Abstract
Chronic kidney disease is a global public health problem associated with substantial morbidity, mortality, and health resource utilization. Living donor kidney transplantation offers the best and most cost effective clinical outcomes for persons diagnosed with end-stage renal disease. However, there remains a dearth of empirical literature documenting the experiences of living kidney donors (LKD) from the donor's perspective. This knowledge is essential for the development and delivery of patient-centered care to LKD. The purpose of this study was to address the gap in knowledge of donor experiences from the LKD's perspective. The investigation was guided by the following research questions: 1) How do LKD describe their experiences? 2) What is the perceived impact of being a kidney donor on the life of the donor? 3) What factors do LKD identify as having an influence on their donation experience? A qualitative descriptive research design was employed. Recruitment strategies included posting a recruitment flyer to online LKD support groups, and snowball recruitment. Rubin and Rubin's responsive interviewing model was used to guide data collection during in-depth interviews. Thematic analysis of the interview contents was performed to reveal emerging themes and influencing factors of the donation experience. The sample consisted of 20 adult LKD (15 females; 5 males) who received their donation related care at transplant centers located within the U.S. from 1995 to 2016. The mean number of years since donation was 9.5 years. Major themes and corresponding sub-themes were identified for each research question (RQ). Three major themes were identified in response to Research Question #1, investigating how LKD describe their experiences: A Call to Action, Preparing for the Adventure, and Dealing with Unexpected Symptoms. Two major themes were identified for Research Question #2, inquiring about the perceived impact of being a kidney donor on the life of the donor: An Impetus for Change, and Letting Go. The influencing factors identified by LKD for Research Question #3 included: Donor Agency, Social Influences, Healthcare System Issues, and Financial Influences. Limitations of this study included: a small, homogenous sample, recall bias, self-selection bias, and social desirability bias. Although not generalizable, the descriptions obtained from this investigation have illuminated several areas for improvement of the care provided to LKD. In conclusion, the consensus among participants was that living kidney donation was a positive experience that enriched their lives, and the lives of their recipients. Implications for theory, practice, donor education, nursing education, health policy, and future research are discussed. Keywords: living kidney donor, living kidney donor experiences.