Lived Experiences of Older Adults with Advanced CKD and Their Caregivers

Key Points Older adults with advanced CKD and their caregivers experience a variety of stressors that substantially affect their well-being. These families use a set of interpersonal and ecological coping mechanisms to deal with the challenges they face. More research on the lived experiences of this marginalized population is needed to identify the mechanisms that promote resilience in these families. Background To date, very little is known about the lived experiences of families affected by CKD, especially regarding the adaptive coping strategies these families use to successfully cope with the chronic stress they must face because of CKD. Methods An exploratory qualitative descriptive study was conducted by recruiting a subsample of adults with advanced CKD participating in the Canadian Frailty Observation and Interventions Trial study and some of their caregivers. As part of this ongoing larger study, 12 adults with advanced CKD and seven of their caregivers ( N =19) completed one focus group discussion that explored topics related to their unique lived experiences as individuals affected by CKD. Narrative data were analyzed using a three-step inductive thematic analysis process. Results Three themes that portray participants' lived experiences were identified, including ( 1 ) experiencing chronic stress because of CKD, ( 2 ) coping successfully with the stress caused by CKD, and ( 3 ) recommendations to improve family well-being. Conclusions Social and health services for families affected by CKD may be more effective in promoting the health, well-being, and quality of life of both adults with CKD and their caregivers if they acknowledge the chronic stressors these families face daily and provide support strategies that help them successfully cope with such stressors.