TB causes suffering and even death. Despite highly effective treatment, there are many psychological, social, medical and economic factors that can prevent people from accessing diagnosis, following care plans and successfully completing a course of treatment. The following is an adapted summary of how these factors may have an impact on psychological health, health-seeking behaviour and adherence (8):
- Stigma, fear of discrimination, social isolation and lack of social support can affect screening, access to care and the ability to complete a treatment plan.
- The poorest and most marginalized communities that are at high risk of TB are also most likely to experience significant health and economic inequalities which further limit their access to care and treatment.
- The diagnosis of TB may cause distress and have an impact on self-worth that may affect patients’ sense of agency.
- Financial worries and limitations on everyday activities associated with TB (e.g. time off work) and its treatment (e.g. diagnostic and treatment costs, transport costs) add to the burdens on the patients.
- Long treatment duration may cause frustration and possible side-effects may make treatment intolerable or unpleasant, leading people to interrupt treatment.
- Life situations (e.g. financial challenges, a death in the family or marital difficulties) may have a negative impact on psychological health and on patients’ ability to take their medication.
- TB often presents with comorbidities (e.g. diabetes, HIV/AIDS) which may cause further difficulties for the patient.
- People with TB may also have mental disorders – such as opioid or alcohol use disorders or depression – that may complicate their ability to adhere to treatment or tolerate medication without additional support. Similarly, some TB medications may also worsen mental health conditions.
- Poor-quality medical care without rights-based, people-centred and respectful care can also add to the psychological burden of illness and treatment.
- When treatment fails, people grieve and may suffer and feel hopeless.
- Lack of support from services, friends and family may harm the patient’s emotional health.
- TB and its long-term treatment affect families and caregivers. Their anxieties and burden of work taking care of the patient can make it difficult to support treatment adherence, infection control and the patient’s needs over time.
Several populations are particularly vulnerable to TB and at higher risk of having poor outcomes, namely: children, miners, migrant populations, people who are incarcerated, and people who suffer from opioid or alcohol use disorders. Health-care providers who deal with vulnerable populations need to have skills to assess and respond to the psychological and social needs of these people when TB is detected (17).
Social support is very important to a people-centred approach to improve the well-being of people infected with TB and to support treatment plans by addressing the barriers described above. Social support must be available for people throughout TB treatment, from diagnosis to the conclusion of the treatment.
Social support refers to the amount of perceived and practical care received from family, friends and/or the community (18). It aims to provide care to patients to show that they are part of a social network that cares for them. Social support improves health outcomes and reduces death. Adding social support to the medication treatment regimens can improve treatment outcomes for people suffering from TB (15, 16).
Social support is made up of four resources, namely (11):
- Informational support is information or education that helps a person to solve problems and reduce stress; it includes training and education on the medications a person is taking, their possible side-effects, how treatment is monitored, and how the success of treatment is determined.
- Psychological (emotional) support refers to all types of care that strengthen self-esteem through understanding, trust, encouragement and care, and that help to deal with the psychological challenges in life.
- Material support includes financial support which could be money (e.g. grants from the government), food support, travel support or anything that helps the patient with the financial costs of TB disease and its treatment.
- Companionship support is help that makes a person feel that he or she belongs to the social system, and that he or she can rely on it for certain needs.
Creating a way for the TB programme to deliver these four social support resources to patients, taking into consideration any specific age- or gender-sensitive concerns, is necessary for a personcentred approach that makes sure patients are doing well and can complete their TB treatment. The principles of social support described here should be ensured for vulnerable populations, including older persons, people who are incarcerated, internally displaced persons or refugees, people with substance use disorders, indigenous communities and ethnic minorities.
Many programmes use a multidisciplinary “support to adherence” team (social workers, nurses, health educators, community treatment supporters and doctors). Support may focus on problems related to different stages of treatment, social stigma of the illness, treatment adherence, side-effects, financial and social difficulties, other comorbidities or special situations and death.
The type of support should be selected on the basis of an assessment of the patient’s needs, the health provider’s resources and conditions in the community. A single type of support or a combination of different types of social support can be chosen for each patient according to the individual needs. Social support should be available to people in in-patient or out-patient care, including home- or community-based treatment and care, peer support and community TB support programmes.
¹ Treatment adherence interventions include: social support such as patient education and counselling; material support (e.g. food, financial enablers, transport fees); psychological support; tracers such as home visits or digital health communications (e.g. SMS, telephone calls); medication monitoring; and staff education. The interventions should be selected on the basis of an assessment of the individual patient’s needs, the provider’s resources and the conditions for implementation.
² Suitable treatment administration options include various forms of treatment support, such as video-supported treatment and regular community- or home-based treatment support.
³ Tracers refer to the communication with the patient, including home visits or via SMS, telephone (voice) calls.
⁴ A digital medication monitor is a device that can measure the time between openings of the pill box. The medication monitor can have audio reminders or send an SMS to remind the patient to take medications, along with recording when the pill box is opened.
⁵ Material support can be food or financial support such as: meals, food baskets, food supplements, food vouchers, transport subsidies, living allowance, housing enablers, or financial bonus. This support addresses indirect costs incurred by patients or their attendants in order to access health services and, possibly, tries to mitigate consequences of income loss related to the disease.
⁶ Psychological support can be counselling sessions or peer-group support.
⁷ Staff education can be adherence education, charts or visual reminders, educational tools and desktop aids for decision-making and reminders.