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

ABSTRACT

BACKGROUND: Patients 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. OBJECTIVE: Explore how patients with chronic kidney disease and their families experience everyday life and how they experience having to make choices about treatment. DESIGN: An explorative study using a qualitative method with a phenomenological-hermeneutic approach. PARTICIPANTS: Twelve patients with chronic kidney disease without kidney replacement therapy who were considering their treatment options and eight family members. APPROACH: Individual 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 naïve reading, structural analysis and critical interpretation and discussion. FINDINGS: One 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. CONCLUSION: There 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.