Journal Article > CommentaryFull Text
Science. 14 May 2009; Volume 324 (Issue 5929); DOI:10.1126/science.1173890
Bhattacharya S, Black RE, Bourgeois L, Clemens JD, Cravioto A, et al.
Science. 14 May 2009; Volume 324 (Issue 5929); DOI:10.1126/science.1173890
Conference Material > Abstract
Mahbub T, Mathur T, Holmgren J, Ravi S, Das M, et al.
MSF Scientific Days International 2021: Innovation. 20 May 2021
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. 20 May 2021