Journal Article > ResearchFull Text
Affilia
Affilia journal of women and social work. 2023 March 28; Volume 39 (Issue 1); 148-169.; DOI:10.1177/08861099231162582
Mahbub T, Mathur T, Isaakidis P, Daftary A
Affilia
Affilia journal of women and social work. 2023 March 28; Volume 39 (Issue 1); 148-169.; DOI:10.1177/08861099231162582
Stigma related to drug-resistant tuberculosis (DR-TB), one of the world's most severe infectious diseases, is a major barrier to TB elimination particularly for women living in settings of gender inequity. Drawing on the participatory action research (PAR) framework of photovoice, we explored lived experiences of DR-TB stigma among nine affected women in Mumbai, India. Consenting women took, shared, and contributed to the critical interpretation of 37 non-identifying images and associated narratives with one another and with PAR researchers. The study surfaced vivid, untold stories of trauma and life-altering encounters with enacted, anticipated, and internal stigma, that were characterized by loss (of self, voice, status, mobility), abuse (mental, social) and deep internal distress (shame, isolation, suffocation, peril). The study also revealed how stigmatized women found means to build resilience and resist the impacts of stigma. We further witnessed the building of their collective resilience through study participation. Photovoice proved to be a uniquely compelling method of data capture and interpretation, with potential to develop meaningful engagement and solidarity among women affected by DR-TB.
Journal Article > ReviewFull Text
Int J Tuberc Lung Dis. 2016 April 1; Volume 20 (Issue 4); DOI:10.5588/ijtld.15.0360
ODonnell MR, Daftary A, Frick M, Hirsch-Moverman Y, Amico KR, et al.
Int J Tuberc Lung Dis. 2016 April 1; Volume 20 (Issue 4); DOI:10.5588/ijtld.15.0360
Despite renewed focus on molecular tuberculosis (TB) diagnostics and new antimycobacterial agents, treatment outcomes for patients co-infected with drug-resistant TB and human immunodeficiency virus (HIV) remain dismal, in part due to lack of focus on medication adherence as part of a patient-centered continuum of care.
Journal Article > ResearchFull Text
PLOS One. 2016 March 9; Volume 11 (Issue 3); e0150849.; DOI:10.1371/journal.pone.0150849
Shringarpure KS, Isaakidis P, Sagili KD, Baxi RK, Das M, et al.
PLOS One. 2016 March 9; Volume 11 (Issue 3); e0150849.; DOI:10.1371/journal.pone.0150849
BACKGROUND
One-fifth of the patients on multidrug-resistant tuberculosis treatment at the Drug-Resistant-TB (DR-TB) Site in Gujarat are lost-to-follow-up(LFU).
OBJECTIVE
To understand patients' and providers' perspectives on reasons for LFU and their suggestions to improve retention-in-care.
DESIGN
Qualitative study conducted between December 2013-March 2014, including in-depth interviews with LFU patients and DOT-providers, and a focus group discussion with DR-TB site supervisors. A thematic-network analysis approach was utilised.
RESULTS
Three sub-themes emerged: (i) Struggle with prolonged treatment; (ii) Strive against stigma and toward support; (iii) Divergent perceptions and practices. Daily injections, pill burden, DOT, migratory work, social problems, prior TB treatment, and adverse drugs effects were reported as major barriers to treatment adherence and retention-in-care by patients and providers. Some providers felt that despite their best efforts, LFU patients remain. Patient movements between private practitioners and traditional healers further influenced LFU.
CONCLUSION
The study points to a need for repeated patient counselling and education, improved co-ordination between various tiers of providers engaged in DR-TB care, collaboration between the public, private and traditional practitioners, and promotion of social and economic support to help patients adhere to MDR-TB treatment and avoid LFU.
One-fifth of the patients on multidrug-resistant tuberculosis treatment at the Drug-Resistant-TB (DR-TB) Site in Gujarat are lost-to-follow-up(LFU).
OBJECTIVE
To understand patients' and providers' perspectives on reasons for LFU and their suggestions to improve retention-in-care.
DESIGN
Qualitative study conducted between December 2013-March 2014, including in-depth interviews with LFU patients and DOT-providers, and a focus group discussion with DR-TB site supervisors. A thematic-network analysis approach was utilised.
RESULTS
Three sub-themes emerged: (i) Struggle with prolonged treatment; (ii) Strive against stigma and toward support; (iii) Divergent perceptions and practices. Daily injections, pill burden, DOT, migratory work, social problems, prior TB treatment, and adverse drugs effects were reported as major barriers to treatment adherence and retention-in-care by patients and providers. Some providers felt that despite their best efforts, LFU patients remain. Patient movements between private practitioners and traditional healers further influenced LFU.
CONCLUSION
The study points to a need for repeated patient counselling and education, improved co-ordination between various tiers of providers engaged in DR-TB care, collaboration between the public, private and traditional practitioners, and promotion of social and economic support to help patients adhere to MDR-TB treatment and avoid LFU.
Conference Material > Abstract
Mahbub T, Mathur T, Holmgren J, Ravi S, Das M, et al.
MSF Scientific Days International 2021: Innovation. 2021 May 20
WHAT CHALLENGE OR OPPORTUNITY DID YOU TRY TO ADDRESS? WERE EXISTING SOLUTIONS NOT AVAILABLE OR NOT GOOD ENOUGH?
Individuals with multidrug resistant tuberculosis (MDR-TB) undergo one to three years of treatment and face intense stigma.
WHY DOES THIS CHALLENGE OR OPPORTUNITY MATTER – WHY SHOULD MSF ADDRESS IT?
We used a Photovoice intervention among patients with MDR-TB to explore their lived experiences of stigma and to gauge the efficacy of Photovoice as a tool to engage individuals to speak about it.
DESCRIBE YOUR INNOVATION AND WHAT MAKES IT INNOVATIVE
Photovoice is a visual method requiring participants to use photography to voice, identify, represent, and reflect on their lived experiences. Compared to other interventions, Photovoice provides an innovative & interesting platform for sharing experiences and adds an extra aid for describing experiences.
WHO WILL BENEFIT (WHOSE LIFE/WORK WILL IT IMPROVE?) AND WERE THEY INVOLVED IN THE DESIGN?
This innovation is aimed at helping patients and healthcare providers understand the stigma around MDR-TB. The participants provided input during the study implementation process.
WHAT OBJECTIVES DID YOU SET FOR THE PROJECT – WHAT DID YOU WANT TO ACHIEVE AND HOW DID YOU DEFINE AND MEASURE SUCCESS (IMPROVED SERVICE, LOWER COST, BETTER EFFICIENCY, BETTER USER EXPERIENCE, ETC.)?
This study utilised participatory methods to understand and address stigmatisation associated with MDR-TB at a specialised TB clinic in Mumbaii, India.
WHAT DATA DID YOU COLLECT TO MEASURE THE INNOVATION AGAINST THESE INDICATORS AND HOW DID YOU COLLECT IT? INCLUDE IF YOU DECIDED TO CHANGE THE INDICATORS AND WHY
Nine female patients were recruited from the MSF clinic in Govandi, Mumbai, between September and October 2020. Males were unwilling to join. Following orientation, we met with participants to understand their motivation and commitment to the project. Consent was taken and camera training was provided.
Participants were asked to take four photos of moments, issues, subjects, artifacts, stills, people (unidentifiable), or anything else that represented a form of stigma that they had personally experienced over two weeks. In addition, each participant attended three focus groups facilitated by the MSF clinic, during which 37 non-identifying images and 15 hours of narratives were collected. Participants were also required to attend one dissemination session.
HOW DID YOU ANALYSE THIS DATA TO UNDERSTAND TO WHAT EXTENT THE INNOVATION ACHIEVED ITS OBJECTIVES? DID THIS INCLUDE A COMPARISON TO THE STATUS QUO OR AN EXISTING SOLUTION?
The photos were analysed thematically during the focus group discussions with the participants. The focus group transcripts were coded and analysed thematically.
WERE THERE ANY LIMITATIONS TO THE DATA YOU COLLECTED, HOW YOU COLLECTED IT OR HOW YOU ANALYSED IT, OR WERE THERE ANY UNFORESEEN FACTORS THAT MAY HAVE INTERFERED WITH YOUR RESULTS?
There was no male representation in this Photovoice project. Reasons provided by males for non-participation were primarily around the time commitment, however we suspect that it may also have been due to discomfort when discussing topics such as stigma.
WHAT RESULTS DID YOU GET?
Results revealed that patients with MDR-TB face life altering stigma. Loss (of self, voice, mobility) was the predominant theme, in addition to abuse (mental and social), which caused distress such as shame, isolation, suffocation, and feelings of peril. Education (general or disease-related) did not correlate with non-stigmatising and compassionate behaviour from stakeholders. Married women reported stigmatisation from family members exacerbated by pre-existing power dynamics. Coping mechanisms, which started at diagnosis, included peer/family support, self-motivation, and resilience.
COMPARING THE RESULTS FROM YOUR DATA ANALYSIS TO YOUR OBJECTIVES, EXPLAIN WHY YOU CONSIDER YOUR INNOVATION A SUCCESS OR FAILURE?
Focus groups provided a safe space for participants to voice their feelings. Each and every photo gave the participants a chance to reflect on their own situation and that of others in the group.
TO WHAT EXTENT DID THE INNOVATION BENEFIT PEOPLE’S LIVES / WORK?
Photo-sharing often led to in-depth conversations about shared experiences of stigma among the participants.
IS THERE ANYTHING THAT YOU WOULD DO DIFFERENTLY IF YOU WERE TO DO THE WORK AGAIN?
Gender-specific orientation and focus group sessions may improve male participation. The study will need to be flexible with the time commitment required from the participants. Topics other than stigma can be explored using the Photovoice intervention, for example social difficulties related to TB treatment.
WHAT ARE THE NEXT STEPS FOR THE INNOVATION ITSELF (SCALE UP, IMPLEMENTATION, FURTHER DEVELOPMENT, DISCONTINUED)?
The results of this innovation have been used to improve the MSF counselling package including tools for routine implementation.
IS THE INNOVATION TRANSFERABLE OR ADAPTABLE TO OTHER SETTINGS OR DOMAINS?
The Photovoice intervention can be used in other settings to better understand patient perceptions.
WHAT BROADER IMPLICATIONS ARE THERE FROM THE INNOVATION FOR MSF AND / OR OTHERS (CHANGE IN PRACTICE, CHANGE IN POLICY, CHANGE IN GUIDELINES, PARADIGM SHIFT)?
Photovoice helped participants connect and gave them focus and motivation to be part of a larger cause. Photovoice can be a vehicle for instances of joy, ownership, and creativity to strengthen patient voices for advocacy.
WHAT OTHER LEARNINGS FROM YOUR WORK ARE IMPORTANT TO SHARE?
Improved support and attitude changes from family members and health care workers are needed to curb stigma. Patients were encouraged to provide suggestions and recommendations to reduce stigma and were included content planning.
ETHICS
This study was approved by the MSF Ethics Review Board
(ERB) and the Ethics committee of the Foundation for Medical Research, Mumbai, India.
Individuals with multidrug resistant tuberculosis (MDR-TB) undergo one to three years of treatment and face intense stigma.
WHY DOES THIS CHALLENGE OR OPPORTUNITY MATTER – WHY SHOULD MSF ADDRESS IT?
We used a Photovoice intervention among patients with MDR-TB to explore their lived experiences of stigma and to gauge the efficacy of Photovoice as a tool to engage individuals to speak about it.
DESCRIBE YOUR INNOVATION AND WHAT MAKES IT INNOVATIVE
Photovoice is a visual method requiring participants to use photography to voice, identify, represent, and reflect on their lived experiences. Compared to other interventions, Photovoice provides an innovative & interesting platform for sharing experiences and adds an extra aid for describing experiences.
WHO WILL BENEFIT (WHOSE LIFE/WORK WILL IT IMPROVE?) AND WERE THEY INVOLVED IN THE DESIGN?
This innovation is aimed at helping patients and healthcare providers understand the stigma around MDR-TB. The participants provided input during the study implementation process.
WHAT OBJECTIVES DID YOU SET FOR THE PROJECT – WHAT DID YOU WANT TO ACHIEVE AND HOW DID YOU DEFINE AND MEASURE SUCCESS (IMPROVED SERVICE, LOWER COST, BETTER EFFICIENCY, BETTER USER EXPERIENCE, ETC.)?
This study utilised participatory methods to understand and address stigmatisation associated with MDR-TB at a specialised TB clinic in Mumbaii, India.
WHAT DATA DID YOU COLLECT TO MEASURE THE INNOVATION AGAINST THESE INDICATORS AND HOW DID YOU COLLECT IT? INCLUDE IF YOU DECIDED TO CHANGE THE INDICATORS AND WHY
Nine female patients were recruited from the MSF clinic in Govandi, Mumbai, between September and October 2020. Males were unwilling to join. Following orientation, we met with participants to understand their motivation and commitment to the project. Consent was taken and camera training was provided.
Participants were asked to take four photos of moments, issues, subjects, artifacts, stills, people (unidentifiable), or anything else that represented a form of stigma that they had personally experienced over two weeks. In addition, each participant attended three focus groups facilitated by the MSF clinic, during which 37 non-identifying images and 15 hours of narratives were collected. Participants were also required to attend one dissemination session.
HOW DID YOU ANALYSE THIS DATA TO UNDERSTAND TO WHAT EXTENT THE INNOVATION ACHIEVED ITS OBJECTIVES? DID THIS INCLUDE A COMPARISON TO THE STATUS QUO OR AN EXISTING SOLUTION?
The photos were analysed thematically during the focus group discussions with the participants. The focus group transcripts were coded and analysed thematically.
WERE THERE ANY LIMITATIONS TO THE DATA YOU COLLECTED, HOW YOU COLLECTED IT OR HOW YOU ANALYSED IT, OR WERE THERE ANY UNFORESEEN FACTORS THAT MAY HAVE INTERFERED WITH YOUR RESULTS?
There was no male representation in this Photovoice project. Reasons provided by males for non-participation were primarily around the time commitment, however we suspect that it may also have been due to discomfort when discussing topics such as stigma.
WHAT RESULTS DID YOU GET?
Results revealed that patients with MDR-TB face life altering stigma. Loss (of self, voice, mobility) was the predominant theme, in addition to abuse (mental and social), which caused distress such as shame, isolation, suffocation, and feelings of peril. Education (general or disease-related) did not correlate with non-stigmatising and compassionate behaviour from stakeholders. Married women reported stigmatisation from family members exacerbated by pre-existing power dynamics. Coping mechanisms, which started at diagnosis, included peer/family support, self-motivation, and resilience.
COMPARING THE RESULTS FROM YOUR DATA ANALYSIS TO YOUR OBJECTIVES, EXPLAIN WHY YOU CONSIDER YOUR INNOVATION A SUCCESS OR FAILURE?
Focus groups provided a safe space for participants to voice their feelings. Each and every photo gave the participants a chance to reflect on their own situation and that of others in the group.
TO WHAT EXTENT DID THE INNOVATION BENEFIT PEOPLE’S LIVES / WORK?
Photo-sharing often led to in-depth conversations about shared experiences of stigma among the participants.
IS THERE ANYTHING THAT YOU WOULD DO DIFFERENTLY IF YOU WERE TO DO THE WORK AGAIN?
Gender-specific orientation and focus group sessions may improve male participation. The study will need to be flexible with the time commitment required from the participants. Topics other than stigma can be explored using the Photovoice intervention, for example social difficulties related to TB treatment.
WHAT ARE THE NEXT STEPS FOR THE INNOVATION ITSELF (SCALE UP, IMPLEMENTATION, FURTHER DEVELOPMENT, DISCONTINUED)?
The results of this innovation have been used to improve the MSF counselling package including tools for routine implementation.
IS THE INNOVATION TRANSFERABLE OR ADAPTABLE TO OTHER SETTINGS OR DOMAINS?
The Photovoice intervention can be used in other settings to better understand patient perceptions.
WHAT BROADER IMPLICATIONS ARE THERE FROM THE INNOVATION FOR MSF AND / OR OTHERS (CHANGE IN PRACTICE, CHANGE IN POLICY, CHANGE IN GUIDELINES, PARADIGM SHIFT)?
Photovoice helped participants connect and gave them focus and motivation to be part of a larger cause. Photovoice can be a vehicle for instances of joy, ownership, and creativity to strengthen patient voices for advocacy.
WHAT OTHER LEARNINGS FROM YOUR WORK ARE IMPORTANT TO SHARE?
Improved support and attitude changes from family members and health care workers are needed to curb stigma. Patients were encouraged to provide suggestions and recommendations to reduce stigma and were included content planning.
ETHICS
This study was approved by the MSF Ethics Review Board
(ERB) and the Ethics committee of the Foundation for Medical Research, Mumbai, India.
Conference Material > Slide Presentation
Mahbub T, Mathur T, Holmgren J, Ravi S, Das M, et al.
MSF Scientific Days International 2021: Innovation. 2021 May 20