Through the Lens of Chronic Kidney Disease: A Qualitative Study of the Experiences of Young Women Living With CKD

Background: Young women may be particularly vulnerable to the negative psychosocial consequences of living with chronic kidney disease (CKD). To date, little is known about how women themselves experience and manage their illness. Objectives: This study explored the experiences of young women living with CKD. Design: Qualitative descriptive study. Setting: Nephrology program in an urban setting in Ontario, Canada. Participants: Women with category G1-3 glomerular-based CKD between 18 and 40 years of age. Methods: Focus group discussions guided by semi-structured interview questions. Qualitative content analysis was used to analyze interview transcripts. Results: Eleven women participated in 3 separate focus group discussions. Participants described living life through the lens of CKD, which was the central theme unifying their experiences of encountering CKD, re-encountering CKD, and getting on with life. Life decisions significant to women like pursuing a career or motherhood were often colored by CKD, particularly by illnessrelated challenges, such as unsatisfactory health care support and the physical implications of chronic illness. The women used a variety of strategies including seeking information and relying on supportive people to mitigate these challenges. Although these strategies sometimes enabled them to balance the demands of illness with other life priorities, the lack of resources directed toward their unique needs as young women with CKD often caused them difficulties in managing their illness. Limitations: Participants were from one nephrology program in an urban setting and were well educated overall. Their experiences may not be reflective of young women in other settings or from diverse backgrounds. Conclusions: The women's emotional well-being and life choices were considerably influenced by CKD. Although the women were often able to manage challenges associated with CKD, they acknowledged the need to seek additional professional resources to complement their own self-identified strategies. As the women sought out these supports, they identified gaps in resources specific to women with CKD. This article summarizes recommendations from their perspective.