"Let him die. He caused it": A qualitative study on cancer stigma in Tanzania.

Cancer stigma presents a critical barrier to care seeking, contributing to delayed presentation and poor cancer outcomes worldwide. The burden of cancer in Tanzania is on the rise, with cancer being the third-leading cause of death in the country. Despite rising incidence and poor outcomes of cancer, cancer-related stigma interventions have received low prioritization. There is a need for sound research that focuses on understanding attitudes driving stigma, its impact on care-seeking and treatment adherence, and intervention models to reduce stigma. We used a cross-sectional qualitative study design. We administered three open-ended qualitative questions to 140 adults newly diagnosed with cancer in Moshi, Tanzania. The questions explored common attitudes toward people with cancer, the perceived impact of cancer-related stigma on care engagement, and ideas for reducing cancer stigma. Patients were recruited during routine appointments at the Cancer Center at Kilimanjaro Christian Medical Center. Data were analyzed using a team-based, applied thematic approach and NVivo 12 software. All participants described stigma as a significant challenge for treatment and receiving support from their social networks. Perceptions of financial burden, misconceptions about cancer, such as the belief that it is contagious, and fear of death, were common attitudes driving cancer stigma. Most participants feared that symptoms would prevent them from being able to work and that the cost of cancer care would drive away loved ones. Stigma was not a ubiquitous response, as some participants reported increased care and social support from family members after a cancer diagnosis. Experiences of stigma contributed to feelings of shame, fear of burdening the family, reduced resources to access treatment, and disengagement from care. Common substitutes to medical therapies included religious interventions and traditional medicine, perceived as less expensive and less stigmatizing. Many participants felt they would benefit from improved financial support, professional counseling, and education for families and communities to reduce stigmatizing attitudes and enhance social support. There is a need for intervention studies focused on improving cancer literacy, community advocacy to reduce cancer stigma, and increasing emotional and practical support for people with cancer and their families. There is also a clear need for policy efforts to make cancer care more affordable and accessible to reduce the financial burden on patients and families.

Rapid ethnographic appraisal of community concepts of and responses to joint pain in Kilimanjaro, Tanzania.

INTRODUCTION: Musculoskeletal disorders, experienced as joint pain, are a significant global health problem, but little is known about how joint pain is categorised and understood in Tanzania. Understanding existing conceptualisations of and responses to joint pain is important to ensure both research and interventions are equitable and avoid biomedical imposition. METHODS: Rapid ethnographic appraisal was conducted in a periurban and rural community in Kilimanjaro, documenting language used to describe joint pain, ideas about causes, understandings of who experiences such pain, the impacts pain has and how people respond to it. We conducted 66 interviews with community leaders, traditional healers, community members and pharmacists.Photographs were taken and included in fieldnotes to supplement the interview data and develop thick descriptions. Data were analysed by constant comparison using QDA Miner software. RESULTS: Across the sample, dominant concepts of joint pain were named ugonjwa wa baridi, cold disease; ugonjwa wa uzee, old age disease; rimatizim, disease of the joints; and gauti, gout. Causes mentioned included exposure to the cold, old age, alcohol and red meat consumption, witchcraft, demons and injuries/falls. Age, gender and occupation were seen as important factors for developing joint pain. Perceived impacts of joint pain included loss of mobility, economic and family problems, developing new health conditions, death, reduction in sexual functioning and negative self-perceptions. Responses to joint pain blended biomedical treatments, herbal remedies, consultations with traditional healers and religious rituals. CONCLUSIONS: Conceptualisations of and responses to joint pain in the two communities were syncretic, mixing folk and biomedical practices. Narratives about who is affected by joint pain mirror emerging epidemiological findings, suggesting a strong 'lay epidemiology' in these communities. Anthropological methods can support the decolonisation of global health by decentring the imposition of English language biomedicine and pursuing synthetic, dignified languages of care.

Validation of a culturally sensitive, Swahili-translated instrument to assess suicide risk among adults living with HIV in Tanzania.

In Tanzania, there are high rates of suicidal thoughts and behavior among people living with HIV (PLWH), yet few instruments exist for effective screening and referral. To address this gap, we developed and validated Swahili translations of the Columbia Suicide Severity Rating Scale (C-SSRS) Screen Version and two accompanying scales assessing self-efficacy to avoid suicidal action and reasons for living. We administered a structured survey to 80 PLWH attending two HIV clinics in Moshi, Tanzania. Factor analysis of the items revealed four subscales: suicide intensity, self-efficacy to avoid suicide, fear and social concern about suicide, and family and spirituality deterrents to suicide. The area under the receiver operating curve showed only suicide intensity, and fear and social concern met the prespecified cutoff of ≥0.7 in accurately identifying patients with a plan and intent to act on suicidal thoughts. This study provides early evidence that brief screening of intensity of suicidality in the past month, assessed by the C-SSRS Screen Version, is a strong, resource-efficient strategy for identifying suicide risk in the Tanzanian setting. Patients who report little fear of dying and low concern about social perceptions of suicide may also be at increased risk.

Protocol for a pilot randomized controlled trial of a telehealth-delivered counseling intervention to reduce suicidality and improve HIV care engagement in Tanzania.

OBJECTIVE: Suicidal ideation is strikingly common among people living with HIV (PLWH) worldwide, leading to higher burden of disease, poor HIV care engagement, and loss of life. In low- and middle-income countries such as Tanzania, mental health resources are scarce, requiring innovative strategies for treatment. We describe the protocol for a clinical trial of a three-session telehealth counseling intervention to reduce suicidality and improve HIV care engagement in Tanzania. METHODS: In a pilot randomized controlled trial, we will assess the feasibility, acceptability, and potential efficacy of a new telehealth intervention, termed "IDEAS for Hope". A total of 60 PLWH will be enrolled from two HIV clinics in the Kilimanjaro region and connected to telehealth counsellors based at a large regional hospital. Participants will be ≥18 years old and speak either Kiswahili or English. Patient screening will occur during routine HIV clinical care to identify PLWH experiencing suicidal ideation. Baseline surveys will be administered upon enrollment and participants will be randomized 1:1 to receive either IDEAS for Hope or the comparison condition, a brief safety planning session. All participants will receive an additional referral for psychiatric treatment. Follow-up assessment will occur at three months. IDEAS for Hope is informed by a Motivational Interviewing-enhanced safety planning intervention (MI-SafeCope) and our formative work in Tanzania. The model consists of Four Pillars: living healthy with HIV, managing HIV stigma, seeking social support, and meeting basic needs. Together, these mechanisms serve as a foundation for developing a sense of safety and hope for the future. Outcome measures will include intervention feasibility, acceptability, participant suicidality, and HIV care engagement. SIGNIFICANCE: Innovative, telehealth-based counseling represents a promising treatment for suicidality among PLWH in low-resource settings. Results from this pilot trial will inform intervention refinement and parameter estimates for a future clinical trial powered to evaluate effectiveness.

Knowledge and misconceptions about epilepsy among people with epilepsy and their caregivers attending mental health clinics: A qualitative study in Taenia solium endemic pig-keeping communities in Tanzania.

OBJECTIVE: Taenia solium (T. solium) neurocysticercosis (NCC) affects the central nervous system and is associated with 30% of acquired epilepsy in some endemic areas. Epilepsy is a stigmatizing disease in many societies and people with epilepsy (PWE) and their families experience discrimination. This study aimed to explore the knowledge, perceptions, and experiences of epilepsy among PWE and their caregivers attending mental health clinics. METHODS: In T. solium endemic areas of Tanzania, PWE and their caregivers attending mental health clinics were identified and their informed consent was sought prior to study participation. In-depth interviews were conducted in Swahili language and analyzed thematically. The coding was undertaken by two independent researchers using NVivo (Version 12, QSR International). RESULTS: Thirty-eight participants were interviewed. Three themes were identified during the analysis, namely, knowledge about epilepsy; perception of epilepsy; and experience with epilepsy among PWE and their caregivers. Participants commonly defined epilepsy as a "falling disease," perceived to be caused by witchcraft, and were unaware of the association between T. solium and epilepsy. Stigmatization of epilepsy was reported as a problem. Reported treatment patterns after the initial onset of epilepsy varied widely; however, patients usually began treatment with traditional healing methods, and only later opted for biomedical treatment. Patients had generally poor adherence to antiseizure medication, which could be caused by inadequate knowledge or irregular supply. SIGNIFICANCE: Level of knowledge about epilepsy was low, and NCC was not mentioned as a cause of epilepsy among participants. Epilepsy was generally perceived to be the result of witchcraft, evil spirits, or curses. Health education is needed, including an explanation of the model of T. solium transmission and the insistence on hygiene measures. This could reduce the number of new infections with T. solium, improve access to prompt biomedical treatment, and improve the lives of PWE.

How public health crises expose systemic, day-to-day health inequalities in low- and-middle income countries: an example from East Africa.

BACKGROUND: The current Coronavirus disease pandemic reveals political and structural inequities of the world's poorest people who have little or no access to health care and yet the largest burdens of poor health. This is in parallel to a more persistent but silent global health crisis, antimicrobial resistance (AMR). We explore the fundamental challenges of health care in humans and animals in relation to AMR in Tanzania. METHODS: We conducted 57 individual interviews and focus groups with providers and patients in high, middle and lower tier health care facilities and communities across three regions of Tanzania between April 2019 and February 2020. We covered topics from health infrastructure and prescribing practices to health communication and patient experiences. RESULTS: Three interconnected themes emerged about systemic issues impacting health. First, there are challenges around infrastructure and availability of vital resources such as healthcare staff and supplies. Second, health outcomes are predicated on patient and provider access to services as well as social determinants of health. Third, health communication is critical in defining trusted sources of information, and narratives of blame emerge around health outcomes with the onus of responsibility for action falling on individuals. CONCLUSION: Entanglements between infrastructure, access and communication exist while constraints in the health system lead to poor health outcomes even in 'normal' circumstances. These are likely to be relevant across the globe and highly topical for addressing pressing global health challenges. Redressing structural health inequities can better equip countries and their citizens to not only face pandemics but also day-to-day health challenges.

Unlocking the health system barriers to maximise the uptake and utilisation of molecular diagnostics in low-income and middle-income country setting.

BACKGROUND: Early access to diagnosis is crucial for effective management of any disease including tuberculosis (TB). We investigated the barriers and opportunities to maximise uptake and utilisation of molecular diagnostics in routine healthcare settings. METHODS: Using the implementation of WHO approved TB diagnostics, Xpert Mycobacterium tuberculosis/rifampicin (MTB/RIF) and Line Probe Assay (LPA) as a benchmark, we evaluated the barriers and how they could be unlocked to maximise uptake and utilisation of molecular diagnostics. RESULTS: Health officers representing 190 districts/counties participated in the survey across Kenya, Tanzania and Uganda. The survey findings were corroborated by 145 healthcare facility (HCF) audits and 11 policy-maker engagement workshops. Xpert MTB/RIF coverage was 66%, falling behind microscopy and clinical diagnosis by 33% and 1%, respectively. Stratified by HCF type, Xpert MTB/RIF implementation was 56%, 96% and 95% at district, regional and national referral hospital levels. LPA coverage was 4%, 3% below culture across the three countries. Out of 111 HCFs with Xpert MTB/RIF, 37 (33%) used it to full capacity, performing ≥8 tests per day of which 51% of these were level five (zonal consultant and national referral) HCFs. Likewise, 75% of LPA was available at level five HCFs. Underutilisation of Xpert MTB/RIF and LPA was mainly attributed to inadequate-utilities, 26% and human resource, 22%. Underfinancing was the main reason underlying failure to acquire molecular diagnostics. Second to underfinancing was lack of awareness with 33% healthcare administrators and 49% practitioners were unaware of LPA as TB diagnostic. Creation of a national health tax and decentralising its management was proposed by policy-makers as a booster of domestic financing needed to increase access to diagnostics. CONCLUSION: Our findings suggest higher uptake and utilisation of molecular diagnostics at tertiary level HCFs contrary to the WHO recommendation. Country-led solutions are crucial for unlocking barriers to increase access to diagnostics.

Qualitative assessment of the impact of socioeconomic and cultural barriers on uptake and utilisation of tuberculosis diagnostic and treatment tools in East Africa: a cross-sectional study.

OBJECTIVES: Early diagnosis and timely treatment are key elements of a successful healthcare system. We assessed the role of socioeconomic and cultural norms in accelerating or decelerating uptake and utilisation of health technologies into policy and practice. SETTING: Secondary and tertiary level healthcare facilities (HCFs) in three East African countries. Level of HCF was selected based on the WHO recommendation for implantation of tuberculosis (TB) molecular diagnostics. PARTICIPANTS: Using implementation of TB diagnostics as a model, we purposively selected participants (TB patients, carers, survivors, healthcare practitioners, community members, opinion leaders and policy-makers) based on their role as stakeholders. In-depth interviews, key informant interviews and focus group discussions were held to collect the data between 2016 and 2018. The data were transcribed, translated, coded and analysed by thematic-content analysis. RESULTS: A total of 712 individuals participated in the study. Socioeconomic and cultural factors such as poverty, stigma and inadequate knowledge about causes of disease and available remedies, cultural beliefs were associated with low access and utilisation of diagnostic and treatment tools for TB. Poverty made people hesitate to seek formal healthcare resulting in delayed diagnosis and resorting to self-medication and cheap herbal alternatives. Fear of stigma made people hide their sickness and avoid reporting for follow-up treatment visits. Inadequate knowledge and beliefs were fertile ground for aggravated stigma and believing that diseases like TB are caused by spirits and thus cured by spiritual rituals or religious prayers. Cultural norms were also the basis of gender-based imbalance in accessing care, 'I could not go to hospital without my husband's permission', TB survivor. CONCLUSION: Our findings show that socioeconomic and cultural factors are substantial 'roadblocks' to accelerating the uptake and utilisation of diagnostic and treatment tools. Resolving these barriers should be given equal attention as is to health system barriers.

An In-Depth Examination of Reasons for Autopsy Acceptance and Refusal in Northern Tanzania.

Uncertainty about the causes of death (COD) in low- and middle-income countries (LMICs) has been recognized as a constraint to global health and development. Although complete diagnostic autopsy (CDA) is the best way to assess COD, it is uncommon in LMICs because of low investment priority and assumptions about poor acceptability. Social science research was conducted from May 2016 through July 2017 to examine issues related to acceptability of CDAs in northern Tanzania where autopsy was being offered in two referral hospitals to assess COD associated with febrile illness. Initial formative research entailed 29 key informant interviews, seven observations of burial practices, and four group discussions. In-depth interviews were conducted with families of deceased, including nine families that accepted and 11 families that refused CDA. The formative research identified concepts related to death, understandings of CDA, and cultural practices and psychosocial considerations associated with death that informed the authorization process. Most families who accepted CDA cited the desire to get clarity regarding the COD as a primary reason for acceptance. An unexpected finding was that CDA is perceived as a means to determine witchcraft involvement, a common explanation for COD and a common reason for postmortem acceptance. Death resulting from chronic illness or conditions presumed to have a clinical diagnosis were reasons for CDA to be viewed as unnecessary. The timing, way families were approached, and content of information shared during authorization influenced acceptance and refusal of CDA. Findings show that CDAs can be acceptable in settings where traditional disease models prevail.

"If You Have No Money, You Might Die": A Qualitative Study of Sociocultural and Health System Barriers to Care for Decedent Febrile Inpatients in Northern Tanzania.

Infectious diseases are a leading cause of mortality in low- and middle-income countries (LMICs) despite effective treatments. To study the sociocultural and health system barriers to care, we conducted a qualitative social autopsy study of patients who died from febrile illness in northern Tanzania. From December 2016 through July 2017, we conducted in-depth interviews in Arusha and Kilimanjaro regions with a purposive sample of 20 family members of patients who had died at two regional referral hospitals. Of the deceased patients included in this study, 14 (70%) were adults and 10 (50%) were female. Patients identified their religion as Catholic (12, 60%), Lutheran (six, 30%), and Muslim (two, 10%), and their ethnicity as Chagga (14, 70%) and Sambaa (two, 10%), among others. Family members reported both barriers to and facilitators of receiving health care. Barriers included a perceived lack of capacity of local health facilities, transportation barriers, and a lack of formal referrals to higher levels of care. Family members also reported the cost of health care as a barrier. However, one facilitator of care was access to financial resources via families' social networks-a phenomenon we refer to as social capital. Another facilitator of care was families' proactive engagement with the health system. Our results suggest that further investment in lower level health facilities may improve care-seeking and referral patterns and that future research into the role of social capital is needed to fully understand the effect of socioeconomic factors on healthcare utilization in LMICs.