Experiences and implications of smartphone apps for depression and anxiety.

Apps on smartphones are increasingly used for self-care for depression and anxiety, yet how and why they are accessed, and their social effects, remain under-investigated. Sociologists have begun to theorise how these technologies affect and relate; crucial questions for a contemporary sociology of health. This study seeks to contribute to our conceptualisation of how digital health technologies are implicated in health by investigating the motivations, experiences and relations of people using mobile apps for depression or anxiety. We interviewed 14 individuals living in England with a diagnosis of depression or an anxiety disorder, who used smartphone apps as part of self-care. Analysis followed a thematic approach. Three themes were identified. Apps exist within relational contexts - alongside smartphones, beliefs about mental health and other support - which shape app use and lead to an imprecise, casual approach. People engage with apps in a straightforward and uncomplicated manner, leading to immediate symptomatic alleviation, but to limited longer term benefit. The contradiction between the apps' promise as tools of individual empowerment, with their ability to promote responsibilising frameworks that restrain users' reflexivity, is central to their implications. Apps can thus contribute to isolation from interpersonal support and promote reductionist biomedical conceptualisations of mental ill health.

'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.

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.

'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.

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.

Understanding the relationship between couple dynamics and engagement with HIV care services: insights from a qualitative study in Eastern and Southern Africa.

OBJECTIVE: To explore the interplay between couple dynamics and the engagement of people living with HIV (PLHIV) with HIV care and treatment services in three health and demographic surveillance sites in Tanzania, Malawi and South Africa. METHODS: A qualitative study was conducted involving 107 in-depth interviews with PLHIV with a range of HIV care and treatment histories, including current users of HIV clinics, and people not enrolled in HIV care. Interviews explored experiences of living with HIV and how and why they chose to engage or not with HIV services. Thematic analysis was conducted with the aid of NVivo 10. RESULTS: We found an interplay between couple dynamics and HIV care and treatment-seeking behaviour in Tanzania, Malawi and South Africa. Being in a relationship impacted on the level and type of engagement with HIV services in multiple ways. In some instances, couples living with HIV supported each other which improved their engagement with care and strengthened their relationships. The desire to fulfil societal expectations and attract a new partner, or have a baby with a new partner, or to receive emotional or financial support, strengthened on-going engagement with HIV care and treatment. However, fear of blame, abandonment or abuse resulted in unwillingness to disclose and often led to disputes or discord between couples. There was little evidence of intracouple understanding of each other's lived experiences with HIV, and we found that couples rarely interacted with the formal health system together. CONCLUSIONS: Couple dynamics influenced engagement with HIV testing, care and treatment for both partners through a myriad of pathways. Couple-friendly approaches to HIV care and treatment are needed that move beyond individualised care and which recognise partner roles in HIV care engagement.

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.

Tensions in relation: How peer support is experienced and received in a hepatitis C treatment intervention.

BACKGROUND: Peer support and involvement is recognised as a vital component of hepatitis C (HCV) treatment provision for marginalised populations, such as people who inject drugs (PWID). Developments in HCV treatments enable increased provision in community settings - expanding the possibilities for meaningful peer involvement in HCV treatment plans. To date, HCV peer support has generally been viewed as a positive intervention, with little critical reflection on the ways social structures, policies, health and drug services and social identity impact on how peer support is experienced and received. METHODS: We report on the qualitative component of a UK-based intervention designed to increase HCV diagnosis and treatment in primary care and drug treatment settings. Data were collected between 2014 and 2016. Pre-intervention, a total of 35 PWID clients took part in nine in-depth interviews and four focus groups. In addition, 22 drug services and intervention providers took part in two focus groups and nine interviews. Post-intervention, one focus group and eight interviews were conducted with 13 PWID clients, and four focus groups and ten interviews were conducted with 26 drug services and intervention providers. Our data generation and thematic analysis focused on the peer education and buddy support component of the intervention. RESULTS: Participants had common expectations of the peer role (to 'just be there') and its occupants' attributes (empathy, trustworthy, etc.). However, in practice, peers faced constraints on realising these expectations. A 'recovery' dominated drug treatment ethos in the UK appeared to influence the selection of 'recovery champions' as peers for the intervention. This created tensions in relations with clients, particularly when risk-adverse discourses were internalised by the peers. Peers were poorly integrated and supported within the service, affecting opportunities to relate and build trust with clients. Thus, the scope for peer support to impact on the nature and extent of clients' testing and treatment for HCV was limited. CONCLUSION: The efficacy of peer involvement can be constrained by organisational structures and boundaries - especially regarding who is deemed to be 'a peer'. Peer programmes take time and care to implement and weave into wider recovery and harm reduction frameworks.

Stigma- and non-stigma-related treatment barriers to mental healthcare reported by service users and caregivers.

Delayed treatment seeking for people experiencing symptoms of mental illness is common despite available mental healthcare. Poor outcomes are associated with untreated mental illness and caregivers may eventually need to seek help on the service user's behalf. More attention has recently focused on the role of stigma in delayed treatment seeking. This study aimed to establish the frequency of stigma- and non-stigma-related treatment barriers reported by 202 service users and 80 caregivers; to compare treatment barriers reported by service users and caregivers; and to investigate demographic predictors of reporting stigma-related treatment barriers. The profile of treatment barriers differed between service users and caregivers. Service users were more likely to report stigma-related treatment barriers than caregivers across all stigma-related items. Service users who were female, had a diagnosis of schizophrenia or with GCSEs (UK qualifications usually obtained at age 16) were significantly more likely to report stigma-related treatment barriers. Caregivers who were female or of Black ethnicities were significantly more likely to report stigma-related treatment barriers. Multifaceted approaches are needed to reduce barriers to treatment seeking for both service users and caregivers, with anti-stigma interventions being of particular importance for the former group.

Exploring stigmatisation among people diagnosed with either bipolar disorder or borderline personality disorder: a critical realist analysis.

This study explores experiences of stigma and discrimination amongst people diagnosed with bipolar disorder (BD) or borderline personality disorder (BPD). Inspired by Margaret Archer's morphogenetic sequence and the ontological depth of critical realism, a temporal framework for stigmatisation, incorporating structure and agency, is developed and used to situate these experiences. A literature review found very little existing research on the subjective experience of stigma amongst these diagnostic groups. Indeed, most mental illness stigma research is quantitative and focussed on schizophrenia and depression. In-depth interviews were conducted with twenty-nine people diagnosed with BD or BPD, along with five 'friendship' mini-focus groups within the UK. Participants were recruited via charities and participant networking. Using thematic analysis, along with abductive and retroductive inference, experiences and anticipation of stigma and discrimination for participants with one of the two diagnoses in various contexts of social interaction were found to coincide with 'four faces' of oppression: cultural imperialism (pathologisation, normalisation and stereotyping), powerlessness, marginalisation and violence. Such experiences implied a range of antecedent social and cultural structures. Implications for the stigma concept are discussed.