A qualitative insight of HIV/AIDS patients' perspective on disease and disclosure

Background Understanding patients' knowledge and belief towards disease could play a vital role from an outcome perspective of disease management and HIV/AIDS patients are not exception to that. Methods Qualitative methodology was used to explore Malaysian HIV/AIDS patients' perspectives on disease and status disclosure. A semi structured interview guide was used to interview the patients and a saturation point was reached after the 13th interview. All interviews were audio-recorded and subjected to a standard content analysis framework. Results Understandings and beliefs towards HIV/AIDS and Perspective on disease disclosures were two main themes derived from patients' data. Beliefs towards causes and cure emerged as subthemes under disease understandings while reasons for disclosure and non-disclosure were resulted as main sub-themes under disease disclosure. Majority of patients apprehended HIV/AIDS and its causes to acceptable extent, there were elements of spirituality and lack of education involved with such understandings. Though beliefs existed that knowing status is better than being ignorant, fear of stigma and discrimination, social consequences and family emotions were found important elements linked to disease non-disclosure. Conclusions The outcomes provided basic information about patients' perceptions towards disease and status disclosure among HIV/AIDS patients which can help in the designing and improvising existing strategies to enhance disease awareness and acceptance and will also serve as baseline data for future research further focusing on this subject.