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Table 6 Carer themes representing factors influencing leprosy TOs

From: Improving treatment outcomes for leprosy in Pernambuco, Brazil: a qualitative study exploring the experiences and perceptions of retreatment patients and their carers

Theme

Facilitators of optimal TOs (frequency out of 13)

Barriers to optimal TOs (frequency out of 13)

Personal factors

â–ª Belief in pharmaceutical treatment (10)

â–ª Use of an education source (12)

â–ª Health is important to the patient (7)

â–ª High standard patient knowledge on resistance or the importance of compliance (11)

â–ª Normal nature or lifestyle of participant did not change (11)

▪ Perceptions of leprosy as ‘dangerous’ or ‘contagious’ (10)

â–ª Positive patient attitude, desire to be cured (9)

â–ª Positive perceptions of the future, and hope in a cure (13)

â–ª Psychological resilience (7)

â–ª Witnessing another getting better or worse (7)

▪ Belief medication is ‘strong’ (2)

â–ª Change in the normal nature/appearance/lifestyle of patient (6)

â–ª Change in identity, feeling labelled (1)

â–ª Contradicting sources of education (7)

â–ª Distrust of pharmaceutical medications (4)

â–ª Experience/ fear of stigma and discrimination (3)

â–ª Feeling helpless (1)

â–ª Isolation or distance (4)

â–ª Myths and misinformation (8)

â–ª Other comorbidities (6)

â–ª Poor quality/limited knowledge (11)

â–ª Psychological impact of leprosy (11)

External factors

â–ª Ease of access to treatment (14)

â–ª Education to empower social circle to help the patient/reduce stigma (9)

â–ª Social circle support (emotional, nutritional, psychological, financial) (11)

â–ª Family makes sacrifices for the patient (6)

â–ª Holistic care by HCP team (4)

â–ª Individualised, patient-led care (5)

â–ª Pragmatic approach to a high standard care in a resource scarce setting (1)

â–ª Religion as a source of psychological support (10)

â–ª Care is not holistic (2)

â–ª Difficulty accessing treatment (4)

â–ª Disorganised care (2)

â–ª Financial impact (7)

â–ª Impact of illness on social circle (social/psychological/financial) (5)

â–ª Impact on aspirations for the future (4)

â–ª Infected family members (3)

â–ª Lack of conversation about leprosy with patient (4)

â–ª Lack of political will to tackle leprosy (3)

â–ª Living in the countryside away from services (2)

â–ª Impact on employment (6)

Clinical factors

â–ª Contact tracing (3)

â–ª Mental/physical preparation for treatment (9)

â–ª Seeing/feeling improvement (7)

â–ª Strategies reducing side effects (5)

â–ª Late diagnosis (3)

â–ª Long duration of treatment, high frequency doses (11)

â–ª Painful/distressing diagnosis (3)

â–ª Progression or persistence of disease (9)

â–ª Side effects of treatment (5)

HCP-patient-carer relationship

â–ª Clear information provided (diagnosis, treatment, prognosis) (7)

â–ª Good communication with HCP (6)

â–ª Good quality care (7)

â–ª Good, open, trusting HCP-patient-carer relationship (8)

â–ª Patient feeling valued (3)

â–ª Carer feels HCPs are important in their care (12)

â–ª Clear information not provided on diagnosis, treatment and prognosis (4)

â–ª Patient fear or experience of stigma or discrimination from HCP (1)

â–ª Poor communication/relationship with HCP (4)