Journal Article > ResearchFull Text
PLOS One. 2014 September 24; Volume 9 (Issue 9); DOI:10.1371/journal.pone.0108591
Horter SCB, Stringer B, Venis S, du Cros PAK
PLOS One. 2014 September 24; Volume 9 (Issue 9); DOI:10.1371/journal.pone.0108591
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.
Journal Article > ResearchFull Text
Trials. 2021 December 4; Volume 22; 881 .; DOI:10.1186/s13063-021-05850-0
Wharton-Smith A, Horter SCB, Douch E, Gray NSB, James N, et al.
Trials. 2021 December 4; Volume 22; 881 .; DOI:10.1186/s13063-021-05850-0
BACKGROUND
Addressing the global burden of multidrug-resistant tuberculosis (MDR-TB) requires identification of shorter, less toxic treatment regimens. Médecins Sans Frontières (MSF) is currently conducting a phase II/III randomised controlled clinical trial, to find more effective, shorter and tolerable treatments for people with MDR-TB. Recruitment to the trial in Uzbekistan has been slower than expected; we aimed to study patient and health worker experiences of the trial, examining potential factors perceived to impede and facilitate trial recruitment, as well as general perceptions of clinical research in this context.
METHODS
We conducted a qualitative study using maximum variation, purposive sampling of participants. We carried out in-depth interviews (IDIs) and focus group discussions (FGDs) guided by semi-structured topic guides. In December 2019 and January 2020, 26 interviews were conducted with patients, Ministry of Health (MoH) and MSF staff and trial health workers, to explore challenges and barriers to patient recruitment as well as perceptions of the trial and research in general. Preliminary findings from the interviews informed three subsequent focus group discussions held with patients, nurses and counsellors. Focus groups adopted a person-centred design, brainstorming potential solutions to problems and barriers. Interviews and FGDs were audio recorded, translated and transcribed verbatim. Thematic analysis, drawing on constant comparison, was used to analyse the data.
RESULTS
Health system contexts may compete with new approaches especially when legislative health regulations or policy around treatment is ingrained in staff beliefs, perceptions and practice, which can undermine clinical trial recruitment. Trust plays a significant role in how patients engage with the trial. Decision-making processes are dynamic and associated with relationship to diagnosis, assimilation of information, previous knowledge or experience and influence of peers and close relations.
CONCLUSIONS
This qualitative analysis highlights ways in which insights developed together with patients and healthcare workers might inform approaches towards improved recruitment into trials, with the overall objective of delivering evidence for better treatments.
Addressing the global burden of multidrug-resistant tuberculosis (MDR-TB) requires identification of shorter, less toxic treatment regimens. Médecins Sans Frontières (MSF) is currently conducting a phase II/III randomised controlled clinical trial, to find more effective, shorter and tolerable treatments for people with MDR-TB. Recruitment to the trial in Uzbekistan has been slower than expected; we aimed to study patient and health worker experiences of the trial, examining potential factors perceived to impede and facilitate trial recruitment, as well as general perceptions of clinical research in this context.
METHODS
We conducted a qualitative study using maximum variation, purposive sampling of participants. We carried out in-depth interviews (IDIs) and focus group discussions (FGDs) guided by semi-structured topic guides. In December 2019 and January 2020, 26 interviews were conducted with patients, Ministry of Health (MoH) and MSF staff and trial health workers, to explore challenges and barriers to patient recruitment as well as perceptions of the trial and research in general. Preliminary findings from the interviews informed three subsequent focus group discussions held with patients, nurses and counsellors. Focus groups adopted a person-centred design, brainstorming potential solutions to problems and barriers. Interviews and FGDs were audio recorded, translated and transcribed verbatim. Thematic analysis, drawing on constant comparison, was used to analyse the data.
RESULTS
Health system contexts may compete with new approaches especially when legislative health regulations or policy around treatment is ingrained in staff beliefs, perceptions and practice, which can undermine clinical trial recruitment. Trust plays a significant role in how patients engage with the trial. Decision-making processes are dynamic and associated with relationship to diagnosis, assimilation of information, previous knowledge or experience and influence of peers and close relations.
CONCLUSIONS
This qualitative analysis highlights ways in which insights developed together with patients and healthcare workers might inform approaches towards improved recruitment into trials, with the overall objective of delivering evidence for better treatments.
Journal Article > ResearchFull Text
BMC Infect Dis. 2020 September 16; Volume 20 (Issue 1); DOI:10.1186/s12879-020-05407-7
Horter SCB, Stringer B, Gray NSB, Parpieva N, Safaev K, et al.
BMC Infect Dis. 2020 September 16; Volume 20 (Issue 1); DOI:10.1186/s12879-020-05407-7
Introduction: Person-centred care, an internationally recognised priority, describes the involvement of people in their care and treatment decisions, and the consideration of their needs and priorities within service delivery. Clarity is required regarding how it may be implemented in practice within different contexts. The standard multi-drug resistant tuberculosis (MDR-TB) treatment regimen is lengthy, toxic and insufficiently effective. 2019 World Health Organisation guidelines include a shorter (9-11-month) regimen and recommend that people with MDR-TB be involved in the choice of treatment option. We examine the perspectives and experiences of people with MDR-TB and health-care workers (HCW) regarding person-centred care in an MDR-TB programme in Karakalpakstan, Uzbekistan, run by Médecins Sans Frontières and the Ministry of Health.
Methods: A qualitative study comprising 48 interviews with 24 people with MDR-TB and 20 HCW was conducted in June-July 2019. Participants were recruited purposively to include a range of treatment-taking experiences and professional positions. Interview data were analysed thematically using coding to identify emerging patterns, concepts, and categories relating to person-centred care, with Nvivo12.
Results: People with MDR-TB were unfamiliar with shared decision-making and felt uncomfortable taking responsibility for their treatment choice. HCW were viewed as having greater knowledge and expertise, and patients trusted HCW to act in their best interests, deferring the choice of appropriate treatment course to them. HCW had concerns about involving people in treatment choices, preferring that doctors made decisions. People with MDR-TB wanted to be involved in discussions about their treatment, and have their preference sought, and were comfortable choosing whether treatment was ambulatory or hospital-based. Participants felt it important that people with MDR-TB had knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership for treatment. Involving people in their care was said to motivate sustained treatment-taking, and it appeared important to have evidence of treatment need and effect.
Conclusions: There is a preference for doctors choosing the treatment regimen, linked to shared decision-making unfamiliarity and practitioner-patient knowledge imbalance. Involving people in their care, through discussions, information, and preference-seeking could foster ownership and self-responsibility, supporting sustained engagement with treatment.
Methods: A qualitative study comprising 48 interviews with 24 people with MDR-TB and 20 HCW was conducted in June-July 2019. Participants were recruited purposively to include a range of treatment-taking experiences and professional positions. Interview data were analysed thematically using coding to identify emerging patterns, concepts, and categories relating to person-centred care, with Nvivo12.
Results: People with MDR-TB were unfamiliar with shared decision-making and felt uncomfortable taking responsibility for their treatment choice. HCW were viewed as having greater knowledge and expertise, and patients trusted HCW to act in their best interests, deferring the choice of appropriate treatment course to them. HCW had concerns about involving people in treatment choices, preferring that doctors made decisions. People with MDR-TB wanted to be involved in discussions about their treatment, and have their preference sought, and were comfortable choosing whether treatment was ambulatory or hospital-based. Participants felt it important that people with MDR-TB had knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership for treatment. Involving people in their care was said to motivate sustained treatment-taking, and it appeared important to have evidence of treatment need and effect.
Conclusions: There is a preference for doctors choosing the treatment regimen, linked to shared decision-making unfamiliarity and practitioner-patient knowledge imbalance. Involving people in their care, through discussions, information, and preference-seeking could foster ownership and self-responsibility, supporting sustained engagement with treatment.
Conference Material > Slide Presentation
Horter SCB
MSF Scientific Days International 2020: Research. 2020 May 13; DOI:10.7490/f1000research.1117904.1
Conference Material > Video
Horter SCB
MSF Scientific Days International 2020: Research. 2020 May 13
Conference Material > Abstract
Horter SCB, Stringer B, Gray NSB, Parpieva N, Tigay Z, et al.
MSF Scientific Days International 2020: Research. 2020 May 20
INTRODUCTION
Person-centred care (PCC) is an internationally recognised priority, and a key underlying principle within MSF projects. PCC ensures that people are involved in their care and treatment decisions, and considers individuals' needs and priorities within service delivery. Clarity is required regarding how this may be implemented within different contexts. Multidrug-resistant tuberculosis (MDR-TB) treatment is lengthy, toxic and insufficiently effective, with recent developments changing the treatment landscape. WHO’s 2019 treatment guidelines include a shorter, 9-11 month-long treatment regimen, and recommends that people with MDR-TB should be involved in the decision around treatment option. We examine what PCC can look like in practice, through the perspectives and experiences of people with MDR-TB and health care workers (HCW) in Karakalpakstan, Uzbekistan.
METHODS
We carried out a qualitative study, comprising 48 interviews with people with MDR-TB (n=24; including repeat interviews with three participants) and healthcare workers (n=20), in Karakalpakstan in June-July 2019. In this setting, MSF and the Ministry of Health collaboratively have provided TB care since 1998. Participants were recruited purposively, to include a range of treatment-taking experiences and professional positions. Interview data were analysed thematically, using coding to identify emerging patterns, concepts and categories relating to person-centred care, with Nvivo12 (QSR International, Melbourne, Australia).
ETHICS
This study was approved by the ethics committees of Uzbekistan and the MSF Ethics Review Board.
RESULTS
People with MDR-TB were unfamiliar with shared decision-making, and felt uncomfortable taking responsibility for their treatment choice. HCW were viewed as having greater knowledge and expertise, and patients trusted HCW to act in their best interests, deferring to them to choose the appropriate treatment. HCW distrusted the effectiveness and appropriateness of the shorter treatment regimen, which may influence who is offered this option. Additionally, HCW had concerns about involving people in treatment choices, preferring that the doctor decide. However, people with MDR-TB wanted to be involved in discussions about their treatment, to have their preference sought, and were comfortable choosing the treatment location, whether ambulatory or hospital-based. Participants felt it important that people with MDR-TB have increased knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership of treatment. Involving people in their care was said to motivate sustained treatment-taking, which some felt directly observed treatment (DOT) delivery could undermine.
CONCLUSIONS
There was a preference for doctors choosing the treatment regimen, linked to unfamiliarity with shared decision-making and an imbalance between the perceived knowledge base of practitioners and patients. Involving people in their care, through discussions, information, and preference seeking could foster better ownership and self-responsibility, supporting sustained engagement with treatment, which DOT may contradict. These findings are important with MSF operations working to achieve PCC in practice, highlighting the need for approaches that are context specific and adapted to individuals’ preferences. Programmes should consider more person-centred approaches to treatment delivery, such as community or family DOT.
CONFLICTS OF INTEREST
None declared
Person-centred care (PCC) is an internationally recognised priority, and a key underlying principle within MSF projects. PCC ensures that people are involved in their care and treatment decisions, and considers individuals' needs and priorities within service delivery. Clarity is required regarding how this may be implemented within different contexts. Multidrug-resistant tuberculosis (MDR-TB) treatment is lengthy, toxic and insufficiently effective, with recent developments changing the treatment landscape. WHO’s 2019 treatment guidelines include a shorter, 9-11 month-long treatment regimen, and recommends that people with MDR-TB should be involved in the decision around treatment option. We examine what PCC can look like in practice, through the perspectives and experiences of people with MDR-TB and health care workers (HCW) in Karakalpakstan, Uzbekistan.
METHODS
We carried out a qualitative study, comprising 48 interviews with people with MDR-TB (n=24; including repeat interviews with three participants) and healthcare workers (n=20), in Karakalpakstan in June-July 2019. In this setting, MSF and the Ministry of Health collaboratively have provided TB care since 1998. Participants were recruited purposively, to include a range of treatment-taking experiences and professional positions. Interview data were analysed thematically, using coding to identify emerging patterns, concepts and categories relating to person-centred care, with Nvivo12 (QSR International, Melbourne, Australia).
ETHICS
This study was approved by the ethics committees of Uzbekistan and the MSF Ethics Review Board.
RESULTS
People with MDR-TB were unfamiliar with shared decision-making, and felt uncomfortable taking responsibility for their treatment choice. HCW were viewed as having greater knowledge and expertise, and patients trusted HCW to act in their best interests, deferring to them to choose the appropriate treatment. HCW distrusted the effectiveness and appropriateness of the shorter treatment regimen, which may influence who is offered this option. Additionally, HCW had concerns about involving people in treatment choices, preferring that the doctor decide. However, people with MDR-TB wanted to be involved in discussions about their treatment, to have their preference sought, and were comfortable choosing the treatment location, whether ambulatory or hospital-based. Participants felt it important that people with MDR-TB have increased knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership of treatment. Involving people in their care was said to motivate sustained treatment-taking, which some felt directly observed treatment (DOT) delivery could undermine.
CONCLUSIONS
There was a preference for doctors choosing the treatment regimen, linked to unfamiliarity with shared decision-making and an imbalance between the perceived knowledge base of practitioners and patients. Involving people in their care, through discussions, information, and preference seeking could foster better ownership and self-responsibility, supporting sustained engagement with treatment, which DOT may contradict. These findings are important with MSF operations working to achieve PCC in practice, highlighting the need for approaches that are context specific and adapted to individuals’ preferences. Programmes should consider more person-centred approaches to treatment delivery, such as community or family DOT.
CONFLICTS OF INTEREST
None declared
Journal Article > ResearchFull Text
Med Anthropol. 2020 February 20; Volume 39 (Issue 8); 675-688.; DOI:10.1080/01459740.2020.1720981
Horter SCB, Seeley J, Bernays S, Kerschberger B, Lukhele N, et al.
Med Anthropol. 2020 February 20; Volume 39 (Issue 8); 675-688.; DOI:10.1080/01459740.2020.1720981
Treat-all recommends prompt treatment initiation for those diagnosed HIV positive, requiring adaptations to individuals' behavior and practice. Drawing on data from a longitudinal qualitative study in Eswatini, we examine the choice to initiate treatment when asymptomatic, the dissonance between the biomedical logic surrounding Treat-all and individuals' conceptions of treatment necessity, and the navigation over time of ongoing engagement with care. We reflect on the perspectives of healthcare workers, responsible for implementing Treat-all and holding a duty of care for their patients. We explore how the potentially differing needs and priorities of individuals and the public health agenda are navigated and reconciled. Rationalities regarding treatment-taking extend beyond the biomedical realm, requiring adjustments to sense of self and identity, and decision-making that is situated and socially embedded. Sense of choice and ownership for this process is important for individuals' engagement with treatment and care.
Journal Article > ResearchFull Text
BMC Health Serv Res. 2014 February 21; Volume 14 (Issue 1); DOI:10.1186/1472-6963-14-81
Horter SCB, Stringer B, Reynolds L, Shoaib M, Kasozi S, et al.
BMC Health Serv Res. 2014 February 21; Volume 14 (Issue 1); DOI:10.1186/1472-6963-14-81
Ambulatory, 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. Medecins Sans Frontieres (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.
Protocol > Research Study
Horter SCB
2014 September 1
Journal Article > ResearchFull Text
BMC Infect Dis. 2016 July 28; Volume 16; 362.; DOI:10.1186/s12879-016-1723-8
Horter SCB, Stringer B, Greig J, Amangeldiev A, Tillashaikhov M, et al.
BMC Infect Dis. 2016 July 28; Volume 16; 362.; DOI:10.1186/s12879-016-1723-8
BACKGROUND
Treatment 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.
METHODS
Participants 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.
RESULTS
Several 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.
CONCLUSIONS
Our 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.
Treatment 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.
METHODS
Participants 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.
RESULTS
Several 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.
CONCLUSIONS
Our 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.