A qualitative study of patients and healthcare workers' experiences and perceptions to inform a better understanding of gaps in care for pre-discharged tuberculosis patients in Cape Town, South Africa.

BACKGROUND: Many people diagnosed with Mycobacterium tuberculosis (TB) in tertiary and district hospitals in South Africa do not arrive at their primary care clinic for continued care after they are discharged from the hospital. This loss to follow up is a major, ongoing problem for public health in South Africa, and contributes to drug-resistant TB strains. The objective of this paper was to explore patients' experiences and perceptions of diagnosis and treatment before their discharge from hospital. We use a framework known as patient-centred care to illustrate how these patient narratives point to lapses in these principles within the hospital system, and to show how such lapses may contribute to loss to follow up and inconsistent TB care. METHODS: We employed a qualitative study using semi-structured interviews to investigate patient and healthcare workers' experiences and perceptions of TB care in two Western Cape hospitals. We purposefully sampled 17 patients, 10 healthcare workers, and two key informant policy makers, all of whom had relevant experiences and insights. Data collection was done between October 2015 and February 2017. Data were analysed using Miles and Huberman's qualitative analysis framework. RESULTS: Hospitals did not achieve patient-centred care. Newly diagnosed patients were provided with inadequate TB education, diseased-focused approaches were favoured over patient-focused approaches, and there was limited engagement with patients to understand their needs and feelings during the critical period between diagnosis and discharge. Consequently, some patients felt anxious prior to their discharge from hospital. Coupled with their overwhelming socio-economic barriers and complex family situations, some patients felt hopeless and powerless as they prepared for discharge. Finally, there was a lack of patient-provider partnership due to problems including healthcare workers' time constraints and heavy workloads, which detracted from a focus on patients' needs and feelings. CONCLUSIONS: Improving the three intersecting elements of patient-centred care (health education, engaging with patients' needs and feelings, and shared decision-making) has the potential to positively influence patients' continuity of care for TB in South Africa. It would be helpful to also proactively address how patients plan to stay connected to care, on treatment, and supported, in light of their family situation or socio-economic circumstances. Detailed and unique pre-discharge counselling for each patient may be valuable in this regard.

Experiences of HIV-positive postpartum women and health workers involved with community-based antiretroviral therapy adherence clubs in Cape Town, South Africa.

BACKGROUND: The rollout of universal, lifelong treatment for all HIV-positive pregnant and breastfeeding women ("Option B+") has rapidly increased the number of women initiating antiretroviral treatment (ART) and requiring ART care postpartum. In a pilot project in South Africa, eligible postpartum women were offered the choice of referral to the standard of care, a local primary health care clinic, or a community-based model of differentiated ART services, the adherence club (AC). ACs have typically enrolled only non-pregnant and non-postpartum adults; postpartum women had not previously been referred directly from antenatal care. There is little evidence regarding postpartum women's preferences for and experiences of differentiated models of care, or the capacity of this particular model to cater to their specific needs. This qualitative paper reports on feedback from both postpartum women and health workers who care for them on their respective experiences of the AC. METHODS: One-on-one in-depth qualitative interviews were conducted with 19 (23%) of the 84 postpartum women who selected the AC and were retained at approximately 12 months postpartum, and 9 health workers who staff the AC. Data were transcribed and thematically analysed using NVivo 11. RESULTS: Postpartum women's inclusion in the AC was acceptable for both participants and health workers. Health workers were welcoming of postpartum women but expressed concerns about prospects for longer term adherence and retention, and raised logistical issues they felt might compromise trust with AC members in general. CONCLUSIONS: Enrolling postpartum women in mixed groups with the general adult population is feasible and acceptable. Preliminary recommendations are offered and may assist in supporting the specific needs of postpartum women transitioning from antenatal ART care. TRIAL REGISTRATION: Number NCT02417675 clinicaltrials.gov/ct2/show/record/NCT02417675 (retrospective reg.).

'People don't understand what we go through!': Caregiver views on South Africa's care dependency grant.

Background: Caregivers are under enormous pressure in trying to provide for the needs of their children with disabilities in South Africa. The care dependency grant (CDG), an unconditional cash transfer, is the primary state-subsidised intervention for the social protection of low-income caregivers of children with disabilities. Objectives: The primary objective of this substudy, within a larger multistakeholder qualitative project, was to investigate caregiver perspectives on CDG assessment and application, their beliefs about the purpose of the CDG and how they actually used these funds. Methods: Data for this qualitative research included in-depth individual interviews and one focus group discussion. Six low-income caregivers who were current or previous CDG beneficiaries participated. Deductive thematic analysis was conducted using codes related to the objectives. Results: Access to the CDG was usually too late and over-complicated. Caregivers were grateful for the CDG but it was insufficient to cover the costs of care, in the context of high unemployment and weaknesses in complementary social services. Pressure on these caregivers was intensified by criticism in their social environments and a lack of respite care. Conclusion: Caregivers need service providers to be better trained and for systems of referral to available social services to be strengthened. The whole of society ought also to be targeted for increased social inclusion facilitated by improvements in understandings of the lived experience and cost of disability. Contribution: The rapid time from data collection to write-up of this study will aid in building the evidence base on the CDG, an urgent priority for South Africa's journey towards comprehensive social protection.

The Care Dependency Grant for children with disabilities in South Africa: perspectives from implementation officials.

For people with disabilities, appropriate social protection interventions can contribute to breaking the cyclical relationship between poverty and disability and may improve social inclusion. In South Africa, a national social assistance programme provides 'social grants' to individuals on the basis of poverty, age, or disability. These grants have been extensively studied but there has been little investigation into the Care Dependency Grant, designed to support the care of children with disabilities. These children consistently have far poorer outcomes on key metrics for wellbeing, health, and education than their non-disabled peers. More attention ought to be focused on uplifting this profoundly marginalised population. We present initial findings from interviews with officials at the South African Social Security Agency, the country's grants implementation agency. These narratives add weight to the growing local and international consensus that complementary interventions and effective intersectoral collaboration may greatly enhance the impact of cash transfers.

'Five minutes earlier, you were giving hope': Reflections from interviews with doctors conducting assessments for South Africa's childhood disability Care Dependency Grant.

Background: In South Africa, medical doctors functionally decide whether a primary caregiver can access state-funded social assistance cash transfers ('social grants') for the care of their disabled child. In this paper, we unpack the subjective experiences of one group of doctors in the country's Western Cape province who are involved in conducting assessments for the care dependency grant, designed to support the cost of disabled children's specific needs. Methods: Individual in-depth interviews were conducted with five paediatric doctors who practice at three Cape Town public sector hospitals and regularly conduct assessments for the care dependency grant. Analysis was thematic and used deductive coding. Results: The doctors we interviewed were aware that care dependency grants were probably shared among household members but felt this was acceptable, as it contributed to the child's wellbeing. Doctors seemed to be applying nuanced, individualised assessments but often felt the need to simplify the documentation of these assessments, sometimes even bending the rules, to ensure access. Doctors' primary allegiance in these processes appeared to be to their patients. They identified more with their care responsibilities than their bureaucratic gate-keeping role but nonetheless felt the weight of their responsibility for decision-making, in the context of extremely strained public resources and a lack of guidance from the government's social assistance implementation agency. Conclusions: The hyperlocal practices and approaches that doctors described allows for perception of the messier - but also more accurate - details of the system that is actually in place. Doctors' narratives also reflect long-standing inattention to the 'trickle down' of guidelines to frontline implementers of disability-related grants. This cadre is a valuable but under-utilised source of evidence and information about the real-world functioning of disability-related grants administration and they should be actively included in implementation planning.

More Than Just Assistive Devices: How a South African Social Enterprise Supports an Environment of Inclusion.

Appropriate assistive technology has the potential to considerably enhance quality of life, access to health and education, and social and economic participation for people with disabilities. Most disabled people in the world live in low- and middle-income countries where access to assistive devices and other support is severely lacking. There is little evidence that describes contextually relevant approaches to meeting these needs, particularly in African countries. We provide a detailed description of a South African organisation which has manufactured mobility and seating devices for children with disabilities since 1992. The Shonaquip Social Enterprise (SSE) also trains and builds capacity among a wide range of stakeholders (caregivers, health workers, educators, government, and communities) to acknowledge and advocate for the wellbeing of disabled children and adults, and works closely with government to strengthen existing service provisions. Using examples from the SSE, we highlight a number of useful principles to consider when trying to provide for the needs of people with disabilities, particularly in low-resource settings. While access to assistive devices is important, devices have limited capacity to improve participation if the broader environment is overly restrictive and stigmatising. Improved access to devices ought to be situated within a range of broader efforts to increase the inclusion and participation of people with disabilities.

Reported infant feeding practices and contextual influences on breastfeeding: qualitative interviews with women registered to MomConnect in three South African provinces.

BACKGROUND: Global guidelines recommend exclusive breastfeeding (EBF) for the first 6 months of life. South African EBF rates have steadily increased but still only average 32% for infants below 6 months of age. Malnutrition and developmental delays continue to contribute substantially to the morbidity and mortality of South African children. MomConnect, a national mHealth messaging system used to send infant and maternal health messages during and after pregnancy, has a specific focus on improving rates of breastfeeding and has achieved high rates of population coverage. METHODS: For this qualitative study, we interviewed women who were registered to MomConnect to investigate their breastfeeding and other infant feeding practices, decision-making pre- and post-delivery, and the role of the health system, family members and the wider community in supporting or detracting from breastfeeding intentions. Data were collected from February-March 2018 in South Africa's KwaZulu-Natal, Free State and Gauteng provinces. Framework analysis was conducted to identify common themes. RESULTS: Most women interviewed had breastfed, including HIV-positive women. Even when women had delivered by caesarean section, they had usually been able to initiate breastfeeding a few hours after birth. Understandings of EBF varied in thoroughness and there was some confusion about the best way to cease breastfeeding. Most women felt well-equipped to make infant feeding decisions and to stick to their intentions, but returning to work or school sometimes prevented 6 months of EBF. Advice from the health system (both via clinics and MomConnect) was considered helpful and supportive in encouraging EBF to 6 months, although family influences could thwart these intentions, especially for younger women. Mothers reported a range of breastfeeding information sources that influenced their choices, including social media. CONCLUSIONS: Efforts to improve EBF rates must include consideration of the social and economic environment surrounding women. Interventions that focus only on improving women's knowledge are valuable but insufficient on their own. Attention should also be paid to infant behaviors, and how these affect women's breastfeeding choices. Finally, although there is strong local policy support for EBF, more rigorous implementation of these and other broader changes to create a more enabling structural environment ought to be prioritized.

"Contract to Volunteer": South African Community Health Worker Mobilization for Better Labor Protection.

In this paper, we explore the increasing activity around labor rights for South African community health workers (CHWs). Contextualizing this activity within broader policy and legal developments, we track the emergence of sporadic mobilizations for decent work (supported by local health activist organizations) and subsequently, the formation of a CHW union. The National Union of Care Workers of South Africa (NUCWOSA) was inaugurated in 2016, hoping to secure formal and secure employment through government and the consequent labor and occupational health protections. Various tensions were observed during fieldwork in the run up to NUCWOSA's formation and raise important questions about representation, legitimacy, and hierarchies of power. We close by offering suggestions for future research in this developing space.