4. Health education and counselling for people affected with TB

This section focuses on a key recommendation on patient care and support by providing health education and counselling on the disease and treatment adherence to TB treatment (15, 16).

This recommendation is based on evidence from extensive literature which shows better rates of treatment adherence and completion, and lower rates of LTFU, in patients who received health education and counselling prior to and during the course of TB treatment (15, 23, 36–41). Health education and counselling on TB and its treatment should be provided to all patients.

The goal of health education is to provide accurate information so that patients have the information to make the best choice for themselves. Education can be provided by talking with the patient, distributing written materials, sharing video recordings, or through arts and performance with participation of people affected by TB. The education should discuss TB as a disease, its treatment and the services for which the patient is eligible. The education can and should be given at multiple times during TB treatment both to remind patients of information and also to provide specific information for treatment changes that may be coming up. Education could occur right before or at the start of treatment, when finishing the intensive phase of therapy, or at each presentation or interaction for follow-up care. It can be provided by different types of health care workers or pharmacists. Educational sessions might include the patient alone or might involve the patients’ family members and/or friends. (15, 16).

While health education aims to equip people with the right knowledge, counselling helps them to apply that knowledge by changing their attitude and behaviour. The term “counselling” refers to a two-way interaction between the patient and the health care provider. It is an interpersonal, dynamic communication process that involves a kind of contractual agreement between a patient and a health care provider who is trained in counselling skills and who is bound by a code of ethics and practice. It requires understanding and concern for the patient without any moral or personal judgement. To achieve this, health care providers should be taught interpersonal skills in order to build a partnership with patients and to have good communication skills in order to talk with them and strengthen their understanding of TB. The goal is to make the patients feel strong enough to do what they need to do for treatment of their TB disease.

4.1 Guiding principles for health education and counselling

With regard to the rights of patients outlined in the declaration of the rights of people affected by TB (9), the following are particularly pertinent as the guiding principles for patient education and counselling:

the right to be treated with respect and dignity;
the right to information;
the right to confidentiality.

People have a right to complete and correct information related to TB and the suggested treatment’s risks and benefits explained in simple language that patients can easily understand. If possible, written information should also be shared. The goal of counselling is to make sure that people have understood the information and to answer any questions they might have. The health care provider should also correct any commonly held misconceptions or myths about TB.

A person’s independence and right to choose should be respected. The health care providers should respect the patient’s choices and beliefs and not make decisions for the patient. All efforts should be made to involve the patient in making a treatment plan. WHO clearly states that every person affected by TB has the right to liberty and security of person and that involuntary detention, hospitalization or isolation of a person with TB is a deprivation of liberty and violation of the security of the person (9). WHO also narrowly defines the circumstances in which this right can be overridden but makes clear that this must be for the shortest duration possible and in accordance with strict guidelines.

Section 2 on the people-centred approach described how people suffering from TB might face stigma, prejudice or discrimination from the community as well as from health care providers. All efforts should be made to protect people from discrimination and to engage them in the most inclusive way. They should be treated with respect and dignity no matter what their age, gender, financial status, social situation, religion, sexuality or any other factors. In order to reduce stigma and discrimination, patients should be reminded that TB is not the result of any wrong behaviour and that most people completely recover after completing treatment.

People suffering from TB should have personal privacy and confidentiality. It is important that they are seen in a private space for health counselling. They should be assured that information about their care is confidential and that it will not be shared with another person without the patient’s permission. Other family members should be invited to join the discussion only after receiving permission from the patient.

4.2 Effective communication skills to provide health education and counselling

Communication is best when it is a discussion between the patient and the health care provider, and not just the health care provider giving instructions or information to the patient. Good communication skills are very important for the treatment of TB. Not only can good communication help patients to understand the disease and treatment, but it can also help the community to better understand TB and correct misinformation that contributes to stigma (42).

Some important elements of communication needed for health education and counselling are discussed below.

4.2.1 Forming a therapeutic alliance

The first step of counselling is to build a partnership with the patient and, if present, with his/her family. This partnership is the foundation that encourages people not just to participate in health education meetings, but also to engage in all aspects of treatment and care. Developing a trusting and caring environment is needed for this partnership, so that people are more likely to talk about their situation and concerns and receive necessary information. Forming a partnership allows for the sharing of information which is important to the process of counselling. Trust and a feeling of understanding should develop between the patient and the health care provider.

Understanding is one of the most important elements in forming a partnership. A health care provider should try to understand a patient’s problems and feelings in a particular situation and should be able to communicate that understanding back to the patient. In order to build understanding, the health care provider should: 1) listen and observe carefully, without making judgements, in order to gather information; 2) focus and understand how the patient feels; and 3) talk with the patient to make sure he/she has been understood correctly. This is particularly important because it shows the health care provider’s sincere desire to help, develops a full understanding and provides an opportunity for the patient to explain further. This can be achieved by statements such as “it sounds as if the pain is unbearable..”. or “have I got it right that you are unable to sleep because of the cough” or “let me just check that...”.

Empathy is not the same as sympathy. Sympathy means, for instance, that a health care provider feels sad or becomes tearful when a person starts to cry. Understanding does not mean that a health care provider has to actually “feel” like the person. Instead, the health care provider has to “understand” how the person might feel (43). For a complete understanding, health care providers should understand the cultural values and health beliefs of the patients they treat. They need to constantly check that they have understood what the patient explained. This might be a reason why patients continue to seek health advice from faith healers who share a better understanding of the patients’ experiences.

Many of the skills of good communication are important when providing counselling – including active listening, the language used, gestures and body language, and showing genuine interest and care.

4.2.2 Active listening

Actively listening is a specific communication skill which involves giving undivided attention to both verbal and non-verbal cues. It requires intense concentration; the health care provider should show a deep interest in and respect for patients and should not interrupt them. In health counselling it is very important to listen to patients carefully so that the conversation can be adjusted to their individual needs.

Active listening is more than just hearing someone else’s words; it means paying attention and showing that you have heard and understood what is being said to you. If health care providers can show that they really are listening, this increases the patient’s trust and confidence in the health care provider and the patient will feel more comfortable. This will make it easier to form a partnership.

To show that the health care provider has understood what has been said, it helps to repeat to the patient or summarize what has been said using different words. Paraphrasing or summarizing a patient’s responses or questions may also help to verify information. Some helpful examples of summarizing a conversation are:

“Let me check if I have understood you correctly. You understand what TB is; you also understand about the treatment that has been recommended for you and why this treatment is so important for you. But you are worried about the side-effects of the medicines, especially because you will be taking these medicines for a few months, is that right?”

These skills also show the participation of the health care provider in the conversation. Another communication skill is called reflection. For example, if a patient is describing his or her concerns, the health care provider should observe the patient’s emotional reaction and then comment “It looks as if you are very worried about these symptoms.” Acknowledging a patient’s feelings also shows understanding and helps build an effective relationship.

4.2.3 Using non-verbal communication

Non-verbal communication includes eye contact, facial expressions, gestures, looking attentive, posture, nodding one’s head and other movements.

Non-verbal communication also involves both the patient and the health care provider. The behaviour of the health care provider can give strong messages to show respect for and interest in the patient: It also builds a relationship, shows that the health care provider is listening carefully and shows that they want to help the patient understand about TB and treatment. Health care providers should use non-verbal communication to show that they are actively listening; this includes eye contact, smiling, nodding and sitting down while talking. The health care provider should avoid doing things like looking at their watch or fidgeting.

A patient’s expressions also communicate emotions. Movements of eyes, mouth, eyebrows, forehead or even nostrils in different combinations signal happiness, sadness, anger, surprise, disgust, fear and interest. A slightly furrowed forehead will usually mean that the person either disagrees with what is being said or does not understand. That simple expression alone can show that they need more explanation. Because tension and anxiety may be reflected in body language, a reasonable guess at a person’s state of mind can be made simply from looking at their posture. People who are anxious or worried about something tend to adopt characteristically tense positions of the hands, which may be clasped tightly together, or of legs, which may be wrapped around each other or the feet may tap repeatedly on the floor. Often without the need for any words, these clues can alert an observant health care provider to investigate further.

4.2.4 Asking questions

Asking questions appropriately is an important technique that can help to:

identify what is already known and reveal any information gaps;
identify specific needs;
explore the attitudes and beliefs of a patient;
generate discussions and options for problem-solving;
help to understand the reasons behind decisions or actions.

An understanding of a patient’s existing knowledge about TB and its treatment is important before giving further information. In this situation, asking questions is important. A balance between “closed” and “open” questions can help to collect the necessary information in a short time.

A closed question is one to which the only answer is “Yes” or “No”. Some examples are: Do you have a cough? Do you have fever? The trouble with using closed questions is that “Yes” or “No” often does not describe fully what the person wants to say.

That is where the “open” question has value. This type of technique lets people describe their experience in their own words. Open questions are short and suggest no specific answer. They begin with words like “What”, “Why”, “How” and are very short. Some examples are: How do you feel after you take your medicines? Why do you have trouble taking your medicines every day?

Ideally, a problem should be explored with open-ended questions and then closed-ended questions should be asked in order to complete the information. Sometimes, however, people may go into unnecessary details and health care providers need to maintain some control over the interaction by gently moving on.

4.2.5 Providing information

Health education and counselling must be given in very simple and clear language. Even medical information should avoid technical terms and medical jargon. Sometimes a limited amount of information is shared in one meeting so that the patient can understand it and then can think about it and is prepared for further information at the next meeting. Sometimes, important information needs to be repeated to help the patient understand it.

Health care providers should use language that is respectful towards patients and caregivers. It is important to not use derogative or judgemental language. Terms such as “defaulter”, “suspect” and “control” are disrespectful and disempowering. These are best replaced with “person lost to follow-up”, “person with suspected TB” or “person to be evaluated for TB”. The term “control” can be replaced by “prevention and care”. Similarly, expressions such as “patient failed treatment” or “failed to comply” reflect the view that the patient is to blame for the failure of treatment (44).

The volume and tone of the voice of the health care provider is also important during health counselling. A very loud volume might be intimidating, and a very low volume may be difficult to hear or may give the impression that the health care provider is unsure of him/herself. Similarly, if the health care provider is speaking too fast, it seems as if they are in a rush and can also be difficult to understand. Table 1 summarizes effective communication skills for a clinical encounter (45).

Table 1. Effective communication skills

4.3 Counselling to provide information about TB and the responsibilities of affected individuals and communities

This section focuses on what information about TB needs to be provided to patients and how that information should be provided.

The sharing of information with patients and their families should begin as soon as the diagnosis of TB is made. If the patient is being treated for DR-TB, another good time to have an educational meeting is when finishing the intensive phase of treatment. Educational talks should continue over several visits throughout the treatment course. Education can be provided by physicians, nurses, community health workers and other health care providers.

It can be difficult to provide patients with the information they need. A lot of new information, much of which may be technical, has to be given to someone who may not understand medical language well. The patient may not feel well and may also be emotionally distressed because of the diagnosis. The patient may also have health beliefs that contain incorrect information about TB.

4.3.1 What information must be provided?

1. Factual information about TB as a disease and its treatment

Information about TB and its treatment should be explained to the patient. This includes:

what causes TB, how it is spread, the symptoms of TB and what can happen if TB is not treated;
an explanation that TB is treatable and curable, and how to access treatment for TB;
how TB is treated: how long the treatment lasts, the types of medicines that are used to treat TB and the possible side-effects of the medications;
the effects of TB treatment on other comorbidities (e.g. alcohol, illicit drugs etc.);
what could happen if a patient stops taking TB medications against the advice of the health care provider;
why starting treatment quickly after diagnosis reduces the risk of transmission to others;
the infection control practices that help to reduce the risk of spread of TB;
what the available support services are and how to make a referral plan and/or organize integrated care at an early stage in case of other comorbidities.

2. The rights of people affected by TB

The Patients’ Charter for Tuberculosis Care (10) outlined the rights and responsibilities of people with TB. The charter encouraged a person-centred approach in the treatment of TB, and encouraged collaboration between patients, communities and health care providers in order to improve TB care. In 2019, WHO also declared the rights of people affected by TB (9). These are outlined in Table 2.

Table 2. The rights of people affected by TB and obligations of state and non-state actors

4.3.2 How should this information be provided?

Effective communication skills are described in Section 4.2. These need to be practised by health care providers before they can share the information outlined above as part of health education and counselling.

1. It is important to form a partnership with the patient before sharing any information. All efforts should be made to have a two-way conversation, rather than the health care provider just telling the patient facts. Patients should be encouraged to ask questions, information should be repeated to help them understand, and health care workers should check whether the patients have understood the information by asking short questions. Taking time to make sure that patients understand leads to better treatment outcomes.

2. The first question should be: “What do you already know about TB?”

Once a health care provider has found out what a patient already knows about TB, the health care provider can focus the discussion on what the patient still needs to know.

3. The next question should be: “What questions do you have about TB?”

The information about TB can then be personalized to the patient. For instance, it is quite possible that a patient is more interested in treatment options than the cause of TB. Once patients’ questions have been answered, they may be more ready to discuss other important TB subjects. Sometimes, it might be difficult to give all the necessary information during one meeting, so the health care provider needs to prioritize the information so that the most important questions are answered first.

4. Next the health care providers need to ask themselves: “What is the most important information that the patient must understand?”

The health care provider should focus on this most important information during the first educational talks with the patient. The health care provider should still encourage questions from patients and help them understand information by repeating it or asking them short questions.

Questions like “What do you know about your rights?” will communicate better with patients instead of reading them a list of their rights.

5. Finally, health care providers should summarize the gaps and mistakes in the patient’s knowledge about TB.

While respecting a patient’s religious beliefs, it is important to explore their health beliefs – particularly those that might make it difficult for the patient to finish treatment. These questions also help to the health care provider to understand what patients think about their illness or treatment, especially in their cultural context. Most people already have some understanding of TB because it is a common illness. They might also be anxious about their diagnosis or have some worries about the health care provider and the treatment. These concerns, beliefs and worries must be dealt with as part of health education and counselling. Families may also have their own ideas which might or might not be shared by the patient. Since families have a strong influence on patients’ behaviour, their views also need to be taken into account. This helps to avoid confusion within families with regard to medical advice. The importance of exploring a person’s health beliefs is also relevant to Section 5.4 on counselling for treatment adherence.

In addition to sharing information during visits, educational pamphlets that clearly state facts about TB and its treatment are very helpful. The educational material should be appropriate for all ages, culturally sensitive, presented in local languages and in reader-friendly formats. Digital tools with audio or visual aids are also likely to help patients who may have difficulty reading. Additionally, specific marginalized populations may require special educational efforts.

4.4 Counselling to provide information about TB treatment and to ensure adherence to treatment

This section discusses how to counsel patients about TB treatment to help prevent them from stopping their treatment without medical advice.

4.4.1 Counselling to provide information about TB treatment

Patients and their caregivers should be prepared for TB treatment by giving them information (see Table 3) about:

the treatment administration options; length of treatment; importance of adherence to treatment;
pharmacological treatment: drug regimen; side-effects; monitoring side-effects;
infection control at home and in the community;
follow-up plan: routine appointments; emergency contact;
support mechanisms: social support and social protection;
palliative and end-of-life care.

Table 3. Information about TB treatment

As already noted, participate and completely understand that treatment should not be stopped without medical advice.

4.4.2 Counselling to ensure adherence to treatment

The most common challenge in TB care is when a patient discontinues taking medicines or misses treatment appointments. For this reason, it is extremely important to have a plan to quickly follow up with the patient. If possible, this plan should involve a member of the TB treatment centre team (community nurse, doctor, TB treatment supporter) who will visit the patient at home the same day, if the patient has given you permission to visit their home. If they have not given you permission, another plan should be in place to contact the patient (e.g. by mobile telephone or through a trusted friend of the patient who the patient has given you permission to contact).

The following steps should be taken (11):

Make a home visit to engage with the patient, if they have given you permission to visit their home.
Assess the reasons for discontinuing the treatment.
Discuss the concerns that caused the patient’s non-adherence.
Educate the patient about the need to continue treatment.
Counsel and support the patient.
Involve family members/caregivers to ensure treatment.

1. Home visit to engage with the patient

The member of the TB treatment centre – such as community nurse, doctor or supervisor – should visit the home (if given permission) of the patient together with, or in addition to, the TB treatment supporter. During the home visit it may be possible to identify more clinical problems than during the monthly clinic evaluation. The patient should be treated in a friendly and sympathetic way by showing that he/she is respected and valued. The guidelines discussed in Section 5.2 on effective communication skills should be followed.

2. Assess the reasons for discontinuing treatment

Every effort should be made to listen carefully to the patient’s reasons for missing treatment.
The health care provider should make a list of problems that contributed to the patient being unable to follow treatment.
The health care provider should explore the patient’s understanding of the illness.
The health care provider should be sympathetic and should recognize the difficulties faced by the patient.
The health care provider should not just speak at the patient but should have a discussion with him/her.

3. Discuss the patient’s concerns that caused non-adherence

The health care provider needs to discuss some of the common reasons why patients are unable to follow up with treatment or take their medications. For instance:

a. Manage side-effects

The most common reason for stopping treatment is difficulty in tolerating medicines. This is particularly important when people are on second-line medicines for the treatment of DR-TB. It is extremely important to inquire about possible side-effects and to refer to the guide on managing these (46).

b. Explore the person’s health beliefs

People can hold a number of beliefs and ideas – for instance, on what has caused their illness or how can it be treated, which are quite different from those held by the health professionals. If patients believe that there is no cure for TB, or that when symptoms get better it is not necessary to continue treatment, or that cure might be offered by alternative or traditional medicine, they may not continue their treatment.

Some examples of questions that can help explore a patient’s health beliefs are:

What do you think has caused your illness?
How does your illness affect your body?
How severe do you think it is?
What kind of treatment do you think might help?
What are the major problems caused by your illness?
What are you afraid of most about your illness?

In such cases, the TB treatment supporter, along with a nurse, doctor or community supervisor, should explore ways to correct the misunderstandings and discuss with the patient how to restart treatment.

c. Address economic problems

Many people are unable to work when they are ill and may be the primary wage-earners for their family. Housing, food and clothing needs should be assessed to find out what types of material support can help (see Section 3.2 for more details).

d. Address substance use or other mental health conditions

Alcohol and drug use are known to affect treatment adherence. People should be encouraged to reduce or stop consumption if it interferes with their treatment. If this is difficult or other mental health conditions are suspected, consultation with a mental health or other relevant specialist should be considered.

e. Problems with the health care service

People may have problems with health care providers who might arrive late, might not listen carefully, or might make the patient feel not respected or not valued. These issues are also known to affect adherence and must be addressed. The health care provider should recognize any service problems, apologize and offer a solution.

f. Address social problems

If there are other social problems, the patient should be referred for appropriate support. This would also include homeless people, or patients who might be shunned by their family or who have to re-locate for immigration, work or economic reasons, in which cases they should be linked to services in the new location.

4. Educate the patient about need to continue treatment

The health care provider should:

Assess if there are gaps in the patient’s understanding of the disease and its treatment.
Correct any misunderstandings or misinformation.
Encourage the patient to ask additional questions.
Summarize the diagnosis, treatment and recommended steps in simple terms.
Ask the patient to repeat or describe the treatment terms.

5. Counsel and support the patient to resume treatment promptly

Once the reasons for discontinuing medication have been discussed, have been dealt with to the best of the health care provider’s ability and the patient has been educated about the need to continue treatment, the health care provider should reassure the patient and provide realistic encouragement. Follow-up plans should be confirmed with the patient.

Further guidelines for psychological support are discussed in Section 5.5.

6. Engage community health workers, family members and caregivers to ensure treatment adherence

Engagement of community health workers has been demonstrated to be effective in securing favourable treatment outcomes. Family can also be an important source of support for the patient. If it is not possible for a family member to care for the patient, another caregiver should be identified and should also be educated about the need to continue treatment so that they can make sure the patient takes the treatment correctly at home. Information about measures to prevent the spread of infection, and that a person is usually no longer infectious within 2 weeks of the start of treatment, is also extremely important.

Community opinion and religious leaders can be helpful if there are community-wide issues – such as stigma towards patients dealing with TB. This option is possible only if the patient allows the health care providers to share information about his or her TB diagnosis.

4.5 Counselling to provide psychological support

Section 3.2.2 describes factors that can affect a person’s psychological health, cause distress, decrease their quality of life, prevent them from following their treatment plan and cause them not to be able to complete a course of treatment.

Being diagnosed with TB and worrying about its impact on what a patient needs to do daily – employment, income, family and taking treatment as prescribed – can be an extremely stressful experience. A stress response can manifest in psychological symptoms, physical symptoms and changes in behaviour (see Table 4).

Table 4. Symptoms of stress

People with TB may be more vulnerable to developing severe stress responses. Common mental disorders and TB are both associated with greater social vulnerability, inadequate living conditions and socioeconomic inequality (17, 47–49). People with mental illness may find it very difficult to take the long treatment course required for TB (50). People with mental illness and TB would particularly benefit from psychiatric care (51). Additionally, some of the TB medications are associated with psychiatric side-effects (52).

It is extremely important to recognize and deal with the stress reactions in people who are at risk by finding out what their worries and concerns are and by offering support. They should be referred to specialist services if necessary. This section focuses on providing basic psychological support, strengthening social support, problem-solving technique and providing support to caregivers and dependent family members.

4.5.1 Basic psychological support

Basic psychological support tries to help people deal with emotional distress and help them recover from stress responses (53). In addition to following the principles of effective communication in Section 5.2, these guidelines should be followed:

Distressed people may not always give a clear account of their situation or may take longer to explain themselves. They should be listened to patiently, without interrupting or rushing them. Asking for clarification usually helps. Sometimes, they might find it difficult to open up their feelings; being there and reassuring them is important. If they describe their feelings or difficult experiences, responding with empathy and sensitivity can help. Some examples of responses are:
That sounds like a very challenging experience.
I understand how painful this has been for you.
I can see why you are so worried (or frightened).
Sources of stress should be identified. After actively listening and allowing the person to speak without interruption, following questions may be needed:
What is your biggest worry these days?
How do you deal with this worry?
What are some of the things that give you comfort, strength and energy?
Their basic needs should be assessed. If they need more information or additional services, simply establishing contact with their family and providing other social support is important.
Education should be provided about the normal stress reactions of people diagnosed with TB or experiencing difficulties with treatment or services.
If the stress reaction is long or severe, specific stress management techniques should be offered (54).
The health care provider should look for potential signs of sexual or physical abuse (including domestic violence) in women, children and older people (e.g. unexplained bruises or injuries, excessive fear, overly withdrawn behaviour, reluctance to discuss matters when a family member is present, malnourishment in a family with access to sufficient food). When signs of abuse or neglect are present, the patient should be interviewed in a private space and asked if anything hurtful is going on. If abuse or neglect is strongly suspected or confirmed, help should be requested from colleagues with experience of dealing with this. If the patient gives consent, he/she should be referred to relevant community resources for protection (e.g. trusted legal services and protection networks).

4.5.2 Strengthen social support

Strengthening social support is important to reduce the many of the harmful effects of stress (45).

The first step is to ask about support mechanisms that the patient has now or those that might have helped the patient in the past.
Some example questions are:
What comforts you when you are upset?
Do you talk to anyone about your problems and what you are going through?
Is there any person who you feel can give you support?
Who do you feel most comfortable sharing your problems with? When you are not feeling well, who do you turn to for help or advice?
How is your relationship with your family? In what way do your family and friends support you and in what way do you feel stressed by them?
Then identify people who could provide support, such as trusted family members, friends and community members, and talk about how each one can be involved in helping.
If the patient is willing, he/she should be referred to other community resources for companion or material support. These include: social or protection services; community centres; self-help and support groups; employment and or other income-generating activities; formal/informal education; shelter, food and non-food items; child-friendly spaces. When making a referral, the patient should be helped to access them (e.g. provide directions to the location, operating hours, telephone number) and provide the patient with a short referral note.

4.5.3 Problem-solving technique

Stress can affect a patient’s ability to respond well to problems. Patients may feel helpless or lack confidence in managing their problems, or possibly their feelings of anxiety or grief will get in the way of managing their day-to-day problems well. Problem-solving is a step-by-step strategy that may help distressed patients to solve and manage their problems (55).

In general, direct advice should not be offered. Instead, patients should be helped to explore their own solutions (see Box 2).

4.5.4 Provide support to the caregivers

It is important to realize how stressful it can be to care for people with TB and how important the caregiver is in helping the patient to recover completely from TB. Caregivers need to be respected even if they find it difficult to support the patient with TB; if the patient allows, the caregiver should be involved in making decisions about treatment. Providing support to the caregivers is an important psychosocial element of treatment for chronic conditions (45).

Some areas that may help assess the stress in caregivers are:

worries and anxiety around caring for the person with TB;
practical challenges (e.g. burden on the caregivers’ time, freedom, money);
ability to carry out other daily activities, such as work or participation in community events;
physical fatigue;
social support available to the caregivers:
psychological well-being.

Once their needs have been assessed, the health care provider can help by:

providing information;
linking the caregiver with community services and supports;
discussing respite care, which is when another family member or appropriate person can take over the care of the patient temporarily while the main caregiver takes a rest or does other things they need to do;
offering problem-solving or stress management counselling;
referring the caregiver to mental health services, if needed.

4.5.5 Refer to mental health services

If a mental health condition is suspected or identified, refer the patient to appropriate mental health services.

4.6 Counselling on nutritional care and support

In view of a strong bidirectional causal link between TB and undernutrition, WHO recommends that all persons with active TB should receive appropriate counselling based on their nutritional status at diagnosis and throughout treatment (21).

Undernutrition can present in children, adolescents or adults, including pregnant women. In case of young children (under the age of 10), their parents need to be part of counselling and support. In case of adolescents (ages 10–19), the health care providers should make an effort to develop a therapeutic alliance with the young person as well as his/her parents (Section 4.2.1).

4.6.1 Treat the underlying cause

An assessment of the cause of undernutrition is essential. If the cause is primarily poverty or food insecurity related, these socioeconomic issues will need to be addressed. If underlying medical causes are suspected, then an appropriate medical referral should be considered. In cases of comorbid medical (e.g. diabetes) or psychiatric conditions (e.g. alcohol use), again the individual should be referred appropriately.

Irrespective of these causes, the person should be offered the counselling techniques already described: basic psychological support (4.5.1), strengthen social support (4.5.2), Problem-solving technique (4.5.3), and provide support to the family/caregivers (4.5.4).

4.6.2 Educate the person

In cases where the health care providers feel that the person does not understand the nature of undernutrition, potential harm and need for diet modification or nutritional supplements, the health care providers should follow the principles of ‘health education and counselling’ described in Section 3 to educate the person.

4.6.3 Assess ‘readiness’ of the person to change diet/lifestyle

The basic principle of a health behaviour change is that people hold a range of beliefs about their problems and behaviours. They range between those who do not acknowledge that there is a problem, those who acknowledge that there is a problem but are not ready to act and those who understand and make efforts to act but are unable to persist with desired actions. A careful assessment of an individual’s readiness or preparedness to change can help a healthcare provider plan further intervention.

4.6.4 Motivate the person

Health care providers are trained to ‘advise’ and have an inherent desire to set things right for their patients. This rarely helps to bring a change in behaviour. Instead, the aim should be to explore people’s difficulties about changing their behaviour and help them find their own solutions. A therapeutic alliance (Section 4.2.1) is important to understand the person’s point of view and identify the conflicts between how the person behaves and what he/she aims to achieve. The health care providers should encourage the person with whatever efforts he/she is able to make towards a desired change in diet/taking supplements, without any confrontation or external pressures.

4.6.5 Rewarding desired behaviour (in children)

It can be very helpful if children are rewarded for implementing a desired behaviour (e.g. eating nutritious food or taking supplements) to reinforce those habits. The most effective reward is attention from the parents.

4.7 Counselling at the end of TB treatment and on palliative care

4.7.1 Counselling at the end of TB treatment and post-TB treatment

After completing TB treatment, some people have to deal with the possibility of post-TB symptoms or sometimes respiratory disability or sequelae. TB recurrence may happen in a small proportion of patients including those successfully treated. Counselling at the end of TB treatment is necessary to provide people with necessary information on the possibilities of post-TB symptoms, disability or sequelae, or the recurrence of TB; they need to access health care services for follow-up examinations when necessary. The process of counselling should continue to support people to adjust to their health challenges until they are emotionally stable. Counselling aims to provide a safe and trusted space to help people to work through their inner fears and apprehensions.

Patients and family members often need emotional support to face the losses associated with post-TB disability. People who suffer from post-treatment debilitating complications may also experience adverse psychological, social and financial impacts. It is extremely important to monitor their adjustment to compromised health status. It may take up to several months before they are able to completely recover their emotional health. During this period, counselling and other forms of social and occupational support can be of tremendous help.

4.7.2 Counselling on palliative care

As discussed in Section 6, assessment and relief of psychological, social and spiritual distress of patients and family caregivers are critical parts of palliative care for people affected by TB.

When patients learn that they are likely to die from their illness, they may experience any or all of the following emotions or thoughts in no particular order (56, 57):

Denial: inability to believe, understand or accept the terminal prognosis.
Anger: blaming others or God for the situation.
Bargaining: desperately searching for a way out of the terminal situation.
Depression: feelings of despair, worthlessness, guilt or shame.
Acceptance: finding peace.

In addition to the counselling techniques already described – providing basic psychological support (Section 4.5.1), strengthening social supports (Section 4.5.2), problem-solving (Section 4.5.3), supporting the family/caregivers (Section 4.5.4) – health care providers can do the following (57):

Allow the patient to express strong emotions such as sadness, tearfulness or anger without interrupting or judging.
Express the wish that there were some means to treat the illness.
Assure patients that they will continue to be cared for, that they will be accompanied throughout the illness and that any discomforts will be treated.
Ask whether the patient would like spiritual support and arrange for an appropriately trained spiritual supporter if requested by the patient.
Assess the patient for symptoms of anxiety or depression. If these symptoms are in excess of what would normally be expected in this situation, consider treating. Refer for mental health services only if such services are easily and quickly accessible by the patient.
Prior to the patient’s death, assess family members for bereavement risk (e.g. history of mental illness, difficult and emotionally charged relationship with the patient) (58).
Make bereavement support available to the family via the palliative care team, a community-based bereavement support group, or a social worker (59).
In the course of bereavement support, watch for signs and symptoms of prolonged grief disorder (e.g. more than 12 months of difficulty in accepting the death and clinically significant impairment in social or occupational functioning). Refer to a mental health specialist if suspected (58).
Implement resilience-promoting programmes within palliative care or DR-TB teams such as regular sharing of difficult cases, memorial ceremonies for deceased patients, regular social activities.

Provide information and education to patients, as follows:

Educate the patient about common reactions to disability or terminal conditions. The following statements are some examples:
People in similar situations may react in different ways. Some people show strong emotions while others do not.
It is all right to feel sad and even cry; it does not mean you are weak.
People who do not cry may feel the emotional pain just as deeply as others but have different ways of expressing it.
There are no right or wrong feelings. Sometimes you might feel very sad, and at other times you might feel better.
People who suffer from debilitating complications after treatment may also experience adverse psychosocial and financial impacts. It is extremely important to monitor their adjustment to compromised health status; it may take up to 6 months before they are able to recover their emotional health completely. During this period, other forms of social and occupational support can be of tremendous help.
Health care providers also need to be mindful of patients’ cultural and religious beliefs. Spiritual distress and existential concerns should be treated with the same level of priority as psychosocial distress and physical pain. Support may involve a spiritual caregiver.
If a person presents with severe symptoms of distress, or is unable to sleep or eat, or there are signs of mental disorders (e.g. substance use disorders or depressive disorders) he/she should be referred to mental health services.
Patients and family members often need emotional support to face the losses associated with disability, dying and bereavement. In cases where a patient dies, the family may need to be supported through the bereavement periods. Some bereaved family members may develop complicated grief requiring specialist treatment. Community support can also be mobilized to sustain bereaved family members.
Providing support to people facing disability or death can be extremely distressing for health care providers themselves. They also need to be supervised and supported within their teams. NTPs should encourage self-care and staff support strategies, such as regular sharing of difficult cases, memorial ceremonies for patients who have died, regular social activities for palliative care team members, regular exercise and other supports.