Experiences of participation in patient's with infective endocarditis: a qualitative study

Abstract

Abstract Funding Acknowledgements Type of funding sources: None. Background Infective Endocarditis (IE) is a life-threatening disease with increasing incidence worldwide. An important aspect in a patient’s course of illness is having a close and understanding caregiver. Receiving support from a partner or spouse has been found to be associated with increased survival and lower recurrence of heart diseases. Likewise, the caregiver may be able to experience positive emotions and personal growth by being an important part of the patient’s course of illness. Previous studies have explored patients’ and caregivers’ experiences with participation during the patient’s course of illness. To our knowledge, these perspectives have not yet been studied in patients with IE and their caregivers. Purpose The purpose of this study was to explore and elucidate patients with IE and their caregivers’ experiences with each other’s participation during the patient’s course of illness including hospitalization and recovery at home. Methodology The design was a holistic single-case study, where patients with IE and their caregivers were the target of interest. The empirical data was collected using qualitative, semi-structured dyadic interviews where the participants were interviewed in pairs. Theory-driven and data-driven coding was used as the analytical tools in the analysis of the data. Results The empirical data suggest that social support plays a significant role in the participants’ lives and course of illness, in which emotional support, physiological and practical assistance, as well as attitude transmission accounted for the greatest sources of impact. Important factors to the psychological well-being of participants were spending time with family members and maintaining a positive outlook on life. In light of theories of coping in social psychology, some participants reported using emotion-focused coping, problem-focused coping and protective buffering coping, whilst others did not use these. The majority of the caregivers reported that the course of illness did not have an impact on their working life and social relations, while some stated that it had a negative impact on their work, finances, mental and physical energy and social relations. An additional insight was given as the participants shared their thoughts on a need for psychological counseling and their experiences with compassionate healthcare professionals. Conclusion: The study concludes that the participation of patients with IE and their caregivers in the course of illness played an important and positive role in their lives. As such, it could be advised that healthcare professionals should focus more on how patients and their caregivers cope both individually and together in the course of illness. Understanding their perspectives could have implications on how healthcare professionals plan health measures to improve outcomes for both the patient and the caregiver.