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Climate change is directly and indirectly linked to human health, including through access to treatment and care. Our systematic review presents a systems understanding of the nexus between drought and antiretroviral therapy (ART) adherence in HIV-positive individuals in the African setting. Narrative synthesis of 111 studies retrieved from Web of Science, PubMed/MEDLINE, and PsycINFO suggests that livelihoods and economic conditions, comorbidities and ART regimens, human mobility, and psychobehavioural dispositions and support systems interact in complex ways in the drought-ART adherence nexus in Africa. Economic and livelihood-related challenges appear to impose the strongest impact on human interactions, actions, and systems that culminate in non-adherence. Indeed, the complex pathways identified by our systems approach emphasise the need for more integrated research approaches to understanding this phenomenon and developing interventions.

We examine data from young women and men in South Africa and young female sex workers in Uganda to explore the inequalities and hardships experienced during the COVID-19 pandemic and investigate the opportunities and ability presented to navigate in a virtual world to build an inclusive supportive future for young people on the move. We argue that against the backdrop of a fragile past, young people who see their today disturbed, tomorrow reshaped and their futures interrupted, need support to interact with their social environment and adjust their lives and expectations amidst the changing influences of social forces.

Tobacco is the leading preventable cause of death globally, causing approximately 7 million deaths each year. No ethical standard exists to guide researchers considering their obligation and ability to provide treatment for study participants who use tobacco. We propose that tobacco cessation treatment should be offered as ancillary care to interested study participants who use tobacco. We share a case study in which we describe our approach to implementing a brief behavioural tobacco cessation intervention as part of an observational study of tobacco use patterns in South Africa.

Background: The impact of school closures due to COVID-19 raised widespread concerns about children’s health and well-being. We examine the impact on the sexual health needs of learners in the context of COVID-19 related lockdowns in rural KwaZulu-Natal, South Africa.Methods: In July–November 2020 and August–November 2021 we conducted 24 in-depth interviews and 8 group discussions with teachers and learners from 4 schools, community members and key education stakeholders. All interviews were conducted by telephone. We used a thematic analysis approach and Nvivo 12 software to manage the data.Results: Four main themes related to the COVID-19 pandemic emerged from the data: the sexual and reproductive health (SRH) of learners in the lead-up to the pandemic; the impact of COVID-19 on learners’ SRH and wellbeing; the opportunities schools provided to support sexual well-being of learners during the pandemic; and the role of schools in supporting SRH for learners during the pandemic. Learners and stakeholders reported that the SRH of young people was affected by alcohol misuse, poor SRH knowledge and few pathways to link learners with services. Stakeholders working with schools reported that a lack of access to biomedical interventions (e.g., contraception) increased learner pregnancies. Gender-based violence in learners’ households was reported to have increased during the COVID-19 pandemic related to loss of income. School closures disrupted the provision of a safe space to provide SRH and HIV-education through Life Orientation lessons and school nurse talks. This loss of a safe space also left learners vulnerable to sexual and physical violence. However, once schools re-opened, daily COVID-19 screening in schools provided the opportunity to identify and support vulnerable children who had other social needs (food and uniforms).Conclusion: The COVID-19 pandemic may have increased SRH needs and vulnerability of school-going children in a high HIV-burden rural setting. School shutdowns reduced the opportunity for schools to provide a vital safe space and information to enhance SRH for adolescents. Schools play a vital health promotion and social protection role.

Background Limited research has been conducted on explanations and understandings of biobanking for future genomic research in African contexts with low literacy and limited healthcare access. We report on the findings of a sub-study on participant understanding embedded in a multi-disease community health screening and biobank platform study known as ‘Vukuzazi’ in rural KwaZulu-Natal, South Africa. Methods Semi-structured interviews were conducted with research participants who had been invited to take part in the Vukuzazi study, including both participants and non-participants, and research staff that worked on the study. The interviews were transcribed, and themes were identified from the interview transcripts, manually coded, and thematically analysed. Results Thirty-nine individuals were interviewed. We found that the research team explained biobanking and future genomic research by describing how hereditary characteristics create similarities among individuals. However, recollection and understanding of this explanation seven months after participation was variable. The large volume of information about the Vukuzazi study objectives and procedures presented a challenge to participant recall. By the time of interviews, some participants recalled rudimentary facts about the genetic aspects of the study, but many expressed little to no interest in genetics and biobanking. Conclusion Participant’s understanding of information related to genetics and biobanking provided during the consent process is affected by the volume of information as well as participant’s interest (or lack thereof) in the subject matter being discussed. We recommend that future studies undertaking biobanking and genomic research treat explanations of this kind of research to participants as an on-going process of communication between researchers, participants and the community and that explanatory imagery and video graphic storytelling should be incorporated into theses explanations as these have previously been found to facilitate understanding among those with low literacy levels. Studies should also avoid having broader research objectives as this can divert participant’s interest and therefore understanding of why their samples are being collected.

Background This article discusses our reflections on ethical and methodological challenges when conducting separate interviews with individuals in dyads in the uMkhanyakude district, South Africa. Our work is embedded in an ethnographic study exploring care relationships between adolescents and their older carers in the context of a large-donor funded HIV programme. We use these reflections to discuss some of the challenges and present possible management strategies that may be adopted in conducting dyadic health research in resource-poor settings. Methods Drawing from the relational agency, three rounds of separate interviews and participant observation were undertaken with dyads of adolescents aged between 13 and 19 and their older carers aged 50+ from October 2017 to September 2018. A reflexive journal was kept to record the interviewer's experiences of the whole research process. We identified methodological and ethical challenges from these data during the thematic analysis. Results A total of 36 separate interviews were conducted with six pairs of adolescent-older carer dyads (n = 12 participants). Five themes emerged: recruitment of dyads, consenting dyads, confidentiality, conducting separate interviews with adolescents and older carers, and interviewer-dyad interaction. We also illustrated how we dealt with these challenges. Conclusions Results from this study can guide the recruitment, consenting and collecting data for health studies that employ a similar form of enquiry in LMICs. However, ethical and methodological challenges should be recognised as features of the relationships between cross-generation dyads rather than weaknesses of the method.

Young migrants in sub-Saharan Africa are particularly vulnerable to HIV-acquisition. Despite this, they are consistently under-served by services, with low uptake and engagement. We adopted a commu...

Background: The COVID-19 pandemic and the non-pharmacological prevention methods have affected the wellbeing of older people. In this paper we focus on the wellbeing, and vulnerability, of older people in rural northern KwaZulu-Natal, South Africa during the first year of the pandemic. Methods: We conducted a series of up to four monthly in-depth interviews with 26 people aged 60 years and older. Interviews were conducted by telephone, because of restrictions on face-to-face contact, and digitally recorded. After transcription and translation, the data were coded thematically, with analysis guided by a wellbeing theoretical framework. Results: Having access to food, to healthcare and to somewhere they felt safe to stay, was essential for everyone, but for many managing expenses became more of a struggle as adult children who had lost their source of employment came home to stay. However, despite the shortages of money, the importance of relationships, whether they are familial or the close community of neighbours, was highlighted in the accounts from a number of participants. Older people not only got help with day-to-day life from others, but also found solace in the company of others. The sense of community, from family and neighbours, helped to ease some of the stress experienced as a result of the lockdowns. Conclusions: The COVID-19 pandemic and the restrictions imposed to limit the spread of the virus impacted the wellbeing of older adults in rural KwaZulu-Natal. Wellbeing for many older people has been nurtured by relationships with family and friends.

Informed by an existing hope scale, we explored the roles of hope, happiness, and life satisfaction in adolescent risk behaviours in rural KwaZulu-Natal, South Africa, a setting with high HIV prevalence. In 2016 data were collected from two resource-limited communities using in-depth interviews, group discussions and lifeline-drawings with 53 young people (aged 15 to 17 years). Applying both deductive and inductive approaches, thematic analysis was used to analyse the data. Young people felt that there was nothing to do in their communities and no way out of their adverse situations. They experienced trauma of loss due to HIV-related deaths, and lack of support and guidance which they wanted if they were to be more hopeful. Continual and extended exposure to adverse experiences such as community violence and economic hardship had a negative impact on young people’s lives and increased participation in risk behaviours. To develop HIV prevention and resilience interventions in such communities, there is a need to take account of the context of young people’s lives. Rather than ignoring the structural causes of the infection, risk factors should be contextualised as a key component of any attempts to change behaviours. Resource and power inequalities should be addressed rather than developing individualised interventions which may inadvertently increase social inequalities.

PurposeWe examine the levels of post-trial responsibility ascribed to different stakeholders, following a community-based clinical trial and how the ‘responsibility’ is understood.MethodsWe employed photovoice, unstructured observations and key informant interviews to gain insights into contexts of access to care following transition to the public health system post trial. We used an inductive narrative analysis to explore experiences and understandings of post-trial access (PTA).ResultsIn their photovoice stories, many participants expressed a sense of abandonment after the trial. This was viewed as a contributing factor to failing to re-engage with care available in the public health system. This led to the experiences of loss as some trial participants defaulted and died. Research investigators, department of health participants and sponsor agreed that PTA was especially important for communities in resource-limited settings. The government has an obligation towards its citizens while researchers have a responsibility to ensure a smooth transition of patients to public clinics. Sponsors have a responsibility to ensure that the trial is conducted in accordance with the protocol and post-trial agreements are in place and adhered to. Research partnerships among stakeholders were affected by power imbalances making it difficult to negotiate and plan for post-trial care responsibilities.ConclusionsThe research community still struggles with understanding the scope of PTA responsibilities. Power dynamics between public health actors and research sponsors need to be managed to ensure that government involvement is not tokenistic. The responsibility of trial participants and ethics committees needs to be investigated further.

Climate change is directly and indirectly linked to human health, including through access to treatment and care. Our systematic review presents a ‘systems’ understanding of the nexus between drought and antiretroviral treatment (ART) adherence in HIV-positive individuals in the African setting. Narrative synthesis of 111 studies retrieved from Web of Science, PubMed/Medline, and PsycINFO suggests that economic and livelihoods conditions, comorbidities and ART regimens, human mobility, and psycho-behavioural dispositions and support systems interact in complex ways in the drought-ART adherence nexus in Africa. Economic and livelihood-related challenges appear to impose the strongest impact on human interactions, actions and systems that culminate in non-adherence. Indeed, the complex pathways identified by our systems approach emphasise the need for more integrated research approaches to understanding this phenomenon and develop interventions.

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.

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.

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.

We describe and reflect on a rapid qualitative survey approach called “Broad Brush Survey” (BBS) used in six community-randomized trials (CRTs)/studies in Zambia and South Africa (2004–2018) to document, compare, classify, and communicate community features systematically for public health and multidisciplinary research ends. BBS is based on a set sequence of participatory qualitative methods and fieldwork carried out prior to a CRT intervention and/or research by social scientists to generate rapid community profiles using four key indicators: physical features, social organization, networks, and community narratives. Profiling makes apparent similarities and differences, enabling comparison across communities and can be facilitated by an ideal model of open-closed systems. Findings have provided practical outputs (e.g., community profiles) and academic opportunities (e.g., community typologies). The BBS approach enables complex social landscapes to be incorporated in CRTs. This method has proven to be useful, adaptable and to have multidisciplinary appeal.

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.

A link between adversity, including low socio-economic status, and behaviours which carry health risks, such as alcohol consumption, has often been observed. The causes of this link are, however, poorly understood, making it difficult to explain why the association is often not linear and why there is so much variability between groups and individuals facing similar adversity. We investigate the use of the concept of emergent properties in explaining the link and its non-linear nature. `Emergent properties' arise from the interaction of factors or items in a high-level system which, as a result, has qualities possessed by none of the individual factors. We apply a mixed methods approach to examine the association of an example emergent property, hope, and alcohol consumption among adolescents in a rural South African site. We found that among adolescents living in similar contexts, there was enough variance in reported levels of hope, that an association with alcohol use could be identified. This result is cause for optimism regarding the potential use of emergent properties in explaining variations in risk behaviour. Improving our measurement of emergent properties is perhaps the biggest challenge facing this approach. More work is needed to take further the task of identifying emergent properties capable of distilling the influence of lower level variables into single measures useful for analysis and policy purposes.

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.

BackgroundYoung people's health service utilisation (the number accessing a facility) has been the focus of guidelines and health systems strengthening policies. This is due to young people being at an increased health risk because of inequitable access and utilisation of health services, which is more pronounced in rural settings with limited service availability. This is a major concern as globally, youth constitute a considerable and increasing part of the population in Sub-Saharan Africa.ObjectiveThe objective of this paper is to present a comprehensive approach for the exploration of health service utilisation by young people in rural KwaZulu-Natal, South Africa. We examined barriers and facilitators conceptualised by the constructs of the Theory of Planned Behaviour, framed within a socio-ecological model.MethodsData were collected in January to June 2017 from two sites using in-depth interviews, spiral transect walks and community mapping with young people (aged 10 to 24 years), primary care health providers, school health professionals, community stakeholders and young people's parents.ResultsSocio-ecological and behavioural factors influenced young people's intention to use services. Barriers included perceived negative attitudes of health providers and perceived poor staff competencies. Facilitators included an appreciation of receiving health education and assumed improved health. At social and community levels, normative beliefs hindered young people from utilising services as they feared stigmatisation and gossip. At a public policy level, structural elements had a disempowering effect as the physical layout of the clinics hindered utilisation, limited resources influenced staffing, and facility opening times were not convenient for school goers.ConclusionWe suggest that to fully appreciate the complexity of health service utilisation, it is necessary to not only consider factors and processes relevant to the individual, but also acknowledge and act upon, the disjuncture between community level cultural values, norms and national policies.

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.

Supplemental material, QHR809940_Supplemental_Material_REV4 for Value and Limitations of Broad Brush Surveys Used in Community-Randomized Trials in Southern Africa by Virginia Bond, Fredrick Ngwenya, Emma Murray, Nothando Ngwenya, Lario Viljoen, Dumile Gumede, Chiti Bwalya, Jabulile Mantantana, Graeme Hoddinott, Peter J. Dodd, Helen Ayles, Musonda Simwinga, Sandra Wallman and Janet Seeley in Qualitative Health Research

Supplemental material, BBSinCRTS_Table5__Resubmission_Supplementary_20180803 for Value and Limitations of Broad Brush Surveys Used in Community-Randomized Trials in Southern Africa by Virginia Bond, Fredrick Ngwenya, Emma Murray, Nothando Ngwenya, Lario Viljoen, Dumile Gumede, Chiti Bwalya, Jabulile Mantantana, Graeme Hoddinott, Peter J. Dodd, Helen Ayles, Musonda Simwinga, Sandra Wallman and Janet Seeley in Qualitative Health Research

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.

The aim of this paper is to understand the process of information disclosure and privacy as patients share their news of lung cancer with significant others.Twenty patients with lung cancer and 17 family members/friends accompanying them at diagnosis-giving completed either individual or dyad semi-structured interviews. Initial thematic analysis, then Petronio's Communication Privacy Management theory was used to inform interpretation.Patients described a sense of ownership of the news of their cancer and sought control of how, when and with whom it was shared. Family members expressed a need to follow the patients' rules in sharing this news, which limited their own support systems. Patients and family members had to live within the relational communication boundaries in order to maintain their trusting relationship and avoid potential disruptions.Patients as individuals are strongly interlinked with significant others, which impacts on their experience of disclosing private information. This shapes their psychological processes and outcomes impacting on their illness experience. This should be considered when developing interventions to support patients with sharing bad news. Copyright © 2015 John WileySons, Ltd.

Additional file 1: Table S1. Provisional diagnoses/presenting condition among 10–24 yr olds by gender and age group (Pink register data, 2 PHC, 6 months in 2015/16).

Additional file 2: Table S2. Treatment among 10–24 yr olds by gender and age group (Pink register data, 2 PHC, 6 months in 2015/16)