Beverley Stringer

Home is where the patient is: a qualitative analysis of a patient-centred model of care for multi-drug resistant tuberculosis.

BackgroundAmbulatory, community-based care for multi-drug resistant tuberculosis (MDR-TB) has been found to be effective in multiple settings with high cure rates. However, little is known about patient preferences around models of MDR-TB care. Médecins Sans Frontières (MSF) has delivered home-based MDR-TB treatment in the rural Kitgum and Lamwo districts of northern Uganda since 2009 in collaboration with the Ministry of Health and the National TB and Leprosy Programme. We conducted a qualitative study examining the experience of patients and key stakeholders of home-based MDR-TB treatment.MethodsWe used semi-structured interviews and focus-group discussions to examine patients’ perceptions, views and experiences of home-based treatment and care for MDR-TB versus their perceptions of care in hospital. We identified how these perceptions interacted with those of their families and other stakeholders involved with TB. Participants were selected purposively following a stakeholder analysis. Sample size was determined by data saturation being reached within each identified homogenous category of respondents: health-care receiving, health-care providing and key informant. Iterative data collection and analysis enabled adaptation of topic guides and testing of emerging themes. The grounded theory method of analysis was applied, with data, codes and categories being continually compared and refined.ResultsSeveral key themes emerged: the perceived preference and acceptability of home-based treatment and care as a model of MDR-TB treatment by patients, family, community members and health-care workers; the fear of transmission of other infections within hospital settings; and the identification of MDR-TB developing through poor adherence to and inadequate treatment regimens for DS-TB.ConclusionsHome-based treatment and care was acceptable to patients, families, communities and health-care workers and was seen as preferable to hospital-based care by most respondents. Home-based care was perceived as safe, conducive to recovery, facilitating psychosocial support and allowing more free time and earning potential for patients and caretakers. These findings could contribute to development of an adaptation of treatment approach strategy at national level.

I can also serve as an inspiration: a qualitative study of the TB&Me blogging experience and its role in MDR-TB treatment.

Background In 2011, Médecins Sans Frontières (MSF) established a blogging project, “TB&Me,” to enable patients with multidrug-resistant tuberculosis (MDR-TB) to share their experiences. By September 2012, 13 MDR-TB patients had blogged, either directly or with assistance, from the UK, Australia, Philippines, Swaziland, Central African Republic, Uganda, South Africa, India, and Armenia. Due to the lack of research on the potential for social media to support MDR-TB treatment and the innovative nature of the blog, we decided to conduct a qualitative study to examine patient and staff experiences. Our aim was to identify potential risks and benefits associated with blogging to enable us to determine whether social media had a role to play in supporting patients with MDR-TB. Methods and Findings Participants were identified and selected purposively. TB&Me bloggers, project staff, MSF headquarters staff involved with TB and WHO European Region TB policy advisors were invited to participate in a semi-structured interview. Twenty interviews were conducted (five with bloggers). Data analysis drew upon principles of grounded theory, with constant comparison of data, cases and categories, and attention to deviant cases. We found that the TB&Me blog was associated with identified health benefits, with no reported instances of harm. There were three main findings: blogging was reported as useful for adherence to DR-TB treatment and supportive of the treatment-taking process by all bloggers and project staff; blogging provided support to patients (peer support, shared experience and reduction in isolation); and the blog was perceived as giving patients strength and voice. Conclusion The TB&Me blog was seen to be associated with positive identified health and emotional benefits. Component 5 of the Stop TB Global Plan highlights the importance of empowering TB patients and communities. Blogging could be a useful tool to help achieve that ambition.

Where there is hope: a qualitative study examining patients’ adherence to multi-drug resistant tuberculosis treatment in Karakalpakstan, Uzbekistan

BackgroundTreatment for multi-drug resistant tuberculosis (MDR-TB) is lengthy, has severe side effects, and raises adherence challenges. In the Médecins Sans Frontières (MSF) and Ministry of Health (MoH) programme in Karakalpakstan, Uzbekistan, a region with a high burden of MDR-TB, patient loss from treatment (LFT) remains high despite adherence support strategies. While certain factors associated with LFT have been identified, there is limited understanding of why some patients are able to adhere to treatment while others are not. We conducted a qualitative study to explore patients’ experiences with MDR-TB treatment, with the aim of providing insight into the barriers and enablers to treatment-taking to inform future strategies of adherence support.MethodsParticipants were purposively selected. Programme data were analysed to enable stratification of patients by adherence category, gender, and age. 52 in-depth interviews were conducted with MDR-TB patients (n = 35) and health practitioners (n = 12; MSF and MoH doctors, nurses, and counsellors), including five follow-up interviews. Interview notes, then transcripts, were analysed using coding to identify emerging patterns and themes. Manual analysis drew upon principles of grounded theory with constant comparison of codes and categories within and between cases to actively seek discrepancies and generate concepts from participant accounts. Ethics approval was received from the MoH of the Republic of Uzbekistan Ethics Committee and MSF Ethics Review Board.ResultsSeveral factors influenced adherence. Hope and high quality knowledge supported adherence; autonomy and control enabled optimal engagement with treatment-taking; and perceptions of the body, self, treatment, and disease influenced drug tolerance. As far as we are aware, the influence of patient autonomy and control on MDR-TB treatment-taking has not previously been described. In particular, the autonomy of married women around treatment-taking was potentially undermined through their societal position as daughter-in-law, compromising their ability to adhere to treatment. Patients’ engagement with and adherence to treatment could be hindered by hierarchical practitioner-patient relationships that displaced authority, ownership, and responsibility from the patient.ConclusionsOur findings reinforce the need for an individualised and holistic approach to adherence support with engagement of patients as active participants in their care who feel ownership and responsibility for their treatment.

‘When Ebola enters a home, a family, a community’: A qualitative study of population perspectives on Ebola control measures in rural and urban areas of Sierra Leone

Background During the West Africa Ebola outbreak, cultural practices have been described as hindering response efforts. The acceptance of control measures improved during the outbreak, but little is known about how and why this occurred. We conducted a qualitative study in two administrative districts of Sierra Leone to understand Ebola survivor, community, and health worker perspectives on Ebola control measures. We aimed to gain an understanding of community interactions with the Ebola response to inform future intervention strategies. Methodology/Principal findings Participants (25 survivors, 24 community members, and 16 health workers) were recruited purposively. A flexible participatory method gathered data through field notes and in-depth, topic-led interviews. These were analysed thematically with NVivo10© by open coding, constant comparison, and the principles of grounded theory. The primary theme, ‘when Ebola is real’, centred on denial, knowledge, and acceptance. Ebola was denied until it was experienced or observed first-hand and thus health promotion was more effective if undertaken by those directly exposed to Ebola rather than by mass media communication. Factors that enabled acceptance and engagement with control measures included: access to good, proximate care and prevention activities; seeing that people can survive infection; and the co-option of trusted or influential local leadership, with bylaws implemented by community leaders being strongly respected. All participants noted that dignity, respect, and compassion were key components of effective control measures. Conclusions Successful control approaches need strong community leadership, with the aim of achieving collective understanding between communities and health workers. Health promotion for communities at risk is best conducted through people who have had close interaction with or who have survived Ebola as opposed to reliance on broad mass communication strategies.

Anthropology in public health emergencies: what is anthropology good for?

Recent outbreaks of Ebola virus disease (2013–2016) and Zika virus (2015–2016) bring renewed recognition of the need to understand social pathways of disease transmission and barriers to care. Social scientists, anthropologists in particular, have been recognised as important players in disease outbreak response because of their ability to assess social, economic and political factors in local contexts. However, in emergency public health response, as with any interdisciplinary setting, different professions may disagree over methods, ethics and the nature of evidence itself. A disease outbreak is no place to begin to negotiate disciplinary differences. Given increasing demand for anthropologists to work alongside epidemiologists, clinicians and public health professionals in health crises, this paper gives a basic introduction to anthropological methods and seeks to bridge the gap in disciplinary expectations within emergencies. It asks: ‘What can anthropologists do in a public health crisis and how do they do it?’ It argues for an interdisciplinary conception of emergency and the recognition that social, psychological and institutional factors influence all aspects of care.

Diabetes Care in a Complex Humanitarian Emergency Setting: A Qualitative Evaluation

BackgroundEvidence is urgently needed from complex emergency settings to support efforts to respond to the increasing burden of diabetes mellitus (DM). We conducted a qualitative study of a new model of DM health care (Integrated Diabetic Clinic within an Outpatient Department [IDC-OPD]) implemented by Médecins Sans Frontières (MSF) in Mweso Hospital in eastern Democratic Republic of Congo (DRC). We aimed to explore patient and provider perspectives on the model in order to identify factors that may support or impede it.MethodsWe used focus group discussions (FGDs; two discussions, each with eight participants) and individual semi-structured qualitative interviews (seven patients and 10 staff) to explore experience of and perspectives on the IDC-OPD. Participants were recruited purposively to represent a range of DM disease severity and staff functions respectively, and to ensure the age and gender distribution was representative of the population of DM patients registered in the clinic. Data were coded in NVivo10© and analysed using an inductive thematic approach.ResultsThere appears to be little awareness surrounding DM in patient communities, resulting in delays presenting to hospital. Patients describe their first reactions to symptoms as fear and confusion, often assuming symptoms are of another disease (e.g. HIV/AIDS). They often express disbelief that they could have DM (e.g. stating DM is a ‘rich man’s disease’) and lack acceptance that there is no cure. Patients experienced difficulty travelling to appointments, exacerbated by flare-ups in the conflict. Providing psycho-social and sensitisation activities in a group setting appears to offer an opportunity for patients to support each other in their effort to adhere to drug treatment and follow-up appointments. All patients reported great difficulty in adhering to the recommended diet, which was viewed as unaffordable and unavailable, and fear that this would be the biggest obstacle to maintaining their drug treatment (as treatment must be taken with food).ConclusionOur findings emphasize the importance of community awareness of DM and the value of treatment support, including psychosocial and educational support to DM patients and their families, and culturally sensitive, low-cost dietary advice, to ensuring the adoption and maintenance of DM treatment.