Abstract
INTRODUCTION
Person-centred care (PCC) is an internationally recognised priority, and a key underlying principle within MSF projects. PCC ensures that people are involved in their care and treatment decisions, and considers individuals' needs and priorities within service delivery. Clarity is required regarding how this may be implemented within different contexts. Multidrug-resistant tuberculosis (MDR-TB) treatment is lengthy, toxic and insufficiently effective, with recent developments changing the treatment landscape. WHO’s 2019 treatment guidelines include a shorter, 9-11 month-long treatment regimen, and recommends that people with MDR-TB should be involved in the decision around treatment option. We examine what PCC can look like in practice, through the perspectives and experiences of people with MDR-TB and health care workers (HCW) in Karakalpakstan, Uzbekistan.
METHODS
We carried out a qualitative study, comprising 48 interviews with people with MDR-TB (n=24; including repeat interviews with three participants) and healthcare workers (n=20), in Karakalpakstan in June-July 2019. In this setting, MSF and the Ministry of Health collaboratively have provided TB care since 1998. Participants were recruited purposively, to include a range of treatment-taking experiences and professional positions. Interview data were analysed thematically, using coding to identify emerging patterns, concepts and categories relating to person-centred care, with Nvivo12 (QSR International, Melbourne, Australia).
ETHICS
This study was approved by the ethics committees of Uzbekistan and the MSF Ethics Review Board.
RESULTS
People with MDR-TB were unfamiliar with shared decision-making, and felt uncomfortable taking responsibility for their treatment choice. HCW were viewed as having greater knowledge and expertise, and patients trusted HCW to act in their best interests, deferring to them to choose the appropriate treatment. HCW distrusted the effectiveness and appropriateness of the shorter treatment regimen, which may influence who is offered this option. Additionally, HCW had concerns about involving people in treatment choices, preferring that the doctor decide. However, people with MDR-TB wanted to be involved in discussions about their treatment, to have their preference sought, and were comfortable choosing the treatment location, whether ambulatory or hospital-based. Participants felt it important that people with MDR-TB have increased knowledge and understanding about their treatment and disease, to foster their sense of preparedness and ownership of treatment. Involving people in their care was said to motivate sustained treatment-taking, which some felt directly observed treatment (DOT) delivery could undermine.
CONCLUSIONS
There was a preference for doctors choosing the treatment regimen, linked to unfamiliarity with shared decision-making and an imbalance between the perceived knowledge base of practitioners and patients. Involving people in their care, through discussions, information, and preference seeking could foster better ownership and self-responsibility, supporting sustained engagement with treatment, which DOT may contradict. These findings are important with MSF operations working to achieve PCC in practice, highlighting the need for approaches that are context specific and adapted to individuals’ preferences. Programmes should consider more person-centred approaches to treatment delivery, such as community or family DOT.
CONFLICTS OF INTEREST
None declared
