Care needs of adults on peritoneal dialysis and their informal caregiver: a qualitative study.

Abstract

Introduction Peritoneal dialysis (PD) provides a sense of control, independence, freedom, and self-efficacy. However, it can also impact a patient's physical, psychological, and social well-being, affecting both patients and family members. This study aims to investigate the experiences and needs of adults on PD and their informal caregivers to understand how a person-centred approach can improve the response to their needs. Methods This is a generic descriptive qualitative research study. Data were collected through semi-structured interviews, transcribed, and analysed using Braun and Clarke's thematic analysis and NVivo® software. The data of patients and caregivers was triangulated to better understand their needs. Results Twelve patients and four informal caregivers were interviewed. We identified five macro themes: 'Living with kidney disease and peritoneal dialysis and its needs', 'Preparation before initiating PD and its needs', 'Learning about PD and its needs', 'Impact of dialysis on the need of the patients and caregivers' and 'Experiences with the care team.' The pre-dialysis period is crucial, with specific needs for information, education, shared decision-making, and support during the various psychological, physical, and organisational changes in treatment and the disease trajectory. Caregivers' roles are essential and should always be included in the care path. Conclusion This study emphasizes the importance of continuity in care for patients with their care team and how delicate and important the pre-dialysis phase is for informed and shared decision-making regarding kidney replacement treatment. This understanding can help ensure a more person-centred care approach.