Challenging drug-resistant TB treatment journey for children, adolescents and their care-givers: A qualitative study

Abstract

Background Childhood multidrug-resistant TB (MDR-TB) still affects around 25000 children every year across the globe. Though the treatment success rates for drug-resistant TB (DR-TB) in children are better than adults, children and adolescents face unique hurdles during DR-TB (MDR-TB, Pre-XDR TB and XDR-TB) treatment. This study aimed to understand the patients, guardians and healthcare providers’ perspectives about DR-TB treatment journey of patients and caregivers. Methods This is a qualitative study involving in depth-interviews of purposively selected adolescents (n = 6), patients guardians (for children and adolescents, n = 5) and health care providers (n = 8) of Médecins Sans Frontières (MSF) clinic, Mumbai, India. In-depth face to face interviews were conducted in English or Hindi language using interview guides during September-November 2019. The interviews were audio-recorded after consent. Thematic network analysis was used to summarize textual data. ATLAS.ti (version 7) was used for analysis. Result The age of adolescent patients ranged from 15–19 years and four were female. Five guardians (of three child and two adolescent patients) and eight healthcare providers (including clinicians- 2, DOT providers-2, counselors-2 and programme managers-2) were interviewed. The overarching theme of the analysis was: Challenging DR-TB treatment journey which consisted of four sub-themes: 1) physical-trauma, 2) emotional-trauma, 3) unavailable social-support and 4) non-adapted healthcare services. Difficulties in compounding of drugs were noted for children while adolescents shared experiences around disruption in social life due to disease and treatment. Most of the patients and caregivers experienced treatment fatigue and burnout during the DR-TB treatment. Participants during interviews gave recommendations to improve care. Discussion The TB programmes must consider the patient and family as one unit when designing the package of care for paediatric DR-TB. Child and adolescent friendly services (paediatric-formulations, age-specific counselling tools and regular interaction with patients and caregivers) will help minimizing burnout in patients and caregivers.

The Impact of Tuberculosis on the Well-Being of Adolescents and Young Adults

“…As compared to first-line therapy, however, second-line medications are associated with more frequent, diverse, and harmful adverse events. A few physical effects are particularly traumatizing for AYAs, as described in a qualitative study in Mumbai, India by Das et al [41]. First, adolescents experienced physical pain and hearing loss from injectable agents.…”

“…Independent of underlying mental health challenges, the negative impacts of TB often lead to negative attitudes, depressive symptoms, behavioral changes, and psychosomatic symptoms [41,60]. Psychological trauma may relate to prolonged treatment courses, such as for DR-TB; pill burdens, particularly for DR-TB and/or HIV co-infection; pain from injectable medications or procedures; coping with adverse effects of treatment; and anxiety about their health.…”

“…In interviews conducted by Chiang et al in Lima, AYAs treated for drug-susceptible TB and their caregivers predominantly described their mood throughout their illness course as "down," "little interest in things," "depressed," "bad," and "sad" [5]. In a qualitative study conducted in Mumbai, India, Das et al similarly reported that AYAs receiving treatment for DR-TB felt irritated and sad that they had TB, particularly if they had previous TB episodes and now had more complicated disease [41]. AYAs and family members interviewed by Das et al felt traumatized, both physically and emotionally, by the intense treatment regimen.…”

“…This stigma can be experienced in three ways: (1) The anticipation that someone will enact stigma toward oneself; (2) the experience of another person treating oneself differently and/or discriminating against them; and (3) a loss of self-esteem, fear, and/or shame. TB stigma associated with fear of TB transmission also often extends well beyond the infectious period and is intertwined with the stigma associated with other conditions, such as HIV infection, illicit drug use, migration, and poverty [41,52,[65][66][67].…”

India should speed up access to bedaquiline-based all-oral regimens, not procrastinate further

“…Given that monitoring for hearing loss is virtually nonexistent in most parts of India, the use of injectable agents is far more dangerous than that of the new oral drugs, whose safety has been clearly demonstrated at all age groups and even when given in combination. [ 6 ]…”