A life-changing process when living with chronic kidney disease: A qualitative study

BackgroundPatients with chronic kidney disease and their family members experience a number of lifestyle changes caused by the illness. The value of advance care planning includes understanding health status and options for future care, communication between close family members, and identification of wishes and preferences for care and treatment in relation to family and everyday life.ObjectiveExplore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment.DesignAn explorative study using a qualitative method with a phenomenological-hermeneutic approach.ParticipantsTwelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members.ApproachIndividual semistructured interviews with a narrative approach were conducted between August 2021 and March 2022. The data were analysed using Ricoeur's interpretation theory on three levels: naive reading, structural analysis and critical interpretation and discussion.FindingsOne main theme was generated: Family dynamics in a life-changing process. From this, three subthemes were derived: Living in an ordinary life placed in a waiting position, The dilemma of readiness to share and Feelings of being left alone.ConclusionThere are changes in family roles and in identity and a desire to maintain the known and ordinary life. Living with chronic kidney disease as a part of daily life is managed differently in the family, which can lead to feelings such as sadness, frustration and loss of shared life and resilience.

Automated summary

This study explored the experience of patients with chronic kidney disease and their families in everyday life and the decision-making process regarding treatment options. The findings revealed changes in family dynamics and a desire to maintain a familiar and ordinary life. However, the management of chronic kidney disease as part of daily life varied within families and could lead to feelings of loneliness, frustration, and loss of shared life.