Pediatric kidney failure is a relatively rare but devastating medical condition associated with a high degree of disease-related burden, but little is known about children's lived experiences. Finding ways to better understand their experiences can lead to improvement in direct patient care, health-related quality of life (HRQoL), and long-term functioning. Arts in Health (AIH) may be one means of understanding children's lived experiences. A retrospective review of a creative, writing-based AIH project by pediatric patients on hemodialysis was conducted. A qualitative directed-content analysis identified five main themes, including physical shackle, feeling mental and emotional distress, relying on a hemodialysis machine, dealing with problems, and feeling different. This study elucidates the lived experiences of children with chronic kidney failure by validating patients' experiences and highlighting their resilience.
Keywords: Arts in Health; creative writing; lived experience; pediatric kidney failure; qualitative research; quality of life.
Copyright© by the American Nephrology Nurses Association.