DR-TB HIV Coordinator: Social Inclusion and wellness activities

Stigma is when someone sees you in a negative way.

Discrimination is when someone treats you in a negative way.

TB patients face various forms of stigma and discrimination in the community

Figure: Stigma towards TB Patients in the community

At Individual Level

• Lack of self-esteem and confidence
• Increased sense of emotional isolation, feeling of guilt and anxiety
• Physical as well as financial debilitation
• People, more often women, are forced to leave their homes
• Concealing symptoms and hesitancy in seeking medical care making disease management more difficult
• Delayed diagnosis, interrupted treatment that can lead to further transmission and DRTB
• Vulnerability increases, can lead to suicidal thoughts due to isolation and shame

At Family and Community Levels

• Loss of household earnings
• Exposure of caregivers to the risk of infection that lowers productivity and cycle of poverty further gets perpetuated
• Isolation and stigmatization of infected persons often by people of their community
• Deep-rooted lack of knowledge and misconceptions among the affected and infected within their cultural and religious environment
• Loss of status and negative impact on those with the disease, their caregivers, family, friends and communities
• Perceived and internalized stigma of the community due to socio-cultural values that TB is punishment for sins or transgression

Although more men are affected by TB, women and transgender persons experience the disease differently. Gender differences and inequalities play a significant role in how people of all gender access and receive healthcare services.

Transgender population often has low literacy, low education levels and are poor. A high proportion of transgender persons are known to smoke, consume alcohol and use drugs. All these factors make them vulnerable to TB.

Broad principles to address gender inequalities in TB care

1. Confidentiality of patient needs to be maintained
2. Non-discrimination and non-stigmatising behaviour to be promoted
3. Respect for all to be ensured
4. Informed consent and informed treatment
5. Accountability to be fixed for actions and inactions
6. Access for all health services
7. Rights-based approach
8. Empowered communities - Ensure representation of women, men and transgender persons in all forums
9. Work in partnership - Strengthen linkages between program, private sector and communities

Yoga

• Yoga aims at holistic functioning of the mind and body. It consists of various exercises and specific body positions and movements(yoga asana) which can be learnt and performed under the supervision of a yoga teacher.
• Yoga will help to clean the upper respiratory tract and the sinuses. The breathing exercise or pranayama induce relaxation and help to reduce the stress levels of the patients considerably.

Meditation

• Meditation is a practice where an individual uses a technique – such as mindfulness, or focusing the mind on a particular object, thought, or activity – to train attention and awareness, and achieve a mentally clear and emotionally calm and stable state.

Exercise

• Exercise is being recognized as an important modality for gaining good health and recovering from illness and disease.
• Exercise like cycling and walking are great ways to make sure that the TB infection that was once in your system has been completely eradicated. Once recovered, it is a good idea to keep up the exercise, as this is a factor in stopping the TB from returning at a later date.

• Rehabilitation Service to TB Patients

• Emotional support must be provided to patients with TB and their families during illness. Receiving TB diagnosis is often regarded by patients as a real stigma that isolates them from their family and society. Psychologists can support patients to help reduce misconceptions and socially integrate former patients.

• TB is a contagious disease that induces fear and social isolation and needs a long period of drug administration, sometimes with adverse effects. Therefore, therapeutic education is very important, which serves the purpose of explaining to patients and their families about the condition of the disease, the risks of contagiousness, the stages of treatment and prognosis.

• Exercise may be light initially, followed by assisted and active exercise. Once the patient’s condition is stable, a 6-minute walk test may be done in the room or corridor. The intensity should be progressively increased, depending on the patient’s tolerance.

• Nutrition: Weight loss is associated with fatigue and decreased exercise capacity. There is a risk for the patient not recovering body weight at the end of drug therapy, despite receiving correct TB treatment. Nutritional supplementation may play a positive role in the recovery of these patients.

• Tuberculosis Drug side effects: A proactive clinical approach is required to replace/stop the use of the concerned drugs.

• Providing Assistive devices Hearing aids, cochlear implants, tinnitus-masking devices, mobility aids, and prosthetic/orthotic devices improve the quality of life of patients.

• Corrective Surgery: May be required in TB of the bones, spine etc.

• Community and home-based care: This becomes important in severe neuromuscular deficits and movement disabilities.

• Physiotherapy: A trained physiotherapist may help through:
  • Sputum clearance technique for reduced sputum quantity, better ventilation and relief of symptoms
  • Cough education involving body positioning during coughing, control of breathing in coughing to achieve mobilization and secretions

• Counselling: Psychological support is required for facing long-term/permanent disabilities like loss of vision and hearing loss as side effects of the drugs, paralysis in TB meningitis, infertility in genital TB etc.

• Livelihood options: NGOs and support groups can create such options and/or facilitate treated patients to find various livelihood options

The Patients’ Charter for Tuberculosis Care (the Charter) outlines the rights and responsibilities of people with TB. It empowers people affected by TB and their communities through this knowledge. Initiated and developed by persons affected by TB from around the world, the Charter makes the relationship with healthcare providers a mutually beneficial one.

The Charter sets out ways in which people affected by TB, the community, health providers (both private and public), and governments can work as partners in a positive and open relationship with a view to improve TB care and enhance the effectiveness of the healthcare process. 

It allows for all parties to be held more accountable to each other, fostering mutual interaction and a positive partnership.

Principles of the Patients’ Charter for TB Care

• The charter practices the principle of Greater Involvement of People with TB (GIPT).
• This affirms that the empowerment of people with the disease is the catalyst for effective collaboration with health providers and authorities and is essential to victory in the fight to end TB.

Parts of the Patients’ Charter for TB Care

There are two main parts in the patients’ charter for TB care which cover:

1. Patients’ rights 
2. Patients’ responsibilities

These parts are further delineated in Tables 1 and 2 below.

​​​​​Resources

• The Patients’ Charter for Tuberculosis Care, The Global Plan to Stop TB 2006-2015.
• Capacity-building of Affected Communities for Accelerated Response to Drug-resistant Tuberculosis in the South-east Asia Region, WHO, 2019.

Assessment