demographic Surveillance System, which includes prospective data capture of clinic visits at eleven primary healthcare clinics in northern KwaZulu-NatalParticipantsA total of 36,291 individuals made 55,545 clinic visits during the observation period.Exposure of InterestWe conducted an interrupted time series analysis with regression discontinuity methods to estimate changes in outpatient clinic visitation from 60 days before through 35 days after the lockdown period.Outcome MeasuresDaily clinic visitation at ambulatory clinics. In stratified analyses we assessed visitation for the following sub-categories: child health, perinatal care and family planning, HIV services, noncommunicable diseases, and by age and sex strata.ResultsWe found no change in total clinic visits/clinic/day from prior to and during the lockdown (–6.9 visits/clinic/day, 95%CI –17.4, 3.7) or trends in clinic visitation over time during the lockdown period (–0.2, 95%CI –3.4, 3.1). We did detect a reduction in child healthcare visits at the lockdown (–7.2 visits/clinic/day, 95%CI –9.2, –5.3), which was seen in both children ConclusionsIn rural KZN, the ambulatory healthcare system was largely resilient during the national-wide lockdown order. A major exception was child healthcare visitation, which declined immediately after the lockdown but began to normalize in the weeks thereafter. Future work should explore efforts to decentralize chronic care for high-risk populations and whether catch-up vaccination programs might be required in the wake of these findings.What is already known on this topic?Prior disease epidemics have created severe interruptions in access to primary care in sub-Saharan Africa, resulting in increased child and maternal mortalityData from resource-rich settings and modelling studies have suggested the COVID-19 epidemic and non-pharmacologic measures implemented in response could similarly result in substantial barriers to primary health care access in the regionWe leveraged a clinical information system in rural KwaZulu-Natal to empirically assess the effect of the COVID-19 epidemic and a nationwide lockdown in South Africa on access to primary careWhat this study adds?Access to primary healthcare was largely maintained during the most stringent period of the COVID-19 lockdown in South Africa, with the exception of a temporary drop in child health visitsCreative solutions are needed for sustaining child vaccination programs, and protecting high-risk individuals from risk of nosocomial transmission in resource-limited settings

The period between childhood and adulthood has been characterised as a period of ‘waithood’ in which structural conditions may disable young people’s access to basic resources to become independent adults. We consider the specific implications of this experience for newly migrant young people in KwaZulu-Natal, South Africa. We conducted repeat in-depth interviews and participatory workshops over a 12-month period with 38 young people on their experiences of migration, employment, sexual relationships and approaches taken to mitigate HIV-risk, in a high HIV-risk peri-urban setting. The lives of participants within the first year of arriving in a new place were characterised by fluidity and transience, underpinned by the inherent fragility of options and exacerbated by exploitative employers. Conditions of gendered employment opportunities shaped their capacity to source income, including through sexual relationships. Although risks were evident and ongoing, their significance were under-played with exposure conceived as unavoidable and temporary. HIV prevention services were consequently viewed as relevant to ‘other’ young people. Although navigating an ‘adult’ world, these ‘not yet adults’ are exposed to substantial risks. Services should be tailored to address specific and practical support needs of this transient population, alongside provision of harm-reduction and health support.

ObjectivesWe evaluated whether implementation of lockdown orders in South Africa affected ambulatory clinic visitation in rural Kwa-Zulu Natal (KZN).DesignObservational cohortSettingData were analysed from 11 primary healthcare clinics in northern KZN.ParticipantsA total of 46 523 individuals made 89 476 clinic visits during the observation period.Exposure of interestWe conducted an interrupted time series analysis to estimate changes in clinic visitation with a focus on transitions from the prelockdown to the level 5, 4 and 3 lockdown periods.Outcome measuresDaily clinic visitation at ambulatory clinics. In stratified analyses, we assessed visitation for the following subcategories: child health, perinatal care and family planning, HIV services, non-communicable diseases and by age and sex strata.ResultsWe found no change in total clinic visits/clinic/day at the time of implementation of the level 5 lockdown (change from 90.3 to 84.6 mean visits/clinic/day, 95% CI −16.5 to 3.1), or at the transitions to less stringent level 4 and 3 lockdown levels. We did detect a >50% reduction in child healthcare visits at the start of the level 5 lockdown from 11.9 to 4.7 visits/day (−7.1 visits/clinic/day, 95% CI −8.9 to 5.3), both for children aged ConclusionsIn rural KZN, we identified a significant, although temporary, reduction in child healthcare visitation but general resilience of adult ambulatory care provision during the first 4 months of the lockdown. Future work should explore the impacts of the circulating epidemic on primary care provision and long-term impacts of reduced child visitation on outcomes in the region.

Background Young people aged 10–24 years are a vulnerable group with poor health service access relative to other populations. Recent South African initiatives, the She Conquers campaign, the Integrated School Health Policy and the Adolescent & Youth Health Policy, include a focus on improving the breadth and quality of youth-friendly health service delivery. However, in some settings the provision and impact of scaled-up youth friendly health services has been limited indicating a gap between policy and implementation. In this study we reviewed existing sources of data on health service utilisation to answer the following question: ‘What health conditions do young people present with and what services do they receive at public health clinics, mobile clinics and school health services?’ Methods We conducted a retrospective register review in three purposively selected primary healthcare clinics (PHCC), one mobile clinic, and one school health team in Hlabisa and Mtubatuba sub-districts of uMkhanyakude District, KwaZulu-Natal, South Africa. The focus was service utilisation for any reason by 10–24 year olds. We also conducted descriptive analysis of pre-existing data on service utilisation by young people available from the District Health Information System for all 17 PHCC in the study sub-districts. Results Three quarters of 4121 recorded young person visits in the register review were by females, and 40% of all young person visits were by females aged 20–24 years. The most common presenting conditions were HIV-related, antenatal care, family planning, general non-specific complaints and respiratory problems (excluding TB). There were relatively few recorded consultations for other common conditions affecting young people such as mental health and nutritional problems. Antibiotics, antiretrovirals, contraceptives, vitamins/supplements, and analgesics were most commonly provided. Routine health registers recorded limited information, were often incomplete and/or inconsistent, and age was not routinely recorded. Conclusions Measuring morbidity and service provision are fundamental to informing policy and promoting responsive health systems. Efforts should be intensified to improve the quality and completeness of health registers, with attention to the documentation of important, and currently poorly documented, young people’s health issues such as mental health and nutrition.

ObjectivesThe unmet palliative care need is intensified in resource-limited countries where there is inequitable access to healthcare and adolescents and young adults (AYA) fall between the cracks of paediatric and adult services. We aimed to examine palliative care for AYA with cancer and/or HIV in South Africa.DesignIndividual and small group interviews using process mapping.SettingData were collected between November 2016 and March 2017 with staff from government hospitals, hospices and clinics from three provinces of South Africa.ParticipantsHealth and social care professionals (n=30) (eg, physicians, nurses, social workers, psychologists) from KwaZulu-Natal, Western Cape and Gauteng provinces.MethodsIn this qualitative situational analysis study, participants were recruited to interviews and process mapping used to try and identify palliative care pathways of AYA with palliative care needs. We developed a thematic framework using a deductive approach to analyse the interview data.ResultsPalliative care pathways were not easily identifiable, ambiguous and varied and participants reported on their experiences and perceptions of service provision. Participants expressed that resource challenges limited the service provision. A need for nurse prescribing of pain relief at community level was mentioned as AYA are reluctant to use hospitals and clinics. Lack of (1) palliative care education among professionals, (2) public awareness and (3) adolescent-specific care posed a challenge to service provision.ConclusionsThe changing burden of HIV and increase in cancer prevalence calls for integration of palliative care in mainstream health services. Despite good policies, the pragmatic aspect of training professionals will influence a change in practice. The main task will be to absorb palliative care philosophy and practice at all levels of care to avoid overburdening the care system and to integrate it in community care programmes.

ObjectivesTo understand the experiences of young adults with cancer for whom cure is not likely, in particular what may be specific for people aged 16–40 years and how this might affect care.DesignWe used data from multiple sources (semi-structured interviews with people with cancer, nominated family members and healthcare professionals, and workshops) informed by a preliminary programme theory: realist analysis of data within these themes enabled revision of our theory. A realist logic of analysis explored contexts and mechanisms affecting outcomes of care.SettingThree cancer centres and associated palliative care services across England.ParticipantsWe aimed for a purposive sample of 45 people with cancer from two groups: those aged 16–24 years for whom there may be specialist cancer centres and those 16–40 years cared for through general adult services; each could nominate for interview one family member and one healthcare professional. We interviewed three people aged 16–24 years and 30 people 25–40 years diagnosed with cancer (carcinomas; blood cancers; sarcoma; central nervous system tumours) with a clinician-estimated prognosis of ResultsData were available from 69 interviews (33 people with cancer, 14 family carers, 22 healthcare professionals) and six workshops. Qualitative analysis revealed seven key themes: loss of control; maintenance of normal life; continuity of care; support for professionals; support for families; importance of language chosen by professionals; and financial concerns.ConclusionsCurrent care towards end of life for young adults with cancer and their families does not meet needs and expectations. We identified challenges specific to those aged 16–40 years. The burden that care delivery imposes on healthcare professionals must be recognised. These findings can inform recommendations for measures to be incorporated into services.

A coordinated system of disease surveillance will be critical to effectively control the coronavirus disease 2019 (Covid-19) pandemic. Such systems enable rapid detection and mapping of epidemics and inform allocation of scarce prevention and intervention resources. Although many lower- and middle-income settings lack infrastructure for optimal disease surveillance, health and demographic surveillance systems (HDSS) provide a unique opportunity for epidemic monitoring. This protocol describes a surveillance program at the Africa Health Research Institute’s Population Intervention Platform site in northern KwaZulu-Natal. The program leverages a longstanding HDSS in a rural, resource-limited setting with very high prevalence of HIV and tuberculosis to perform Covid-19 surveillance. Our primary aims include: describing the epidemiology of the Covid-19 epidemic in rural KwaZulu-Natal; determining the impact of the Covid-19 outbreak and non-pharmaceutical control interventions (NPI) on behaviour and wellbeing; determining the impact of HIV and tuberculosis on Covid-19 susceptibility; and using collected data to support the local public-sector health response. The program involves telephone-based interviews with over 20,000 households every four months, plus a sub-study calling 750 households every two weeks. Each call asks a household representative how the epidemic and NPI are affecting the household and conducts a Covid-19 risk screen for all resident members. Any individuals screening positive are invited to a clinical screen, potential test and referral to necessary care – conducted in-person near their home following careful risk minimization procedures. In this protocol we report the details of our cohort design, questionnaires, data and reporting structures, and standard operating procedures in hopes that our project can inform similar efforts elsewhere.

Purpose To review the qualitative literature on experiences of and preferences for end of life care of people with cancer aged 16-40 years (young adults) and their informal carers. Methods A systematic review using narrative synthesis of qualitative studies using the 2006 UK Economic and Social Research Council research methods programme guidance. Seven electronic bibliographic databases, two clinical trials databases, and three relevant theses databases were searched from January 2004 to October 2015. Results Eighteen articles were included from twelve countries. The selected studies included at least 5% of their patient sample within the age range 16-40 years. The studies were heterogeneous in their aims, focus and sample but described different aspects of end-of-life care for people with cancer. Positive experiences included facilitating adaptive coping and receiving palliative home care whilst negative experiences were loss of ‘self’ and non-facilitative services and environment. Preferences included a family centred approach to care, honest conversations about end of life and facilitating normality. Conclusions There is little evidence focused on the end of life needs of young adults. Analysis of reports including some young adults does not explore experience or preferences by age; therefore it is difficult to identify age-specific issues clearly. From this review, we suggest that supportive interventions and education are needed to facilitate open and honest communication at an appropriate level with young people. Future research should focus on age-specific evidence about the end of life experiences and preference for young adults with cancer and their informal carers.

ObjectivesBRIGHTLIGHT is a national evaluation of cancer services for teenagers and young adults in England. Following challenges with recruitment, our aim was to understand more fully healthcare professionals’ perspectives of the challenges of recruiting young people to a low-risk observational study, and to provide guidance for future recruitment processes.DesignQualitative.SettingNational Health Service (NHS) hospitals in England.MethodsSemistructured telephone interviews with a convenience sample of 23 healthcare professionals. Participants included principal investigators/other staff recruiting into the BRIGHTLIGHT study. Data were analysed using framework analysis.ResultsThe emergent themes were linked to levels of research organisational management, described using the levels of social network analysis: micro-level (the individual; in this case the target population to be recruited—young people with cancer); meso-level (the organisation; refers to place of recruitment and people responsible for recruitment); and macro-level (the large-scale or global structure; refers to the wider research function of the NHS and associated policies). Study-related issues occurred across all three levels, which were influenced by the context of the study. At the meso-level, professionals’ perceptions of young people and communication between professionals generated age/cancer type silos, resulting in recruitment of either children or adults, but not both by the same team, and only in the cancer type the recruiting professional was aligned to. At the macro-level the main barrier was discordant configuration of a research service with a clinical service.ConclusionsThis study has identified significant barriers to recruitment mainly at the meso-level and macro-level, which are more challenging for research teams to influence. We suggest that interconnected whole-system changes are required to facilitate the success of interventions designed to improve recruitment. Interventions targeted at study design/management and the micro-level only may be less successful. We offer solutions to be considered by those involved at all levels of research for this population.