The Voice of people living with mycobacterium ulcerans (Buruli ulcer) disease: a grounded theory to understand the illness experience and support needs of people living with mycobacterium ulcerans disease in a rural district of central Ghana.

Abstract

Mycobacterium Ulcerans (also known as Buruli Ulcer) is a rare skin disease which is prevalent in rural communities in the developing world mostly in Africa. Even though the mortality rate is low morbidity and consequent disabilities which affect the quality of life of sufferers is very high. If the disease is reported early treatment is available but many people receive help late in the disease process. Many reasons have been given in the literature why people receive treatment late. The aim of this study was to explore the experiences of people living with Buruli ulcer in a rural district in central Ghana in order to understand their diagnosis and support needs. The study was qualitative in design and used Glaser‟s version of grounded theory. It consisted of semi-structured and unstructured interviews, participant observation, conversation with opinion leaders, traditional healers, people living with Buruli ulcer (who were not part of the study) and a focus group interview with six health care professionals. The Dermatology Life Quality Index (DLQI) tool was also used to determine the quality of life of people living with Buruli ulcer in the study area. Three principal categories of Delayed treatment, Quality of life as a mirage and Seeking to be myself and a Basic Social Psychological Problem (BSPP) of Reliving the trauma of my ulcer were derived. These led to an encompassing core category of My needs matter. The theory explains the needs of people living with Buruli ulcer and that this followed a three stage process whereby Delayed diagnosis was the cause of the BSPP, Quality of life as a mirage the consequences and Seeking to be myself as the strategies required to deal with the BSPP of Reliving the trauma of my ulcer. How to deal with the consequences of this disease and the approaches to dealing with the needs of this vulnerable group have also been explored. The outcome of this thesis and its contribution to knowledge is a theory which explains the needs of people in the early stages of and living with Buruli ulcer and why their needs matter.