The emotional experiences of participants in a cardiovascular research study

Abstract

In recent times, the World Health Organisation (WHO) has recommended health programmes and interventions for the management and control of various risk factors of cardiovascular disease. This gave rise to an increasing amount of health research being conducted globally and in South Africa, but the psychological impact of the health research programmes has hardly been explored. Globally, there is a wealth of research being conducted on the psychological effects, including the emotional experience of participants attending medical screening or health screening, as the experience at screening may influence future health behaviour. However, there is a lack of research being performed on the emotional experiences associated with taking part in health research. While the aim of medical screening is the clinical diagnosis of disease, the aim of health research is often not to diagnose a disease, but rather to find the best way of disease prevention or management. However, the possibility that an overlap exists between the emotional experiences of medical screening and health research should be investigated. Emotional experience refers to the emotions or emotional reactions the participants go through before, during and after a health research process. The importance of a person’s emotional experience of a health research process cannot be overlooked, as it has the potential of posing an ethical dilemma when people who perceive themselves as healthy, may be told they are potentially ill. This can occur in health research, although the aim in this study is not to include any clinical diagnosis or reference thereof, but participants might still be expectant of obtaining such information when going through a health research process. What individuals perceive as emotional experiences, are seen as valid reflections of their subjective understanding of their emotions. Contradicting evidence exists regarding the psychological impact that screening and health research has on participants; where some research indicate that participants experienced adverse consequences, such as anxiety and depression, other studies do not report any adverse consequences and rather highlight the benefits of health screening. Additionally, a great number of research studies indicate short-term adverse consequences, whilst others report no long-term impact of health screening. Much less literature, especially in the South African context, could be found regarding the emotional impact of participating in medical screening and in particular in health research screening programmes. Thus the aim of the study was to explore the emotional experiences of participants who took part in the African-PREDICT health research process. A qualitative research method with a descriptive approach was used. Sixteen participants (n=16) were recruited and took part in the study. Data were collected through semi-structured interviews, which were transcribed and analysed by means of inductive thematic analysis using Grounded Theory. Four main themes were identified: 1) Primary emotional experience; 2) Secondary emotional experience; 3) Emotion linked to the research process; and 4) Impact of emotional experience on perception. The findings firstly indicate that the most prominent primary emotion describing participants’ overall experience of the health research process was happiness. Secondly, participants experienced specific emotions, of which comfortability (level of emotional comfort) and irritability were mostly expressed. The third theme reflected emotions experienced by the participants before, during and directly after the health research process. Lastly, there were various aspects which had an impact on the participants’ perception of the health research process, including past screening experiences, previous health scares, adverse consequences of the use of various instruments, and the experience of good service during the health research process. This study has therefore provided additional information on how participants experience cardiovascular research and could inform ways to improve emotional support of participants during the health research process to meet ethical and moral obligations and to promote the participant returning for follow-up visits