Piloting “From the Inside Out” - a toolkit addressing tuberculosis-related self-stigma: A feasibility study

Abstract

Abstract Self-stigma among people who have tuberculosis (TB) can contribute to non-adherence to medication and disengagement from care. It can manifest in feelings of worthlessness, shame, and guilt, leading to social withdrawal and disengagement from life opportunities. Self-stigma may also affect families of those who have TB, or healthcare workers who treat them. However, few interventions addressing TB self-stigma exist to-date. We therefore piloted the delivery of a toolkit of psychosocial interventions using a “train the trainers” approach with six staff members of a TB-focused NGO and partner organisations in Jakarta, Indonesia. These trainers could then disseminate the toolkit among community partner organisations. Local staff involvement throughout the study supported translation and adaptation to enhance cultural and language appropriateness. Over a two-day training-of-trainers workshop, the NGO staff were familiarised with the mode of delivery of the toolkit, which they then delivered via a four-day participatory workshop with 22 representatives of partner organisations working among communities affected by TB. The newly-trained NGO staff delivered the toolkit to the participants, who self-reported significant increases in knowledge and efficacy around TB self-stigma post-intervention compared to baseline (Z = 1.991, p = 0.047). The participants' levels of self-compassion were also significantly higher post-workshop (Z = 2.096, p = 0.036), however, this effect was not maintained at three-month timepoint. There was also a significant increase post-workshop in the participants' Ryff dimensions of psychological wellbeing in the dimension of positive relationships with others (Z = 2.509, p = 0.012) and self-acceptance was significantly higher at 3-month follow-up (Z = 2.877, p = 0.004). Environmental mastery was significantly lower at 3-month follow-up (Z = 2.670, p = 0.008). Observed changes in recipients’ self-reported levels of knowledge and efficacy, self-compassion, and psychological wellbeing may warrant further investigation into the best modalities for toolkit delivery (frequency, dose, duration) and support for individuals as they progress through the TB treatment journey.