Understanding the Lived Experiences of Tuberculosis Patients Photovoice

Individuals with tuberculosis (TB) worldwide often experience social stigma and isolation due to the misconceptions of TB. Social stigma is defined as an undesirable or discrediting attribute that an individual possesses, thus reducing that individual's status in the eyes of society. This social stigma is often recognized as an important barrier to successful care. TB in some settings is considered a 'dirty disease' or 'a death penalty' and it is often associated with lower socio-economic status and unclean or undesirable habits or livelihoods. This reveals that TB stigma is one of the associated challenges of being diagnosed with TB.

Photovoice is a participatory action research method using photography as a means to express and share personal experiences in order to promote community change. It is designed to empower members of marginalized groups to work together to identify and enhance their community by telling their stories and having their voices heard. Its' meaning was derived from the acronym VOICE – Voicing Our Individual and Collective Experience. It is a method that has been used worldwide among several health disciplines, diverse populations and age groups. However, to date, there were no TB photovoice studies found that were conducted in Europe thus the lived experience of TB among these populations has yet to be examined.

A survey of current and former TB clients in the Toronto Public Health (TPH) TB directly observed therapy (DOT) Program found that there was a lack of understanding of TB in the general community as well as common misconceptions about TB. An initial study was conducted in Toronto, Canada, which was then replicated in Serveis Clinics, a specialized TB clinic in Barcelona, Spain. Moreover, a subproject centered on paediatric population is ongoing with Hospital Vall d'Hebron-Drassanes and associated with children’s drawings instead of photos.

Recently in the context of the INNOVA4TB project, the idea was to extend the experience and methodology to other participating sites in Europe. The purpose of the TB photovoice projects is for patients to record and share their day-to-day lives and experiences with TB through photos and accompanying text. The overall goal is to increase the understanding, awareness and associated stigma with TB in the community and to inform TB services. In addition, the project aims to assist health professionals, the community, and other TB patients/families understand the lived experience of having TB from diverse perspectives.

Leading partners: SC

Collaborating partners: IFTIP,  IGTP, and CIBERESP

External collaborating partners: Toronto Public Health (Canada), Agència de Salut Pública de Barcelona (Spain), Unitat de Tuberculosi de Drassanes -Hospital Universitari de la Vall d’Hebron (Spain)