Educating Evaluating And Selecting Living Kidney Donors PDF Download

This dissertation conceptualizes and explicates a new, comprehensive definition of patient burden that encapsulates the experiences of patients seeking episodic medical care by exploring the lived experiences of living kidney donors. Historically, patient burden definitions have focused on disease management and treatment, surrogacy, and caregivers. However, these definitions have conceptual gaps that omit burden elements critical to understanding patients' experiences when seeking episodic care. Drawing on existing burden definitions, living kidney donor experiences, and concepts from minimally disruptive medicine and the theory of planned behavior, I developed a comprehensive definition of episodic patient burden and a preliminary descriptive theory of unanticipated patient burden. Two studies investigated the experiences of living kidney donors during the pre-donation evaluation. The pre-donation evaluation is one of the most critical steps of living kidney donation and requires potential donors to undergo significant testing. The evaluation can come with substantial burden and may cause potential donors to drop out of the donation process. Study 1 analyzed 243 blog posts from potential donors who were in the pre-donation evaluation. In Study 2, I interviewed 30 living kidney donors who were either in the pre-donation evaluation or who had been disqualified during the evaluation. The blog posts and interview transcripts were analyzed using grounded theory. Attention was paid to credibility, dependability, confirmability, and transferability to ensure study rigor. Additionally, member checking was utilized with the interview study to ensure accurate representation of the participants’ feelings and responses. Both studies confirmed the presence of five types of burdens - communicative, relational, emotional, systemic, and physical. Factors that facilitated persistence in the evaluation process, such as having a desire to help, access to information, faith, leaning on others, and keeping decisions private, were also identified. These facilitators were problem-focused or emotion-focused coping mechanisms that helped potential donors manage and mitigate burdens. Drawing on these findings and concepts from minimally disruptive medicine and the theory of planned behavior, I developed a preliminary descriptive theory of unanticipated patient burden. The descriptive theory explains the influence of burden, workload and capacity, perceived behavioral control, coping mechanisms, and social norms on attitude toward donation and intention to persist with donation. The descriptive theory begins with the concepts of anticipated and unanticipated burden. When patients enter a medical encounter, such as living kidney donation, they anticipate a certain level of burden. However, if the level of burden negatively violates their burden expectations, patients experience unanticipated burden. This unanticipated burden effects workload and capacity. As the workload-capacity balance is disrupted, individuals' perceived behavioral control influences which type of coping mechanisms is applied. When individuals have high perceived behavioral control, they engage in problem-focused coping mechanisms which help them address the effects of burden by alleviating that burden. When patients have low perceived behavior control, they are more likely to engage in emotion-focused coping which mitigates the emotional effects of burden but does not address the burden.