Experiences of pain and expectations for its treatment among former buruli ulcer patients

Abstract

Buruli ulcer (BU) is one of the 17 neglected tropical diseases for which the World Health Organization has adopted resolutions to improve treatment. BU was previously described as a relatively painless condition; however, recent research has indicated that some patients experience substantial pain. The objective of this study was to explore patients' experiences of pain and their expectations for its treatment. Semistructured interviews were conducted in a BU-endemic region of Ghana. Interviews were held with former BU patients (N = 20) and community controls (N = 19). Former patients were asked about BU-related pain and their expectations for its treatment. The interviews were conducted in October 2014, and were audiotaped, translated and transcribed into English, and then qualitatively analyzed. Of the 20 former BU patients interviewed, 19 (95%) reported experiencing pain, with patients reporting pain as a consequence of the ulcer and wound management. Some participants expressed pain through crying, whereas others did not openly express pain, sometimes because they feared the repercussions of doing so. Patients wanted to receive pain relief; however, many were unable to name a medication. Nonpharmaceutical options were cited as being an alternative. Many BU patients experience pain; however, former patients and community members alike appear to have a limited knowledge about available pain relief. A low-cost alternative to medication may be the use of nonpharmaceutical means for pain relief. Routine pain assessment may reduce patients' fear and unwillingness to express pain. Awareness of such issues will be valuable when implementing a BU pain relief guideline.