This 40-page publication from the World Health Organization (WHO) and the Stop TB Partnership is about empowering and involving patients with tuberculosis (TB) in the management of their disease. It presents the results of a review of the available literature with the intention of identifying possible trends and conclusions and suggesting ways of informing policymakers and further research. According to the executive summary: "The review of documented experience covers the means used to enable patients to take more responsibility for their health and, in particular, for adherence to treatment; organizing TB patients into groups and clubs; ensuring patient-centred TB and general health care; and helping TB patients to use advocacy to improve TB control. It describes the operational definitions of and potential barriers to empowerment and the importance of context, including the characteristics of stakeholders, incentives, the performance of TB programmes and the burden of TB. These issues must be explored carefully in evaluating and planning the scaling-up process."
The document includes the following strategies, among many, for the empowerment of TB patients in improving their capacity to take control of their own care and lives.
- Peer support by TB patients and cured patients: care, monitoring, and/or counselling of TB patients by TB patients, and coaching of vulnerable groups by members of those groups. According to the document, this kind of empowerment demands specific conditions and is not adequate for all aspects of care, but has been successfully used, not only to provide allies in care for health services, but also to foster agency in the behaviours of patients. Particularly cited here are buddy or patient support systems within community 'Directly Observed Treatment or Directly Observed Therapy' (DOT) programmes, which not only support adherence to treatment (including collecting medicine to perform DOTS at home for patients who cannot travel for treatment), but also organise people living with HIV and former TB patients to conduct information giving, teach pill-taking techniques, conduct regular home visits for psychosocial support, and collect data on adherence to treatment for TB centres.
- Advocacy and social mobilisation in support of TB control services: TB patients (mainly cured) provide a positive image of persons affected by TB and of the way TB care is organised. This can include empowering people to advocate for better care and resources. People living with HIV and former TB patients are sometimes both recruited for advocacy action. This may include data collection, pursuing individual case information, organising hospital patients to monitor for uniform care, referring suspected cases, transmitting information to at-risk populations, and acting as treatment 'brokers' or advisors for current patients.
The document analyses what hampers TB treatment including general barriers to accessing health services (geographical, economic, cultural or intra-institutional integration of service problems), particularly for the economically poor, women, and other vulnerable groups; stigmatisation and isolation of and discrimination against TB patients; ‘patient control’ in TB programmes; and belonging to vulnerable groups. Gender differences include self-image, status in both the family and society, access to resources, the manifestation and expression of symptoms and the stigma associated with TB and seeking treatment, negotiating treatment (including provider bias), and compliance to treatment. The document points to programmes that recognise these barriers and either focus on overcoming hampering aspects or match specific interventions for specific populations.
Empowering patients, as stated here, includes motivating, informing, and enhancing patient economic capacity. This may take the form of motivational interviewing, designing culturally sensitive informational tools for patient-centred care, or providing loans or food assistance combined with drug therapy. A model called the informational–motivational–behaviour model is being used to change behaviours for treatment of latent TB in Harlem, United States. In Namibia, a DOTS programme brings people to local centres five days a week for treatment, training in handicrafts and health education, and mutual patient support.
SSelf-help groups (such as TB clubs in Ethiopia, Nicaragua, Bangladesh, and Ecuador) have various structures based on social mobilisation, de-stigmatisation (inclusion of former patients and community leaders), group therapy, support for adherence to treatment, and psychological and financial support from former patients.
The following two approaches to patient-centred care can be used to customise care: "the ‘patient activation’ approach, patients actively take some control, ask questions or speak spontaneously about their concerns. Empowerment need not involve decision-making but must involve an active role in consultation; ...[and] the ‘patient perspective’ approach, patients’ beliefs are elicited and responses made to them. The beliefs might be matched within the consultation or emphasis might be laid on patient-centred behaviour by the health professional, for example, by asking patients open questions about personal or social issues."
The article cites the need for communication skills which may include:
- Involve patients in their own health care.
- Learn more about culture, starting with your own.
- Speak the language, or use a trained interpreter.
- Ask the right questions and look for answers.
- Pay attention to financial issues.
- Find resources and build partnerships.
Another approach, termed 'trialogue', has been identified as being of particular importance in interpersonal communication among providers, patients, and the community in Orissa, India. This approach focuses on changing community attitudes and behaviour through active participation in caring for persons affected by the disease, and through open, honest discussions about fears, prejudices, and problems associated with TB.
The discussion of advocacy as a part of empowerment includes the perspective that "ownership" of response to TB should be transferred from Stop TB and WHO - for example, by encouraging the formation of more TB patient groups and by training them in advocacy skills, such as use of the media to highlight particular issues. Other examples include giving patients a voice on local DOTS committees, in meetings with other stakeholders and in national level campaigns. Internationally, TB Television (TBTV) promotes a charter of patient rights and responsibilities.
This document details lessons learned and gives tables of studies that describe TB patient empowerment interventions; tables of programme evaluations of interventions that aim to strengthen adherence to treatment, strengthen involvment through groups and clubs, institute more patient centred treatment; and a table of tools and methods for assessing the effects of interventions in patients lives.
In concluding, the document asks for stakeholders - non-governmental organisations (NGOs), activists for persons living with HIV/AIDS, and academic institutions - to empower TB patients through:
- understanding patient motivation and the interventions to stimulate it;
- systematic evaluation of current methods of empowerment;
- attention to successes that might be up-scaled; and
- greater involvement of the TB patients themselves, in order to foster the strength of agency of, for example, the community of persons living with HIV/AIDS.
