'I am treated well if I adhere to my HIV medication':Putting patient-provider interactions in context through insights from qualitative research in five sub-Saharan African countries

Objectives The nature of patient-provider interactions and communication is widely documented to significantly impact on patient experiences, treatment adherence and health outcomes. Yet little is known about the broader contextual factors and dynamics that shape patient-provider interactions in high HIV prevalence and limited-resource settings. Drawing on qualitative research from five sub-Saharan African countries, we seek to unpack local dynamics that serve to hinder or facilitate productive patient-provider interactions. Methods This qualitative study, conducted in Kisumu (Kenya), Kisesa (Tanzania), Manicaland (Zimbabwe), Karonga (Malawi) and uMkhanyakude (South Africa), draws upon 278 in-depth interviews with purposively sampled people living with HIV with different diagnosis and treatment histories, 29 family members of people who died due to HIV and 38 HIV healthcare workers. Data were collected using topic guides that explored patient testing and antiretroviral therapy treatment journeys. Thematic analysis was conducted, aided by NVivo V.8.0 software. Results Our analysis revealed an array of inter-related contextual factors and power dynamics shaping patient-provider interactions. These included (1) participants' perceptions of roles and identities of 'self' and 'other'; (2) conformity or resistance to the 'rules of HIV service engagement' and a 'patient-persona'; (3) the influence of significant others' views on service provision; and (4) resources in health services. We observed that these four factors/dynamics were located in the wider context of conceptualisations of power, autonomy and structure. Conclusion Patient-provider interaction is complex, multidimensional and deeply embedded in wider social dynamics. Multiple contextual domains shape patient-provider interactions in the context of HIV in sub-Saharan Africa. Interventions to improve patient experiences and treatment adherence through enhanced interactions need to go beyond the existing focus on patient-provider communication strategies

'I am treated well if I adhere to my HIV medication': putting patient-provider interactions in context through insights from qualitative research in five sub-Saharan African countries.

OBJECTIVES: The nature of patient-provider interactions and communication is widely documented to significantly impact on patient experiences, treatment adherence and health outcomes. Yet little is known about the broader contextual factors and dynamics that shape patient-provider interactions in high HIV prevalence and limited-resource settings. Drawing on qualitative research from five sub-Saharan African countries, we seek to unpack local dynamics that serve to hinder or facilitate productive patient-provider interactions. METHODS: This qualitative study, conducted in Kisumu (Kenya), Kisesa (Tanzania), Manicaland (Zimbabwe), Karonga (Malawi) and uMkhanyakude (South Africa), draws upon 278 in-depth interviews with purposively sampled people living with HIV with different diagnosis and treatment histories, 29 family members of people who died due to HIV and 38 HIV healthcare workers. Data were collected using topic guides that explored patient testing and antiretroviral therapy treatment journeys. Thematic analysis was conducted, aided by NVivo V.8.0 software. RESULTS: Our analysis revealed an array of inter-related contextual factors and power dynamics shaping patient-provider interactions. These included (1) participants' perceptions of roles and identities of 'self' and 'other'; (2) conformity or resistance to the 'rules of HIV service engagement' and a 'patient-persona'; (3) the influence of significant others' views on service provision; and (4) resources in health services. We observed that these four factors/dynamics were located in the wider context of conceptualisations of power, autonomy and structure. CONCLUSION: Patient-provider interaction is complex, multidimensional and deeply embedded in wider social dynamics. Multiple contextual domains shape patient-provider interactions in the context of HIV in sub-Saharan Africa. Interventions to improve patient experiences and treatment adherence through enhanced interactions need to go beyond the existing focus on patient-provider communication strategies

Where are we now? A multicountry qualitative study to explore access to pre-antiretroviral care services: a precursor to antiretroviral therapy initiation.

OBJECTIVE: To explore barriers and facilitators to accessing postdiagnosis HIV care in five sub-Saharan African countries. METHODS: In-depth interviews were conducted with 77 people living with HIV (PLHIV) in pre-antiretroviral therapy care or not-yet-in care and 46 healthcare workers. Participants were purposely selected from health and demographic surveillance sites in Karonga (Malawi), Manicaland (Zimbabwe), uMkhanyakude (South Africa), Kisesa (Tanzania) and Rakai and Kyamulibwa (Uganda). Thematic content analysis was conducted, guided by the constructs of affordability, availability and acceptability of care.- RESULTS: Affordability: Transport and treatment costs were a barrier to HIV care, although some participants travelled to distant clinics to avoid being seen by people who knew them or for specific services. Broken equipment and drug stock-outs in local clinics could also necessitate travel to other facilities. Availability: Some facilities did not offer full HIV care, or only offered all services intermittently. PLHIV who frequently travelled complained that care was seldom available to them in places they visited. Acceptability: Severe pain or sickness was a key driver for accessing postdiagnosis care, whereas asymptomatic PLHIV often delayed care-seeking. A belief in witchcraft was a deterrent to accessing clinical care following diagnosis. Changing antiretroviral therapy guidelines generated uncertainty among PLHIV about when to start treatment and delayed postdiagnosis care. PLHIV reported that healthcare workers' knowledge, attitudes and behaviours, and their ability to impart health education, also influenced whether they accessed HIV care. CONCLUSION: Despite efforts to decentralise services over the past decade, many barriers to accessing HIV care persist. There is a need to increase sustained access to care for PLHIV not yet on treatment, with initiatives that encompass biomedical aspects of care alongside considerations for individual and collective challenges they faced. A failure to do so may undermine efforts to achieve universal access to antiretroviral therapy

'Side effects' are 'central effects' that challenge retention in HIV treatment programmes in six sub-Saharan African countries: a multicountry qualitative study.

OBJECTIVES: To explore the bodily and relational experience of taking antiretroviral therapy (ART) and the subsequent effect on retention in HIV care in six sub-Saharan African countries. METHODS: In-depth interviews were conducted with 130 people living with HIV (PLHIV) who had initiated ART, 38 PLHIV who were lost to follow-up and 53 healthcare workers (HCWs) in Kenya, Uganda, Tanzania, Malawi, Zimbabwe and South Africa. PLHIV were purposely selected to include a range of HIV treatment histories. Deductive and inductive analysis was guided by aspects of practice theory; retention in HIV care following ART initiation was the practice of interest. RESULTS: PLHIV who were engaged in HIV care took ART every day, attended clinic appointments and ate as well as possible. For PLHIV, biomedical markers acted as reassurance for their positive treatment progression. However, many described ART side effects ranging from dizziness to conditions severe enough to prevent them from leaving home or caring for themselves or others. In all settings, the primary concern of HCW was ensuring patients achieved viral suppression, with management of side effects seen as a lower priority. Where PLHIV tolerated side effects, they were deemed the lesser of two evils compared with their pre-ART illnesses. Participants who reported feeling well prior to starting ART were often less able to tolerate side effects, and in many cases these events triggered their disengagement from HIV care. CONCLUSIONS: Retention in ART care is rarely an outcome of rational decision-making, but the consequence of bodily and relational experiences. Initiatives to improve retention should consider how bodily experiences of PLHIV relate to the rest of their lives and how this can be respected and supported by service providers to subsequently improve retention in care

Using theories of practice to understand HIV-positive persons varied engagement with HIV services:A qualitative study in six sub-Saharan African countries

Objectives This article considers the potential of 'theories of practice' for studying and understanding varied (dis)engagement with HIV care and treatment services and begins to unpack the assemblage of elements and practices that shape the nature and duration of individuals' interactions with HIV services. Methods We obtained data from a multicountry qualitative study that explores the use of HIV care and treatment services, with a focus on examining the social organisation of engagement with care as a practice and as manifested in the lives of people living with HIV in sub-Saharan Africa. The dataset comprised of 356 interviews with participants from six countries. Results We noted fluctuating interactions with HIV services in all countries. In line with theories of practice, we found that such varied engagement can be explained by (1) the availability, absence and connections between requisite 'materialities' (eg, health infrastructure, medicines), 'competencies' (eg, knowing how to live with HIV) and 'meanings' (eg, trust in HIV services, stigma, normalisation of HIV) and (2) a host of other life practices, such as working or parenting. These dynamics either facilitated or inhibited engagement with HIV services and were intrinsically linked to the discursive, cultural, political and economic fabric of the participating countries. Conclusion Practice theory provides HIV researchers and practitioners with a useful vocabulary and analytical tools to understand and steer people's differentiated HIV service (dis)engagement. Our application of practice theory to engagement in HIV care, as experienced by HIV service users and providers in six sub-Saharan African countries, highlights the need for a practice-based approach in the delivery of differentiated and patient-centred HIV services

Using theories of practice to understand HIV-positive persons varied engagement with HIV services: a qualitative study in six Sub-Saharan African countries.

OBJECTIVES: This article considers the potential of 'theories of practice' for studying and understanding varied (dis)engagement with HIV care and treatment services and begins to unpack the assemblage of elements and practices that shape the nature and duration of individuals' interactions with HIV services. METHODS: We obtained data from a multicountry qualitative study that explores the use of HIV care and treatment services, with a focus on examining the social organisation of engagement with care as a practice and as manifested in the lives of people living with HIV in sub-Saharan Africa. The dataset comprised of 356 interviews with participants from six countries. RESULTS: We noted fluctuating interactions with HIV services in all countries. In line with theories of practice, we found that such varied engagement can be explained by (1) the availability, absence and connections between requisite 'materialities' (eg, health infrastructure, medicines), 'competencies' (eg, knowing how to live with HIV) and 'meanings' (eg, trust in HIV services, stigma, normalisation of HIV) and (2) a host of other life practices, such as working or parenting. These dynamics either facilitated or inhibited engagement with HIV services and were intrinsically linked to the discursive, cultural, political and economic fabric of the participating countries. CONCLUSION: Practice theory provides HIV researchers and practitioners with a useful vocabulary and analytical tools to understand and steer people's differentiated HIV service (dis)engagement. Our application of practice theory to engagement in HIV care, as experienced by HIV service users and providers in six sub-Saharan African countries, highlights the need for a practice-based approach in the delivery of differentiated and patient-centred HIV services

Traditional healers, faith healers and medical practitioners: the contribution of medical pluralism to bottlenecks along the cascade of care for HIV/AIDS in Eastern and Southern Africa.

OBJECTIVES: There are concerns that medical pluralism may delay patients' progression through the HIV cascade-of-care. However, the pathways of impact through which medical pluralism influence the care of people living with HIV (PLHIV) in African settings remain unclear. We sought to establish the manifestation of medical pluralism among PLHIV, and explore mechanisms through which medical pluralism contributes bottlenecks along the HIV care cascade. METHODS: We conducted a multicountry exploratory qualitative study in seven health and demographic surveillance sites in six eastern and southern African countries: Uganda, Kenya, Tanzania, Malawi, Zimbabwe and South Africa. We interviewed 258 PLHIV at different stages of the HIV cascade-of-care, 48 family members of deceased PLHIV and 53 HIV healthcare workers. Interviews were conducted using shared standardised topic guides, and data managed through NVIVO 8/10/11. We conducted a thematic analysis of healthcare pathways and bottlenecks related to medical pluralism. RESULTS: Medical pluralism, manifesting across traditional, faith-based and biomedical health-worlds, contributed to the care cascade bottlenecks for PLHIV through three pathways of impact. First, access to HIV treatment was delayed through the nature of health-related beliefs, knowledge and patient journeys. Second, HIV treatment was interrupted by availability of alternative options, perceived failed treatment and exploitation of PLHIV by opportunistic traders and healers. Lastly, the mixing of biomedical healthcare providers and treatment with traditional and faith-based options fuelled tensions driven by fear of drug-to-drug interactions and mistrust between providers operating in different health-worlds. CONCLUSION: Medical pluralism contributes to delays and interruptions of care along the HIV cascade, and mistrust between health providers. Region-wide interventions and policies are urgently needed in sub-Saharan Africa to minimise potential harm and consequences of medical pluralism for PLHIV. The role of sociocultural beliefs in mediating bottlenecks necessitate adoption of culture-sensitive approaches intervention designs and policy reforms appropriate to the context of sub-Saharan Africa

HIV testing experiences and their implications for patient engagement with HIV care and treatment on the eve of 'test and treat': findings from a multicountry qualitative study.

OBJECTIVE: In view of expanding 'test and treat' initiatives, we sought to elicit how the experience of HIV testing influenced subsequent engagement in HIV care among people diagnosed with HIV. METHODS: As part of a multisite qualitative study, we conducted in-depth interviews in Uganda, South Africa, Tanzania, Kenya, Malawi and Zimbabwe with 5-10 health workers and 28-59 people living with HIV, per country. Topic guides covered patient and provider experiences of HIV testing and treatment services. Themes were derived through deductive and inductive coding. RESULTS: Various practices and techniques were employed by health workers to increase HIV testing uptake in line with national policies, some of which affected patients' subsequent engagement with HIV services. Provider-initiated testing was generally appreciated, but rarely considered voluntary, with instances of coercion and testing without consent, which could lead to disengagement from care.Conflicting rationalities for HIV testing between health workers and their clients caused tensions that undermined engagement in HIV care among people living with HIV. Although many health workers helped clients to accept their diagnosis and engage in care, some delivered static, morally charged messages regarding sexual behaviours and expectations of clinic use which discouraged future care seeking. Repeat testing was commonly reported, reflecting patients' doubts over the accuracy of prior results and beliefs that antiretroviral therapy may cure HIV. Repeat testing provided an opportunity to develop familiarity with clinical procedures, address concerns about HIV services and build trust with health workers. CONCLUSION: The principles of consent and confidentiality that should underlie HIV testing and counselling practices may be modified or omitted by health workers to achieve perceived public health benefits and policy expectations. While such actions can increase HIV testing rates, they may also jeopardise efforts to connect people diagnosed with HIV to long-term care, and undermine the potential of test and treat interventions

The impact of home energy efficiency interventions and winter fuel payments on winter- and cold-related mortality and morbidity in England: a natural equipment mixed-methods study

Background England, and the UK more generally, has a large burden of winter- and cold-related mortality/morbidity in comparison with nearby countries in continental Europe. Improving the energy efficiency of the housing stock may help to reduce this, as well as being important for climate change and energy security objectives. Objectives To evaluate the impact of home energy efficiency (HEE) interventions on winter- and cold-related mortality/morbidity, including assessing the impact of winter fuel payments (WFPs) and fuel costs. Design A mixed-methods study – an epidemiological time-series analysis, an analysis of data on HEE interventions, the development and application of modelling methods including a multicriteria decision analysis and an in-depth interview study of householders. Setting England, UK. Participants The population of England. In-depth interviews were conducted with 12 households (2–4 participants each) and 41 individuals in three geographical regions. Interventions HEE interventions. Main outcome measures Mortality, morbidity and intervention-related changes to the home indoor environment. Data sources The Homes Energy Efficiency Database, mortality and hospital admissions data and weather (temperature) data. Results There has been a progressive decline in cold-related deaths since the mid-1970s. Since the introduction of WFPs, the gradient of association between winter cold and mortality [2.00%, 95% confidence interval (CI) 1.74% to 2.28%] per degree Celsius fall in temperature is somewhat weaker (i.e. that the population is less vulnerable to cold) than in earlier years (2.37%, 95% CI 0.22% to 2.53%). There is also evidence that years with above-average fuel costs were associated with higher vulnerability to outdoor cold. HEE measures installed in England in 2002–10 have had a relatively modest impact in improving the indoor environment. The gains in winter temperatures (around +0.09 °C on a day with maximum outdoor temperature of 5 °C) are associated with an estimated annual reduction of ≈280 cold-related deaths in England (an eventual maximum annual impact of 4000 life-years gained), but these impacts may be appreciably smaller than those of changes in indoor air quality. Modelling studies indicate the potential importance of the medium- and longer-term impacts that HEE measures have on health, which are not observable in short-term studies. They also suggest that HEE improvements of similar annualised cost to current WFPs would achieve greater improvements in health while reducing (rather than increasing) carbon dioxide emissions. In-depth interviews suggest four distinct householder framings of HEE measures (as home improvement, home maintenance, subsidised public goods and contributions to sustainability), which do not dovetail with current ‘consumerist’ national policy and may have implications for the uptake of HEE measures. Limitations The quantification of intervention impacts in this national study is reliant on various indirect/model-based assessments. Conclusions Larger-scale changes are required to the housing stock in England if the full potential benefits for improving health and for reaching increasingly important climate change mitigation targets are to be realised. Future work Studies based on data linkage at individual dwelling level to examine health impacts. There is a need for empirical assessment of HEE interventions on indoor air quality. Funding This project was funded by the National Institute for Health Research (NIHR) Public Health Research programme and will be published in full in Public Health Research; Vol. 6, No. 11. See the NIHR Journals Library website for further project information. </jats:sec