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Table 3 Themes and subthemes from patient interviews and patients’ views of their influence on MDR-TB outcomes. (Brackets indicate the number of patients highlighting a subtheme in their interview, bold text indicates alignment of opinion between patients and HCPs)

From: Improving outcomes for multi-drug-resistant tuberculosis in the Peruvian Amazon – a qualitative study exploring the experiences and perceptions of patients and healthcare professionals

Theme

Facilitators to achieving optimal outcomes (frequency out of 14)

Barriers to achieving optimal outcomes (frequency out of 14)

Personal Factors

− High standard patient knowledge, understanding of resistance and of the importance of adherence to the end of the treatment schedule (10)

Education from a number of sources including the HCP, peers and internet (8)

Perception of MDR-TB as a dangerous and contagious illness (11)

− Belief in pharmaceutical medications (9)

− Positive perception of the future and hope in a cure (10)

− Positive patient attitude and a strong desire to be cured (7)

− Psychological resilience (11)

− Poor quality or limited knowledge (10)

− Contradictory advice/education from peers/family/HCPs (10)

− Belief in natural medicines more than/as much as pharmaceutical medications (7)

− Disbelief/distrust of pharmaceutical medications (11)

Myths and misinformation (10)

− Negative patient attitude (6)

− Change in patient identity, not feeling “normal” (9)

− Experience/fear of stigma or discrimination (11)

Psychological impact of MDR-TB (12)

− Isolation (11)

Other comorbidities (4)

External Factors

− Family support (emotional/psychological/nutritional/financial) (11)

Family willing to make sacrifices to help patient (8)

− Education of family to empower them to help patient (9)

Religion as a source of psychological support (6)

− Holistic care provided by HCP team (10)

− Individualised care, patient feeling involved in treatment planning (9)

− Pragmatic approach to providing high standard care in a resource poor setting (5)

− Socioeconomic impact of illness and treatment (14)

− Poor nutrition (10)

− Resource poor health system (7)

− Lack of political will to tackle MDR-TB/TB on a regional/country level (6)

− Impact of illness on family (socially/psychologically/financially) (12)

Disorganised care (7)

− Difficulty accessing treatment (8)

Clinical Factors

Feeling mentally and physically prepared for the treatment (9)

− Strategies to reduce nausea due to treatment (10)

Diagnosis at late stage of disease (7)

− Side-effects of the treatment (14)

− Long duration of treatment (11)

HCP-patient Relationship (13)

− Good, open and trusting HCP-patient relationship (13)

− Patient feeling comfortable sharing worries and concerns with HCPs without fearing judgment (12)

− Patient feeling valued (11)

− Good communication with HCP (12)

− Patient fear/experience of stigmatisation/discrimination from HCPs (5)