Childhood chronic-kidney-disease: A longitudinal-qualitative study of families learning to share management early in the trajectory

Objective: To explore the ways families learn to share management during the early stages of childhood chronic-kidney-disease. Methods: This longitudinal, descriptive study based on the tenets of grounded theory, aimed to derive meaning about family–professional interactions during shared management. Data were obtained from six newly referred families, four renal nurses, four paediatric nephrologists and one dietician through: 36 semi-structured interviews, 21 case-note reviews and four child/parent learning diaries. Results: Three learning stages were identified: dependent (families' understanding was superficial, they lacked underlying knowledge and were totally reliant on professional guidance); co-dependent (families engaged competently in management but still required extensive guidance); independent (families communicated effectively with staff and competently adjusted management within professionally defined parameters). Five families actively shared management from early in the trajectory and progressed to independent learning when, by mutual agreement, professional input to management gradually decreased. The remaining family adopted a passive approach to management, did not progress to independent learning and remained reliant on professional input. Conclusions: Families in this study demonstrated three learning stages in becoming competent at management. Future research is needed to investigate the ways professionals promote family competence early in the trajectory and the factors that can facilitate or hinder families’ progression to independent learning.