"Asthma is a very bully disease" - patient experiences of living with chronic respiratory diseases in Cape Town, South Africa.

BACKGROUND: Chronic respiratory diseases are common in Cape Town, South Africa. Yet the experiences of how adults with these conditions, such as asthma or COPD (chronic obstructive pulmonary disease), negotiate the health system are poorly understood. Qualitative methodology lends itself to investigate this question. AIM OF STUDY: To explore the "emic" experiences of adults with CRDs in Cape Town when they were negotiating the health system using semi-structured interviews. METHODS: Interviews were conducted following informed consent with purposively sampled adults who had attended public hospitals in Cape Town with chronic respiratory disease flare-ups. This work was nested in the quantitative "Diagnosing Airways Disease" study. The topic guide explored patients' experiences of accessing healthcare including receiving and interpretations of the diagnosis and management, and impacts on daily life. Interviews were conducted in Afrikaans, isiXhosa, or English; transcribed, and translated into English and thematically analysed until saturation. RESULTS: Thirty-two interviews (16 in Afrikaans, 8 in isiXhosa, 8 in English) were completed in 2022. 17 women and 15 men participated. Most participants were older than 50 years (25/32), and most were unemployed (13/32) or retired (11/32). The identified themes were: Perceived causes of illness; experiences of healthcare; perceived risks and barriers when accessing healthcare; and impact on earnings. The perceived causes of their illness and risks were structural, and included air pollution, poor quality housing, occupational exposures, limited healthcare services, and fear of violence. These factors led to self-treatment, sharing of medicines, and delay in receiving a diagnosis. Many paid privately for treatments or services to overcome identified shortcomings of the public healthcare system, and many reported additional significant indirect costs. Being ill had a profound impact on income. The identified themes were explored through the lens of "structural violence", where "social structures stop individuals … from reaching their full potential" (Galtung, 1969). CONCLUSION: In Cape Town structural elements such as stretched healthcare professionals, insufficiently enforced policies on e.g., housing or work-place exposures, poverty and crime made it difficult for participants to successfully navigate their illness experience. It forced some to pay out of pocket to receive perceived better healthcare privately.

"Honestly, this problem has affected me a lot": a qualitative exploration of the lived experiences of people with chronic respiratory disease in Sudan and Tanzania.

BACKGROUND: Over 500 million people live with chronic respiratory diseases globally and approximately 4 million of these, mostly from the low- and middle-income countries including sub-Saharan Africa, die prematurely every year. Despite high CRD morbidity and mortality, only very few studies describe CRDs and little is known about the economic, social and psychological dimensions of living with CRDs in sub-Saharan Africa. We aimed to gain an in-depth understanding of the social, livelihood and psychological dimensions of living with CRD to inform management of CRDs in Sudan and Tanzania. METHOD: We conducted 12 in-depth interviews in 2019 with people with known or suspected CRD and 14 focus group discussions with community members in Gezira state, Sudan and Dodoma region, Tanzania, to share their understanding and experience with CRD. The data was analysed using thematic framework analysis. RESULTS: People with CRD in both contexts reported experiences under two broad themes: impact on economic wellbeing and impact on social and psychological wellbeing. Capacity to do hard physical work was significantly diminished, resulting in direct and indirect economic impacts for them and their families. Direct costs were incurred while seeking healthcare, including expenditures on transportation to health facility and procurement of diagnostic tests and treatments, whilst loss of working hours and jobs resulted in substantial indirect costs. Enacted and internalised stigma leading to withdrawal and social exclusion was described by participants and resulted partly from association of chronic cough with tuberculosis and HIV/AIDS. In Sudan, asthma was described as having negative impact on marital prospects for young women and non-disclosure related to stigma was a particular issue for young people. Impaired community participation and restrictions on social activity led to psychological stress for both people with CRD and their families. CONCLUSION: Chronic respiratory diseases have substantial social and economic impacts among people with CRD and their families in Sudan and Tanzania. Stigma is particularly strong and appears to be driven partly by association of chronic cough with infectiousness. Context-appropriate measures to address economic impacts and chronic cough stigma are urgently needed as part of interventions for chronic respiratory diseases in these sub-Saharan African contexts.

What are the barriers to the diagnosis and management of chronic respiratory disease in sub-Saharan Africa? A qualitative study with healthcare workers, national and regional policy stakeholders in five countries.

OBJECTIVES: Chronic respiratory diseases (CRD) are among the top four non-communicable diseases globally. They are associated with poor health and approximately 4 million deaths every year. The rising burden of CRD in low/middle-income countries will strain already weak health systems. This study aimed to explore the perspectives of healthcare workers and other health policy stakeholders on the barriers to effective diagnosis and management of CRD in Kenya, Malawi, Sudan, Tanzania and Uganda. STUDY DESIGN: Qualitative descriptive study. SETTINGS: Primary, secondary and tertiary health facilities, government agencies and civil society organisations in five sub-Saharan African countries. PARTICIPANTS: We purposively selected 60 national and district-level policy stakeholders, and 49 healthcare workers, based on their roles in policy decision-making or health provision, and conducted key informant interviews and in-depth interviews, respectively, between 2018 and 2019. Data were analysed through framework approach. RESULTS: We identified intersecting vicious cycles of neglect of CRD at strategic policy and healthcare facility levels. Lack of reliable data on burden of disease, due to weak information systems and diagnostic capacity, negatively affected inclusion in policy; this, in turn, was reflected by low budgetary allocations for diagnostic equipment, training and medicines. At the healthcare facility level, inadequate budgetary allocations constrained diagnostic capacity, quality of service delivery and collection of appropriate data, compounding the lack of routine data on burden of disease. CONCLUSION: Health systems in the five countries are ill-equipped to respond to CRD, an issue that has been brought into sharp focus as countries plan for post-COVID-19 lung diseases. CRD are underdiagnosed, under-reported and underfunded, leading to a vicious cycle of invisibility and neglect. Appropriate diagnosis and management require health systems strengthening, particularly at the primary healthcare level.

"We threw away the stones": a mixed method evaluation of a simple cookstove intervention in Malawi.

Background: Air pollution exposure is responsible for a substantial burden of respiratory disease globally. Household air pollution from cooking using biomass is a major contributor to overall exposure in rural low-income settings. Previous research in Malawi has revealed how precarity and food insecurity shape individuals' daily experiences, contributing to perceptions of health. Aiming to avoid a mismatch between research intervention and local context, we introduced a simple cookstove intervention in rural Malawi, analysing change in fine particulate matter (PM 2.5) exposures, and community perceptions. Methods: Following a period of baseline ethnographic research, we distributed 'chitetezo mbaula', locally-made cookstoves, to all households (n=300) in a rural Malawian village. Evaluation incorporated village-wide participant observation and concurrent exposure monitoring using portable PM 2.5 monitors at baseline and follow-up (three months post-intervention). Qualitative data were thematically analysed. Quantitative analysis of exposure data included pre-post intervention comparisons, with datapoints divided into periods of combustion activity (almost exclusively cooking) and non-combustion periods. Findings were integrated at the interpretation stage, using a convergent design mode of synthesis. Results: Individual exposure monitoring pre- and post-cookstove intervention involved a sample of 18 participants (15 female; mean age 43). Post-intervention PM 2.5 exposures (median 9.9µg/m 3 [interquartile range: 2.2-46.5]) were not significantly different to pre-intervention (11.8µg/m 3 [3.8-44.4]); p=0.71. On analysis by activity, background exposures were found to be reduced post-intervention (from 8.2µg/m 3 [2.5-22.0] to 4.6µg/m 3 [1.0-12.6]; p=0.01). Stoves were well-liked and widely used by residents as substitutes for previous cooking methods (mainly three-stone fires). Commonly cited benefits related to fuel saving and shorter cooking times. Conclusions: The cookstove intervention had no impact on cooking-related PM 2.5 exposures. A significant reduction in background exposures may relate to reduced smouldering emissions. Uptake and continued use of the stoves was high amongst community members, who preferred using the stoves to cooking over open fires.

Remote Fieldwork With African Migrant Women During COVID-19 Pandemic in London: A Reflection.

As coronavirus disease 2019 (COVID-19) pandemic unraveled, state-led preventative restrictions created a "new" normal through remote home-working. A long-planned follow-up qualitative research study on risk perceptions and experiences regarding Clay Ingestion among black African women during pregnancy, in London, was disrupted as England went into lockdown. Against this backdrop, we shifted to remote data collection which raised pertinent concerns around access to technology and participant digital skills. We share our experiences of navigating through remote fieldwork during the pandemic with black African mothers with caring responsibilities as well as the extra burden of homeschooling, the challenges we encountered and how we mitigate these and the lessons learnt. Thus, drawing from our remote qualitative research experiences, we refer to notable examples of challenges, mitigating strategies applied and potential lessons to inform future practice.

Personal exposures to fine particulate matter and carbon monoxide in relation to cooking activities in rural Malawi.

Background: Air pollution is a major environmental risk factor for cardiorespiratory disease. Exposures to household air pollution from cooking and other activities, are particularly high in Southern Africa. Following an extended period of participant observation in a village in Malawi, we aimed to assess individuals' exposures to fine particulate matter (PM 2.5) and carbon monoxide (CO) and to investigate the different sources of exposure, including different cooking methods. Methods: Adult residents of a village in Malawi wore personal PM 2.5 and CO monitors for 24-48 hours, sampling every 1 (CO) or 2 minutes (PM 2.5). Subsequent in-person interviews recorded potential exposure details over the time periods. We present means and interquartile ranges for overall exposures and summaries stratified by time and activity (exposure). We employed multivariate regression to further explore these characteristics, and Spearman rank correlation to examine the relationship between paired PM 2.5 and CO exposures. Results : Twenty participants (17 female; median age 40 years, IQR: 37-56) provided 831 hours of paired PM 2.5 and CO data. Concentrations of PM 2.5 during combustion activity, usually cooking, far exceeded background levels (no combustion activity): 97.9µg/m 3 (IQR: 22.9-482.0), vs 7.6µg/m 3, IQR: 2.5-20.6 respectively. Background PM 2.5 concentrations were higher during daytime hours (11.7µg/m 3 [IQR: 5.2-30.0] vs 3.3µg/m 3 at night [IQR: 0.7-8.2]). Highest exposures were influenced by cooking location but associated with charcoal use (for CO) and firewood on a three-stone fire (for PM 2.5). Cooking-related exposures were higher in more ventilated places, such as outside the household or on a walled veranda, than during indoor cooking. Conclusions : The study demonstrates the value of combining personal PM 2.5 exposure data with detailed contextual information for providing deeper insights into pollution sources and influences. The finding of similar/lower exposures during cooking in seemingly less-ventilated places should prompt a re-evaluation of proposed clean air interventions in these settings.

Exploring smoke: an ethnographic study of air pollution in rural Malawi.

Air pollution adversely affects human health, and the climate crisis intensifies the global imperative for action. Low-/middle-income countries (LMIC) suffer particularly high attributable disease burdens. In rural low-resource settings, these are linked to cooking using biomass. Proposed biomedical solutions to air pollution typically involve 'improved cooking technologies', often introduced by high-income country research teams. This ethnography, set in a rural Malawian village, aimed to understand air pollution within its social and environmental context. The results provide a multifaceted account through immersive participant observations with concurrent air quality monitoring, interviews and participatory workshops. Data included quantitative measures of individuals' air pollution exposures paired with activity, qualitative insights into how smoke is experienced in daily life throughout the village, and participants' reflections on potential cleaner air solutions. Individual air quality monitoring demonstrated that particulate levels frequently exceeded upper limits recommended by the WHO, even in the absence of identified sources of biomass burning. Ethnographic findings revealed the overwhelming impact of economic scarcity on individual air pollution exposures. Scarcity affected air pollution exposures through three pathways: daily hardship, limitation and precarity. We use the theory of structural violence, as described by Paul Farmer, and the concept of slow violence to interrogate the origins of this scarcity and global inequality. We draw on the ethnographic findings to critically consider sustainable approaches to cleaner air, without re-enacting existing systemic inequities.

Participant compensation in global health research: a case study.

BACKGROUND: Compensation for research participants can be provided for reasons including reimbursement of costs; compensation for time lost, discomfort or inconvenience; or expression of appreciation for participation. This compensation involves numerous ethical complexities, at times entailing competing risks. In the context of transnational research, often incorporating contexts of economic inequality, power differentials and post-colonialism, these issues extend into wider questions of ethical research conduct. METHODS: We describe experiences of conducting a community-based study of air pollution in southern Malawi incorporating ethnographic, participatory and air quality monitoring elements. Decisions surrounding participant compensation evolved in response to changing circumstances in the field. RESULTS: Attention to careful researcher-participant relationships and responsiveness to community perspectives allowed dynamic, contextualised decision-making around participant compensation. Despite widely cited risks, including but not restricted to undue influence of monetary compensation on participation, we learned that failure to adequately recognise and compensate participants has its own risks, notably the possibility of 'ethics dumping'. CONCLUSIONS: We recommend active engagement with research participants and communities with integration of contextual insights throughout, including participant compensation, as for all elements of research conduct. Equitable research relationships encompass four central values: fairness, care, honesty and respect.

Clay Ingestion During Pregnancy Among Black African Women in a North London Borough: Understanding Cultural Meanings, Integrating Indigenous and Biomedical Knowledge Systems.

Findings from this qualitative audit conducted in a North London Borough among Black African women show that clay ingestion during pregnancy is a cultural phenomenon embedded in indigenous knowledge (IK). Reasons for clay ingestion include curbing morning sickness, nausea, satisfying cravings, "mineral deficiency" and other life sustaining beliefs. However, Public Health practitioners' top down approach and response which considers the practice as "dangerous" and potentially harmful to the health of the woman and unborn child with midwives and General Practitioner doctors called upon to discourage it, risks alienating the target population. Furthermore, within such a top down framework, opportunities to integrate biomedical science and indigenous knowledge systems are potentially missed. The use of culturally sensitive Public health interventions which consider a community approach, while attempting to integrate these two knowledge systems through further research is likely to bear more fruits.

Late booking amongst African women in a London borough, England: implications for health promotion.

The National Institute for Health and Clinical Excellence guidance is that a pregnant woman should see a midwife within the first 13 weeks into her pregnancy, in what is known as the 'booking appointment' or the 'full assessment' where she discusses with the midwife her care plan, medical and family histories and social circumstances. Significant numbers of black African women present after 13 weeks into the pregnancy. This study explores why black African women access the booking appointment after 13 weeks of pregnancy in a London borough. The study took a qualitative approach and used semi-structured interviews with 23 women who self-identified as black African migrants born in a sub-Saharan African country, and had experience of using ante-natal services in the borough. Participants discussed how their cultural understandings of pregnancy influenced timing of the booking appointment. The data was analysed using the thematic approach. Cultural, economic and political contexts within which they experienced pregnancy influenced the timing. Whilst acknowledging the benefits of early booking, this was said to be at odds with their cultural beliefs where pregnancy disclosure within 13 weeks was considered inappropriate. Lack of information about the booking appointment and unresolved immigration issues led to perceptions that they were being brought under the Immigration Department's radar through the booking appointment. Whilst most health promotion information regarding the booking appointment is designed in a top-down fashion, health planners should also recognize ethnic diversities so as to market the booking appointment using downstream approaches that take account of the cultural, political and economic contexts in which migrants/ethnic minority populations live.

Migrants and HIV stigma: findings from the Stigma Index Study (UK).

This paper is based on data collected in 2009 for the international Stigma Index Study which measured the experiences of stigma among participants living with HIV in the UK. Data were collected using a self-completed survey questionnaire and focus group discussions. Quantitative data were analysed using SPSS, while qualitative data were subjected to thematic analysis. The Stigma Index attempts to establish a baseline for documenting the experience of stigma and discrimination by people living with HIV while also acting as an advocacy tool whose power lay in the involvement of people living with HIV in the design of study instruments and data collection. Participants were recruited through collaborations with a broad range of UK HIV support organisations. The ethics protocols used were those described in the Stigma Index guidebook. A total of 867 people living with HIV took part, of whom 276 described themselves as 'immigrants'. Most of this 'migrant' subsample (70%) was women. Nearly, all (91%) identified as heterosexual, while 9% were attracted to someone of the same sex as them. Socioeconomic deprivation was a key theme and they reported other stigmatised chronic conditions in addition to HIV. It is not possible to ascertain from the questionnaire, the migrants' countries of origin and length of stay in the UK. Control of information about HIV was critically managed, with respect to family and partners. Felt stigma increased anxieties about personal safety, particularly among men. Strategies for safeguarding against the negative impact of stigma included avoiding social gatherings, intimacy, and clinical and HIV social care settings. Most participants were unaware of policies and declarations that protected them as persons living with HIV. Specific recommendations include creating awareness about rights as enshrined in various legal frameworks that protect the right of people living with HIV, which has been reconfigured as a 'disability'.

Experiences and challenges of an interprofessional community of practice in HIV and AIDS in Tshwane district, South Africa.

Collaboration amongst stakeholders remains a central tenet to achieving goals in planning, implementation, monitoring and evaluation of HIV and AIDS prevention and care strategies. This paper describes the experiences of members of a health care team who joined efforts to collaborate and form a community of practice (CoP) in HIV and AIDS. Qualitative, exploratory case study methods were used. Twenty-six participants were interviewed. Transcripts from the interviews were subjected to the thematic framework of data analysis. Based on the analysis, three themes emerged as impacting on collaboration and these were: the understanding and expectations of being a CoP member; professionalism and ethics within the CoP and collaboration in HIV and AIDS care. The key findings were that the understanding and expectations from the CoP varied. Ethical principles including respect, trust and confidentiality were identified as key tenets of collaboration and were expressed in various ways. The expectations of being a CoP member, the ethical principles within the CoP all impacted in differing ways on how they collaborated. The implication of this study suggests that consultation during inception and throughout the process, clarification of roles, transparency and respect are cardinal points in professional relationships.

Is the standardised term 'Black African' useful in demographic and health research in the United Kingdom?

OBJECTIVE: The main objective of this paper is to review the literature on the term 'Black African' with respect to a number of themes: its use in the census and official data collections; the acceptability of a colour-based term; the heterogeneity concealed within the 'Black African' collectivity; the invisibility of distinct populations; the concealment of disparities in health, health care, and determinants; the capture of 'Black Africans' in other countries; and a set of possible alternatives for classifying this population. DESIGN: Structured searches were undertaken on a wide range of government and other grey literature sources and on two biomedical databases (Medline and EMBASE), using combinations of search terms for the collectivity and specific national origin groups. RESULTS: Analyses of the data show that the term 'Black African' conceals substantial heterogeneity with respect to national origins, religion, and language. It includes many who have come to the UK since the 1960s from former colonies but also sizeable groups arriving as refugees and asylum seekers from a wide range of African countries. Moreover, its boundaries are fuzzy, especially with regard to those originating in Horn of Africa countries. Marked variations are found in the (albeit limited) available disaggregated data on health and the determinants of inequalities. CONCLUSIONS: Given the substantial increase in the size of the group, the extent to which such heterogeneity can continue to be tolerated in a single term must be questioned. The 'Black African' collectivity merits categorisation that addresses this issue and the proposed regional subdivisions in the Scotland 2006 Census Test currently offer the best solution.