Our interviews show that a dichotomy exists between the interpretations by patients and healthcare providers of "supervision and patient support."
In order to better support people with TB during their treatment, the healthcare system and its employees must appreciate that TB disease affects all aspects of individuals' lives, and must provide treatment programmes which recognise this. A focus by the healthcare system and its employees on a biomedical model of treatment, concentrating primarily on accurate diagnosis and provision of curative medicines, may show high levels of treatment success as measured by routine programme statistics, but this success is often at a considerable cost to patients. Study participants report that the burden of treatment for TB is high, particularly in terms of difficulties with social and psychological aspects of undergoing treatment. Whilst the Stop TB strategy requires that these aspects are addressed in a more patient-centred approach to TB care, they are not addressed or fully appreciated by the current approach to TB control in Nepal, although there is now movement towards a national strategy for a more patient-centred approach.
Informal flexibility in treatment supervision is welcomed by patients and has meant that a significant barrier to seeking and continuing with effective TB treatment is reduced. The results also support evidence provided by studies in other low-income countries that by incorporating a degree of flexibility in treatment supervision, one of the significant barriers to effective TB care can be removed [6
]. The feasibility of incorporating this approach into treatment policy in Nepal, whilst ensuring that it does not allow healthcare providers to compromise on patient care, should be explored.
Our findings support current literature which reports that health personnel involved in TB care are lacking in basic communication skills [7
]. Effective communication and the establishment of good working relationships between those with TB and healthcare providers, allowing patients to feel they have an active role to play in their treatment as encouraged in the Stop TB guidelines, should underlie TB healthcare provision. This is supported by research which shows that changing professional practice, leading to improved quality of professional-patient interactions results in an improvement in treatment adherence and completion [8
At diagnosis, an extended period of consultation with more information being provided regarding TB and its treatment would begin to establish a firmer relationship between service users and providers. Discussion about the medication the newly diagnosed individual is to receive, an explanation of supervision and the importance of continued adherence would reassure patients and improve their confidence in the TB treatment programme. Improved awareness and understanding would also increase the sense of empowerment that individuals with TB feel in their roles as active participants in the treatment process.
Those receiving treatment often feel that they currently cannot approach healthcare workers with their concerns and problems during treatment. Establishing a better working relationship, in which the patient feels s/he is an active participant, would help to improve this situation. It would mean that problems which may arise during treatment as a result of medication side-effects or other unrelated issues would not go unanswered, as is currently often the case. This is supported by studies in other low-income countries which show that where those receiving treatment have an improved understanding of their drug regimen, they default less, and are more likely to approach healthcare workers if problems arise [10
Looking to close family members for support during treatment is not unique to those in Nepal [11
]. Promoting increased knowledge and awareness of a disease and its treatment within a patient's family should form a key part of effective healthcare policy for treatment of TB, as well as other communicable diseases. A better understanding of TB and its treatment within the families of those undergoing treatment would allow both parties to feel that they could share their concerns and problems more openly. This would help to remove the sense of isolation from close family which respondents reported as being the most difficult aspect of their treatment. The intensive phase of treatment is the time when those receiving treatment require most support. An opportunity for those receiving treatment and close family members to receive counselling together in consultation with a healthcare worker following diagnosis during this time would allow both these individuals to receive, and families to provide, more support during the treatment programme.
In those cases where patient support is to be family-based, healthcare staff should not view this arrangement as one which absolves them of responsibility to an individual with TB. For family based DOT to be successful requires that the healthcare centre and staff supervise and support the family members responsible for supporting the individual undergoing treatment. Provision of counselling both to those receiving treatment and those who are to be supporting treatment is essential to ensure appropriate support. This would not only improve confidence in treatment but also allow treatment to become a partnership between the patient and family members, enabling a higher level of support, and improving the treatment experience of all concerned.
Individuals receiving TB treatment say that they view a lack of understanding of TB within both their family and the wider community as a major reason why the treatment period is one characterised by a distinct sense of isolation. Providing a support network during treatment which gives those undergoing treatment the opportunity to speak to other patients currently receiving treatment is one way that patients feel this sense of isolation can be reduced. These groups could be established without placing significant increased demand on the healthcare centre or its staff in terms of time or resources. This approach has been documented in the literature as improving the treatment experience for those receiving TB treatment [12
]. The feasibility of a similar approach in Nepal warrants further investigation.
Our findings add to the evidence which highlights issues of stigma, poor understanding and awareness of TB and problems with effective service provision as being major reasons why many people with TB delay seeking TB diagnosis and treatment, affecting their treatment prognosis as a result [13
]. Interviews with TB patients and wider community members show that it is healthcare workers that people look towards to raise understanding and awareness of TB. Investing more time in providing patients with full and clear explanations about TB and its treatment has been documented as being an effective method of raising patients' levels of motivation and promoting treatment adherence [15
]. This research supports these findings, adding that where proper information is not given, patient confidence in their treatment programme and by extension the healthcare centre and its staff is low.