The medication experience of African-American women living with kidney-related diseases: A phenomenological inquiry

Abstract

Chronic kidney disease affects 37 million Americans (14.0%), results in poor quality of life and mortality, is costly for the US Healthcare system and disproportionately impacts Black Americans. The optimal time to intervene in the course of chronic kidney disease is early, making treatment of the disease and risk factors, often with medications, a priority. The African-American woman’s lived experience lies at the intersection of race, gender, and other relevant social factors impacting medication use. Knowledge of the experience of medication taking of these women in the context of their everyday lives may shed meaningful insight into person-centered interventions aimed to improve patients’ use and experience with medications. Objectives are (1) Explore the medication experiences of African-American women taking medications for chronic diseases related to chronic kidney disease, and (2) Reveal individuals’ prioritization of medication-related decisions in the context of their everyday lives. A phenomenological approach was undertaken. One-on-one interviews were conducted with seventeen African-American adult women taking at least one medication for chronic kidney disease or a chronic disease that places them at high risk (hypertension or diabetes mellitus) for chronic kidney disease. The existential structures of the lifeworld as described by French Philosopher Merleau-Ponty were used to guide thematic analysis of data and was based in traditions of phenomenology. Five themes of (1) guided by a personal agency with medications, (2) sense of personal duty to care for self and others, (3) making sense of the body and self with medications, (4) staying on track with medications and with life, and (5) desire to living freely with medications and from their constraints are described. Priorities with medication taking behaviors in daily living experience were revealed to be: (1) safety and security, (2) singularity of experience, and (3) autonomy and vitality. Patient-centered care needs to consider the patient and their medication taking from the perspective of their priorities and daily living. Health care professionals need to practice self-awareness and listen attentively to understand the experiences their patients have with their medications. Knowledge of the medication experience can then inform strategies and interventions that are meaningful to patients.