‘It’s in our veins’: caring natures and material motivations of community health workers in contexts of economic marginalisation

Khayelitsha, an economically marginal peri-urban settlement in Cape Town, is home to a number of ‘flagship’ public health interventions aimed at HIV/AIDS and TB. Alongside these high-profile, foreign donor-driven treatment and care programmes are a plethora of NGOs that provide a wide range of community-based carework. Some of these organisations are large, well funded and well connected globally, while others are run by a few unemployed women responding to care needs in their neighbourhoods. This article explores the ways that community health workers (CHWs) who work for these organisations understand and speak about their involvement in carework as volunteers, employees or managers of community-based care organisations. Many CHWs framed their work through discourses of gender, religion or culture (‘African-ness’). They also described forms of material or economic benefits of providing carework, but many were concerned that these might be seen as existing in tension with more socially accepted, altruistic motivations for care. We explore here how CHWs narrate and understand their roles and motivations as carers and members of a resource-constrained community.     

‘I was thinking we would be spoon-fed’: Community co-researchers’ perceptions of individual empowerment in participatory health research in Swaziland

Empowerment is an influential concept in global public health. Current theoretical models, which were developed in resource-rich countries, conceptualise individual-level empowerment as a process (or outcome) of developing positive self-perceptions, critical thinking expertise and new behaviours. They neglect the social and structural aspects that were central to early conceptualisations of empowerment, and may be culturally biased. My aim was to elucidate lay-people in Swaziland’s perspectives about individual-level empowerment. Twenty-one focus group discussions with lay-community ‘co-researchers’ were collected longitudinally over 14 months of a participatory health research process. Findings generated using interpretive analysis of epiphanies highlighted the salience of socio-historic context, in limiting the co-researchers’ expectations and experiences, and shaping their perceptions, of empowerment. The findings demonstrate that the co-researchers perceived: working independently and collaboratively; developing new perceptions of others, and technical (health and research) expertise; using expertise to take action; and accessing material resources were important aspects of empowerment. They indicate that individual-level empowerment models utilised in global public health might be enhanced by incorporating social and structural dimensions. These dimensions are needed to capture the relations and interactions which mediate socially excluded people’s agency to access the social and material resources needed to secure their right to health.     

‘I could never have learned this in a lecture’: transformative learning in rural health education

Health indicators for rural populations in Australia continue to lag behind those of urban populations and particularly for Indigenous populations who make up a large proportion of people living in rural and remote Australia. Preparation of health practitioners who are adequately prepared to face the ‘messy swamps’ of rural health practice is a growing challenge. This paper examines the process of learning among health science students from several health disciplines from five Western Australian universities during ‘Country Week’: a one-week intensive experiential interprofessional education program in rural Western Australia. The paper weaves together strands of transformative theory of learning with findings from staff and student reflections from Country Week to explore how facilitated learning in situ can work to produce practitioners better prepared for rural health practice.     

“If I had known,I would have applied”: poor communication,job dissatisfaction,and attrition of rural health workers in Sierra Leone

Background

Sierra Leone’s health outcomes rank among the worst in the world. A major challenge is the shortage of primary healthcare workers (HCWs) in rural areas due to especially high rates of attrition. This study was undertaken to determine the drivers of job dissatisfaction and poor retention among Sierra Leone’s rural HCWs.

Methods

Interviews were conducted with 58 rural and 32 urban primary HCWs in Sierra Leone’s public health sector, complemented by key informant discussions and review of national policy documents. HCW interviews included (1) semi-structured discussion, (2) questionnaire, (3) card sort about HCW priorities, and (4) free-listing of most pressing challenges and needs. Sampling for HCW interviews was stratified purposive, emphasizing rural HCWs.

Results

Among 90 HCWs interviewed, 67% were dissatisfied with their jobs (71% rural vs 52% urban) and 61% intended to leave their post (75% rural vs 38% urban). While working and living conditions and remuneration were significant factors, a major reason for rural HCW disenchantment was their inability to access worker rights, benefits, and advancement opportunities. This was caused by HCWs’ lack of knowledge about human resource (HR) policies and procedures, as well as ambiguity in many policies and inequitable implementation. HCWs reported feeling neglected and marginalized and perceived a lack of transparency. These issues can be attributed to the absence of systems for regular two-way communication between the Ministry of Health and HCWs; lack of official national documents with up-to-date, clear HR policies and procedures for HCWs; pay statements that do not provide a breakdown of financial allowances and withholdings; and lack of HCW induction.

Conclusions

HCWs in Sierra Leone lacked accurate information about entitlements, policies, and procedures, and this was a driver of rural HCW job dissatisfaction and attrition. System-oriented, low-cost initiatives can address these underlying structural causes in Sierra Leone. These issues likely apply to other countries facing HCW retention challenges and should be considered in development of global HCW retention strategies.

     

‘If I went to my mom with that information,I’m dead’: sexual health knowledge barriers among immigrant and refugee Somali young adults in Ohio

Objectives: Adequate knowledge of sexual health among young adults is a critical step in prevention of sexually transmitted diseases and maintenance of adult sexual health. Knowledge of specific barriers to accessing sexual health knowledge can help tailor approaches appropriately. The purpose of this paper was to identify sexual health knowledge barriers among Somali young adults in Ohio.

Design: In-depth interviews were conducted with a convenience sample of 27 Somali young adults aged 18–25 years. Using a grounded theory approach, a semi-structured interview guide comprising open-ended questions and probes was utilized to collect data. Data were analyzed and coded using constant comparative analysis.

Results: Findings revealed sexual health knowledge barriers in the following broad categories: religion, culture and stigma. Cultural and religious norms were deemed an important influence on the community norms largely impacting sexual health knowledge due to stigma and fear of judgment. Participants overcame barriers by seeking information from external sources such as doctors, Internet and peers.

Conclusion: Study findings support an approach that will address sexual health barriers in the Somali immigrant young community at multiple levels: individual, interpersonal and community levels. A collaborative effort across religious, cultural and educational setting is necessary to tailor approaches that meet the needs of the priority group.     

‘When I die,let me be the last.’ Community health worker perspectives on past Ebola and Marburg outbreaks in Uganda

Uganda suffered four Ebola and five Marburg virus outbreaks from 2000 to 2012 with significant health worker mortality. This paper describes findings from 41 interviews with health workers from three outbreaks. Interviewees frequently encountered stigma from their communities, sometimes accompanied by mistrust and violence. These difficulties were defined as ‘challenges of society.’ Health workers also suffered emotional trauma, depressive symptoms, and fear classified as ‘challenges of psyche.’ As the incidence of such outbreaks will likely increase due to ecological and economic trends, health workers require greater access to personal protective equipment (PPE) and knowledge of viral containment. Such improvements would create an optimal psychosocial climate for managing infectious patients ultimately decreasing the severity of future outbreaks.     

‘To be Informed and Involved’: Women's insights on optimising childbirth care in Lithuania

Introduction

The user expectations and experiences of healthcare services are acknowledged as components of the quality of healthcare evaluations. The aim of the study is to analyse women's experiences and views on childbirth care in Lithuania.

Methods

The study used the Babies Born Better (B3) online survey as the data collection instrument. The B3 is an ongoing longitudinal international project, examining the experiences of intrapartum care and developed as part of EU-funded COST Actions (IS0907 and IS1405). Responses to open-ended questions about (1) the best things about the care and (2) things in childbirth care worth changing are included in the current analysis. The participants are 373 women who had given birth within 5 years in Lithuania. A deductive coding framework established by the literature review was used to analyse the qualitative data. The framework involves three main categories: (1) the service, (2) the emotional experience and (3) the individually experienced care, each further divided into subcategories.

Results

Reflecting the experience and views regarding the service at birthplace women wished empowerment, support for their autonomy and to be actively involved in decisions, the need for privacy, information and counselling, especially about breastfeeding. In terms of emotional experience, women highlighted the importance of comprehensibility/feeling of safety, positive manageability of various situations and possibilities for bonding with the newborn. Individually experienced care was described by feedback on specific characteristics of care providers, such as competence, personality traits, time/availability and encouragement of esteem in women in childbirth. The possibilities of homebirth were also discussed. The findings reflected salutogenic principles.

Key Conclusions

The findings suggest that the Lithuanian healthcare system is in a transition from paternalistic attitude-based practices to a shift towards patient-oriented care. Implementation of the improvements suggested for women in childbirth care in Lithuania would require some additional services, improved emotional and intrapersonal aspects of care and a more active role for women.

Patient/Public Contribution

Patients and the public contributed to this study by spreading information about surveys and research findings through their involvement in service user groups that have an interest in maternity care. Members of the patients' groups and the public were involved in the discussion of the results.     

Who is ‘in’ and who is ‘out’? Participation of older persons in health research and the interplay between capital,habitus and field

Abstract

Inclusion and exclusion processes in community engagement do not take place in a vacuum, but are embedded in social, political and institutional contexts. To better capture the interplay between the individual agency of community participants and organizational structures in health research, we use a Bourdieusian framework. The notions of capital, habitus and field allow us to analyse how inclusion and exclusion of older persons in a Dutch healthcare research- and improvement programme are processually shaped overtime. The findings demonstrate that due to the influence of the medical and policy field, older persons with social, cultural and symbolic capital were included in target group panels. Frail older persons lacking these types of capital were often excluded. Despite the high amount of capital, the formally ‘included’ participants still experienced difficulties in engaging effectively in a medical research setting. We distinguish various strategies that older persons developed during the course of the programme to deal with this problem: (1) professionalization, (2) responsibilization, (3) pluralization, (4) opting out. Using these strategies older participants were able to incrementally change the medical field by shifting the focus to quality of life and welfare. We conclude that it is by definition impossible to ‘exclude exclusion’ at the start of care improvement programmes. It is only in the many pragmatic and mundane choices of ‘doing participation’ that more inclusive engagement can be realized.     

Women's experiences with HIV-related stigma from health care providers in Lima,Peru: “I would rather die than go back for care”

In Peru, HIV/AIDS is increasing among heterosexual women. In this qualitative study researchers examined HIV-related stigma among 14 women in Lima, Peru, who were HIV positive and at least 18 years of age. Data were analyzed using thematic analysis and indicated that women experienced stigma from health care providers. Two broad themes emerged from the data: forms of stigma and response to stigma. Within these themes, subthemes included maltreatment during care, neglect of patients' rights to confidentiality and privacy, and the process of women speaking out. Stigma from health care providers had a long-term, negative impact on women's willingness to seek treatment. Future stigma reduction initiatives, on a global level, should include health care workers.     

‘Exotic no more’: Tuberculosis,public debt and global health in Berlin

ABSTRACT

Geographical divisions between North and South are coming increasingly undone in the field of global health. Settings in the global North, such as Berlin, are becoming linked up to those in the global South in manifold ways. In this article, I show through discourse analysis and ethnographic research how tuberculosis and its meanings have been transfigured in Western Europe through the worldwide circulation of the disease and its definition as a global health epidemic returning to the North from the South through global migration routes. I then draw attention to the ways in which public health professionals in Berlin make sense of locally implemented economic processes of debt and austerity that have been in effect since the early 2000s. Such processes of indebtedness and privatisation render the strong public health infrastructures that characterise the global North increasingly fragile, and are comparable to the structural adjustment policies that have been imposed upon countries in the global South. I argue that economic processes of austerity in Berlin complement the meaning of TB as an immigrants’ disease, while older meanings of TB as a disease of poverty resurface.     

‘I won’t be able to go home being pregnant’: sex work and pregnancy in Dhaka,Bangladesh

Sex workers report high rates of unintended pregnancy that are inconsistent with widespread reports of condom use. Greater understanding of the implications of an unintended pregnancy and barriers to contraceptive use is needed to better meet the broader sexual and reproductive health needs of this population. We conducted in-depth interviews with 20 women sex workers in Dhaka, Bangladesh. Findings reveal that most women are trying to conform to societal norms and protect their reputations. They fear pregnancy would reveal that they are having unsanctioned sex and that they are sex workers. This could lead to ostracism from families and society, resulting in homelessness and abandonment by partners. Pregnancy may affect a sex worker’s ability to work and leave her unable to meet financial obligations. All study participants were using condoms but most acknowledged they could not use them consistently. They had all tried other contraceptive methods, notably injectables and the pill, but some noted experience of side-effects, difficulties in adherence and the desire to use other methods. Understanding the context of sex workers’ lives is an important step in informing stakeholders about the range of services needed to improve their sexual and reproductive health.     

‘As prostitutes,we control our bodies’: perceptions of health and body in the lives of establishment-based female sex workers in Tijuana,Mexico

Many studies of female sex work focus on HIV and other sexually transmitted infections because sex workers are considered bridges between high-risk and low-risk populations. The voices of female sex workers as they pertain to health issues are often lacking in the literature. This paper offers a feminist constructivist grounded theory study with establishment-based female sex workers in Tijuana, Mexico. Analyses of interviews with 20 women reveal that they are aware of the impact of their work on their bodies, but conceptualise their health holistically and not just in terms of HIV. They emphasise that working in the sex industry has implications for sexual health, non-sexual physical health and mental health. The paper concludes that in order for public health interventions to have more sustainable impact on the lives of female sex workers, they should take into account the voices of the women, including how they define their health. The findings suggest that public health professionals need to be more aware that female sex workers have agency and a desire to control their health and their bodies.     

The trouble with ‘Categories’: Rethinking men who have sex with men,transgender and their equivalents in HIV prevention and health promotion

ABSTRACT

This double Special Issue of Global Public Health presents a collection of articles that seek more adequately to represent sexual and gender diversities and to begin to rethink the relationship to HIV prevention and health promotion – in both the resource rich nations of the global North, as well as in the more resource constrained nations of the global South. Reckoning with the reality that today the global response to HIV has failed to respond to the needs of gay, bisexual and other men who have sex with men, and transgender persons, we turn our attention to processes and practices of categorisation and classification, and the entanglement of the multiple social worlds that constitute our understanding of each of these categories and people within the categories. Jointly, these articles provide critical perspectives on how defining and redefining categories may impact the conceptual frameworks and empirical evidence that inform global understandings of HIV infection, those communities most vulnerable, and our collective response to the evolving HIV epidemic.     

‘No one was there to care for us’: Ashodaya Samithi's community-led care and support for people living with HIV in Mysore,India

Under the umbrella of the Bill and Melinda Gates-funded HIV initiative in India, the Mysore-based sex workers’ (SWs) collective Ashodaya Samithi focused on improving its members’ living and working conditions through community-led structural interventions, including community mobilisation, advocacy, peer-led support, and health promotional activities. Based on four months of ethnographic fieldwork, this article examines the care and support activities of one of its sub-wings, Ashraya, which specifically focuses on people living with HIV and AIDS (PLHIV). We first discuss the stigma-related perceptions and experiences of participants in relation to health-care settings and work environment, families and communities, and within varied HIV support networks. We then explore how Ashraya's community-led interventions attempt to challenge the structural forces feeding on and creating stigma. We argue that the current policy focus on the involvement of SWs’ collectives in sexually transmitted infection (STI) prevention in India is rather limited and should be expanded along the continuum of care and support offered to PLHIV. As suggested in this paper, SWs’ organisations may have greater potential to contribute to more than STI prevention work, both within and outside their communities, than currently recognised.     

‘If she gave birth to a healthy child,then she may forget about her own health’: Postpartum engagement in HIV care and treatment among women living with HIV in Russia

There is a dearth of information about the factors influencing postpartum engagement in HIV treatment and care in Russia, a country with an expanding HIV epidemic and poor treatment coverage. The goal of our community-based study was to identify and explore the factors influencing engagement in care after pregnancy. We conducted in-depth interviews with 50 women living with HIV who had recently given birth, and with 20 health care and social service providers in two locations: a large metropolitan city (St. Petersburg) and a semi-urban town near the Ural Mountains. Thematic analysis led us to identify the following themes in regard to factors influencing postpartum engagement in care: feeling overwhelmed with caring for an infant; sense of responsibility for child’s health and well-being; misinformation and AIDS denialism; HIV-related stigma and fear; benefits versus side-effects of ART; professional and personal support; drug and alcohol use; and structural factors. Structural factors include poverty, continued provision of ART after pregnancy, dosage, obtaining necessary documents, and distance to clinic. These findings are important to consider in developing much-needed interventions to promote women’s longer-term engagement in HIV care and treatment in Russia.     

‘I am your son,mother’: severe dementia and duties to visit parents who can’t recognise you

Medicine, Health Care and Philosophy - It is commonly assumed that many, if not most, adult children have moral duties to visit their parents when they can do so at reasonable cost. However,...