5/9/2014
TB Intensive San Antonio, Texas May 6‐9, 2014
Ethical Consideration In the TB Patient Eva Moya, PhD, LMSW May 9, 2014
Eva Moya, PhD, LMSW has the following disclosures to make: • No conflict of interests • No relevant financial relationships with any commercial companies pertaining to this educational activity
1
5/9/2014
Language and Person-Centered Approaches in Tuberculosis Care Eva M. Moya, PhD, LMSW The University of Texas at El Paso Department of Social Work Heartland Nartional TB Center San Antonio, Texas May 9th, 2014
Goal and Themes Address the negative connotation associated with some of the TB terminology and indentify alternative terms to create a positive approach to TB care. 1.
Ethical considerations
2.
Power of terms and words in TB care
3.
Person-centered approaches
3. Stories of persons affected by tuberculosis 4. Reflection for action
2
5/9/2014
The Race for the TB Cure http://vimeo.com/62245306
Background (WHO, Guidance on Ethics of TB Prevention, Care and Control 2011)
• • • • • • • •
Ethical issues Vulnerable populations Social justice and equity Ensuring a balance between individual rights and liberties Protecting Persons Affected by TB (PATB)and those at risk of infection International Charter of Rights in TB Carta de los Derechos y Responsabilidades en la Atención de la TB (PNT/SOLUCION TB) Universal Human Rights
3
5/9/2014
Ethical Considerations
(WHO, 2011)
• Responsibility of Governments to provide free and universal TB services ‐ “Human Right to Health” (provision of M/XDR‐TB services) • Individuals that are fully informed and counseled about their treatment, risks and co‐morbidities • Provision of quality and caring ‘care’ by health and human service providers, right to adequate protection • Care free of stigma (Moya, 2011; Moya & Lusk, 2013)
Ethical Considerations (WHO, 2011) • Involuntary isolation is rarely justified and should be used as the last resort • Provision of support services to address PATB needs and enhance ability to complete therapy • Duty not to abandon person affected • Duty to conduct responsible research and translate findings • Duty to use multidimensional and cross‐sectional approaches
4
5/9/2014
Addressing TB Requires (WHO, 2011; SOLUCION TB, 2011; Moya 2010) • • • • • • • • • • • • •
Multi‐dimensional and cross sectional approaches Bold policies across the health sectors systems Intensified research Poverty alleviation Action of the risk factors and the social determinants ‘Health in all policies’ approach Removing financial barriers to diagnose and care Ensuring availability of treatments Network of laboratories Well trained and sufficient human resources Proper infection control Person Centered/Empowerment approaches Advocacy, communication and social mobilization (ACMS) strategies
TB Care: Why Words Matter (Zachariah et al, 2012 in the International J Tuberculosis Lung Disease,)
• • • • • •
‘False words infect the soul’ Plato Call on all of us to cease using words like ‘defaulter’, ‘suspect’ and ‘control’ Move away from blaming the patient (PATB) to a patient (person) centered terminology like From ‘defaulter’ to ‘lost to follow up’ From ‘suspect’ to ‘person with possible TB’ or ‘person to be evaluated for TB’ From ‘control’ to ‘care’ From ‘patient’ to ‘person’
5
5/9/2014
Every person affected by TB Has a story, voice, face, hopes, inspirations and rights Is not a case…but a fellow human being TB care is not just about the science of treatment. Care is about dignity, social justice, and a willingness to serve (Zachariah et al., p 716) • Appeal to the global TB community to lead discussions on this issue and to make concrete steps toward changing the current paradigm
• • • •
SOLUCION TB Project Strategies (www.soluciontb.org)
Recruitment and training of dedicated health workers for TB, HIV/AIDS and DM care DOTS Team
Person Affected
ACMS Advocacy, Communication and Social Mobilization
Strengthen Skills and competencies of health personnel, person affected and project stakeholders
6
5/9/2014
Text best practices
In 2010, research findings of Knowledge, Attitudes, and Practices Study were published and made available to wide audiences
Using an ecological model
7
5/9/2014
Individual Factors (PCI, 2010) Age Sex/gender SES-Poverty Marital status Housing (or lack of) Sanitation
Self-esteem, desire to cure
Risk factors (i.e. alcohol, tobacco and other drugs) Migration, mobility Stigma
Costs associated with care
Co-morbidities (DM, HIV, addictions) Knowledge, attitudes and practices Perception of condition, services and treatment Acceptance vs. denial Fear, isolation
Related with Care
Treatment regimen Number & type of medications Side effects Stigma Incentives Lack of social security Quality of care Caring environment Effective communication
•Increased adherence •Informed treatment •Increased access to health and human services •Improved care •Increased cure rate •Empowered PATB
8
5/9/2014
Environmental Factors (PCI, 2010) Family support (lack of) Community support Employment (lack of) Disability Health insurance Social support Human capital Community participation
Factors Related to Health Services Organization of health services Distance Provider and PATB relationship Social services Emotional support Satisfaction with care Accessible, available and affordable services Cost
Increased adherence Increased success rates Reduce MDRTB risk Reduced mobility and mortality Improved contact investigation
9
5/9/2014
Personal Histories with Tuberculosis
10
5/9/2014
“Isolation and Loneliness”
“I am in a cell. I feel alone and imprisoned. When you’re diagnosed with Tuberculosis, you feel isolated from other people. You fear contaminating others.” - Teresita
“Discrimination and Isolation”
“This is the house of one of the TB patients. His family put him in this place because they feared he could infect them. These people are being discriminated and abandoned by their families, communities, and the authorities because of ignorance.” - Mini
11
5/9/2014
“The Torture”
“I used to think of my medication as torture. Efrain helped me to understand that this is really the key to getting better; there is health in that little pill. Now it’s different. I no longer see this as torture.” - Rachel
“How dumb?”
“I felt like a donkey [dumb] at first. The doctor said, ‘Oh it’s cancer.’ I felt so unprepared. More doctors need to be educated and sensitive to Tuberculosis. Doctors are the initial contact between the patient and the disease and we look to them for guidance.” - Teresita
12
5/9/2014
“My duty and responsibility” “Taking medications is not easy. They taste bad and they make my stomach upset. After I take them, I don’t like anyone to talk to me. It takes a while before I feel better. I know it is my obligation and responsibility. But, how much longer must I take them? -Voices and Images Project Participant age 8
Emotional and Social Aspects
13
5/9/2014
“Shame and hiding”
“I see a young man covering his face in shame. He tries to hide as he may be afraid to infect others, afraid of others' reactions, afraid of his own image. This situation exists because we allow it to exist. We can educate, support and spread the word, not the disease.” - Dirk
“Needed support”
“This picture represents the strength, love, and need to live. My daughter supports me to go on. Just like we need family support, we also need the support from the authorities so that we can count on having treatments, quality services, and personnel with human kindness.” - Leticia and daughter
14
5/9/2014
“Tuberculosis is not about pigs”
“We tend to associate Tuberculosis with lack of hygiene. It has nothing to do with that.” - Teresita
“Thanks to him I am alive. He is my everything”
“If it wasn’t for his diagnosis, I would probably still be ill. It was very hard to understand what was happening to us. I saw doctors on both sides of the border. They could not tell me what was wrong until we arrived at the ER, where he was diagnosed. His diagnosis saved us both.” - Brenda
15
5/9/2014
Social Norms and Values
“Freedom”
“Burning this mask was very important to me. I wore it for several months and it was very painful. My peers didn’t know what my face and smile looked like. When I burned the mask, it was like getting rid of the stigma, I felt free.” - Rachel
16
5/9/2014
“The Ladder”
“This represents the individuals who have TB/HIV. Sometimes we are up, and sometimes we are down, depending on the steps that we take. We always have to go up; step by step we have to respect the stairs. Sometimes is not that easy. We would like to make a single jump all the way to the finish line, but its not like that. We have to respect the treatments. With our example, we can motive and help others. With effort and discipline, we can reach the finish line.” - Lino
“Gift of Health”
“This picture is the counterpart to the one titled ‘torture.’ Now, I look at it differently. Taking the medication is a gift of life I’m giving to myself. My attitude is much more positive.” - Rachel
17
5/9/2014
“Be in the Driver’s Seat”
“Being negative about Tuberculosis does not help. You need to turn the experience around and steer your actions to be in the driver’s seat.” - Rachel
Advocacy and Change
18
5/9/2014
“Stop the Stigma, Discrimination and Negligence”
“We need to put an end to stigma, discrimination, negligence and indifference. We have the science, the medication and everything that it takes to stop TB. What is keeping us from doing this?” - Brenda
“Wanted: Adequate Investments”
“More resources are needed for Tuberculosis on both sides of the border. Monetary investment is not enough. Resources, personnel, support groups and increased access have to be addressed.” - Dirk
19
5/9/2014
“Tuberculosis Cemetery: Rest in Peace the White Plague”
“Inside this cemetery you find fear, stigma, shame, isolation, guilt and misdiagnosis. In this cemetery we do not want any person affected by Tuberculosis or HIV.” - Rachel
Role of Advocacy, Communication and Social Mobilization (ACMS) in TB (PCI, 2011; Moya, 2010)
• To increase awareness, detection and cure rates. • To improve collaboration between TB, HIV and Diabetes Mellitus Programs to reduce risk of infection and increase information and co-morbidity detection.
• To promote a person-centered approach in health services and in the community.
• To mitigate impacts of stigma and discrimination • To honor the community resilience, persons’ affected narratives and promote social action
20
5/9/2014
Nuestra Casa Background 2007:
Damien Schumann developed the TB/HIV Shack
2009:
PCI, USMBHA, took on the adaptation of the TB/HIV Shack to Mexico and developed “Nuestra Casa”
2009-10 Nuestra Casa tours 4 locations in Mexico and 2 in the U.S. 2011-12: Nuestra Casa returns to UTEP as an Initiative
21
5/9/2014
Between October 2009 and June 2010, there were four exhibitions in Mexico and two in the U.S.
More than 23,900 persons from all backgrounds visited the Nuestra Casa.
22
5/9/2014
Nuestra Casa Recurring Themes by Location El Paso
Cancun
Oaxaca
Reynosa
Tijuana
Atlanta
Awareness
Human Face of TB
Awareness
Support,
Support
Advocacy
Social Action Commitment (the need for) (personal)
Stigma, discrimination
Advocacy
Empathy
Social Justice
Hope
Empowerment
Hope
Faith
End stigma
Beyond border
Hope, Empathy Humanize TB
Commitment Unity
Call to action Advocacy,
Unity
Gratitude
Power of education Prevention treatment Power of the exhibition Resilience Empowerment Advocacy
Gratitude
Faith
Sadness
Fear
Education
Prevention Education
Gratitude
Love
Compassion Care free of stigma access, adherence
Hope (faith)
Cultural norms Compassion Discriminati Sympathy on Empowerme Prevention Awareness nt
Advocacy Disparities Social Poverty, mobilization
23
5/9/2014
Introduce
Lure…
Engage
24
5/9/2014
Surprise
Inform | Inspire
25
5/9/2014
Feel a part of a movement
Know more
Share and discuss
Engage others
Take me to www.nuestracasainitiative.net
26
5/9/2014
The experience begins.. Make your own ‘trapito’ Commit to change on a postcard Find out about monthly activities at NCI on NuestraCasaInitiative.net
What can health care professionals and workers do? • Challenge negative and discrediting statements and actions rooted in prejudice, stigma and discrimination • Use words and inclusive language to promote respect and dignity • Model empathy and ethical practices • Help others overcome bias, negative attitudes toward immigrants, migrants and vulnerable populations • Reaffirm commitment for a world free of TB and HIV • Protect human rights
27
5/9/2014
What can health care professionals and workers do? • Mitigate all forms of inequities, disparities and stigma • Challenge institutional and structural policies that foster injustices • Create spaces and opportunities for persons affected by TB and other conditions to speak, present and participate in ACSM • Motivate health and human service providers to promote equity and social justice in TB, HIV/AIDS care • Commit time to do service and share expertise with other organizations and networks that promote equity and justice.
Lessons Learned
ACMS strategies are needed to effectively raise awareness, mobilize community members and leaders, and empower and engage persons affected by TB, to successfully prevent and control the diseases and its repercussions. In addition, a person‐centered approach to service delivery is required to improve detection, treatment, adherence, cure, and to mitigate all forms of stigma related to TB. Nuestra Casa is a powerful communication, advocacy and social mobilization intervention to increase social and political will to improve TB and HIV prevention and control and to mitigate stigma:
Community participation, as well as involvement of TB affected persons has increased and is now fundamental for successful social mobilization.
Partnerships and collaborative actions are essential.
28
5/9/2014
Thank You – Gracias Dr. Eva M. Moya Department of Social Work The University of Texas at El Paso
www.NuestraCasaInitiative.net
[email protected]
29