In view of the high burden of disease, death and suffering associated with TB, Standard 9 of the International standards for tuberculosis care (1) states: “A patient-centred approach to treatment should be developed for all patients in order to promote adherence, improve quality of life, and relieve suffering. This approach should be based on the patient’s needs and mutual respect between the patient and the provider.” In 2016, the World Health Organization (WHO) advocated a people-centred care approach which is focused on, and organized around, the health needs and expectations of people and communities rather than focusing on patients or diseases (2). As a result, a people-centred model of TB care was defined as “an efficient and integrated set of affordable, accessible and acceptable health services, provided in a supportive environment to prevent, diagnose and treat TB” (3).
A people-centred (also referred as person-centred in this section) approach recognizes that TB care should be designed to address the needs, values and preferences – and protect the rights of – the people who suffer from TB in order to ensure successful treatment outcomes and improve their wellbeing and financial risk protection. People-centred or person-centred care “reflects care that is holistic, individualised, respectful and empowering, and considers the person as central to the process of care, encouraging informed, shared decision-making and self-determination. It means that a person and a health-care provider work together, discussing care options, treatment risks and benefits, to reach collaborative care decisions. Rather than being a passive recipient of health-care, the person is an active participant.” (4).
In contrast to a disease-centred approach where the focus was on medication treatment only, a people-centred approach also focuses on supporting people to overcome the social economic, cultural, legal and psychological difficulties that can affect their response to the diagnosis and treatment of TB. Through person-centred care, the patient with TB is the most important person in the care plan; therefore the social and personal needs and preferences of the patient – not just the immediate requirements of medical treatment – are also focused on. This approach should also allow people to know and use their patient rights and fulfil their treatment responsibilities while being treated with respect and dignity and having their values and needs reflected in their treatment and care whenever possible
Person-centred care is defined as “providing care that is respectful of, and responsive to, individual patient preferences, needs and values, and ensuring that patient values guide all clinical decisions”. Pillar 1 of the End TB Strategy (5) clearly endorses this approach which treats patients as the most important element when providing TB treatment.
A people-centred approach focuses on the overall well-being, choices, convenience and safety of the individual patient. Thus, it takes account of the social and personal circumstances of the person, and not just the immediate requirements of medical treatment (6). A people-centred approach helps to build a partnership between the people suffering from TB and health-care providers, allowing care to be adapted to individual patient needs with the goals of improving the ability of patients to take all their medications and curing them from TB. The ability of a person to take all their medications is influenced by a number of factors, namely: the person’s knowledge, attitudes and beliefs about the disease, the treatment and the health-care system; family experiences and beliefs; economic concerns (e.g. the ability of a patient to pay the costs associated with treatment); the health-care system’s ability to support the patient; and available community resources to deal with the stigma and discrimination surrounding TB. These concerns can be resolved by making sure that patients have the support they need to complete their treatment. The types of support are described later in the module.
TB care is not just about the science of treatment but also about human rights and social justice. The ethical values recommended for TB programmes include equity, the common good, solidarity, reciprocity, the harm principle, trust and transparency, the duty to care, effectiveness, efficiency, proportionality, participation and community engagement, respect and dignity, autonomy, privacy and confidentiality (7).
Frequently, TB most strongly affects people who are already marginalized and can worsen existing inequalities and discrimination. The marginalized include persons who are homeless, persons who use drugs, persons living with HIV, people who are incarcerated, indigenous persons and undocumented migrants. These persons experience stigma and discrimination in their day-to-day lives and care must be taken to ensure that this is not worsened in the context of TB. In addition, health-care providers should keep in mind that gender may also be a driver of stigma in people with TB (8).
The violation of human rights of people with TB is well recognized (9, 10). Persons with TB often experience stigma and discrimination in many areas of life, including work, social activities and family life. They may also have difficulties in following medical advice due to social, economic, cultural and legal reasons. Consequently, it is important that the health-care services are aware of all the barriers faced by people affected by TB and provide appropriate and comprehensive social support to help them cope successfully with the hardships of treatment. TB stigma can be defined as the negative labelling or rejection of people with TB, and often also their families, due to stereotyping or other negative traits associated with TB and the affected communities. As a result of a diagnosis of TB, people may experience feelings of shame, self-hatred, guilt or blame which may affect their ability to accept the diagnosis and to follow their care and treatment plans.
Health-care workers may also be prejudiced against people with TB, and this may affect their interactions with patients with TB. They may do things that further stigmatize these patients, either through how they interact with the patient, the language they use or even the practices that are built into the health-care system. If health-care providers are not well supported and TB services lack resources, the health-care workers may feel undervalued, which may reinforce stigma and prevent them from delivering quality care. Fear of infection can also serve as a driver of stigma in health-care workers and may have an adverse impact on their relationships with people affected by TB.
In order to support people with TB during their treatment, health policies must reflect the fact that TB affects all aspects of peoples’ lives. Caring for each person as an individual should be the basis of treatment and care. The following principles can be followed for person-centred care and support (11, 12):
1. Focus on the patient’s concerns and priorities.
2. Refer to the 5 A’s aspects of care: Assess, Advise, Agree, Assist and Arrange.
3. Link the patient with a suitable TB treatment supporter. 4. Screen, assess and manage undernutrition.
5. Recognize and address poverty and food insecurity by linking TB patients to national social protection measures and ensure their inclusion in appropriate national legislation.
6. Organize proactive follow-up and maintain regular communication with the patient in order to work as a team.
7. Involve former patients, peer educators and health-care workers providing support in health facilities or communities.
8. Link the patient to community-based resources and support.
9. Provide integrated care in collaboration with other public health programmes, such as those for HIV, diabetes care, maternal and child health, lung health and mental health services.
10. Assure continuity of care, including palliative and end-of-life care whenever needed.
Although building person-centred high-quality TB care as outlined in the International standards for tuberculosis care will often require additional human resources, a lot can be achieved by training health-care providers to respect patients’ rights and by developing communication skills to involve patients and their families actively in TB care (5, 13, 14).