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.
Swallow
Veronica
V
School of Nursing, Midwifery and Social Work, University of Manchester, Manchester, England, United Kingdom. veronica.swallow@manchester.ac.uk
Lambert
Heather
H
Clarke
Charlotte
C
Campbell
Steve
S
Jacoby
Ann
A
D000293:Adolescent; D002648:Child; D002675:Child, Preschool; D002908:Chronic Disease; D019468:Disease Management; D004739:England; D022143:Family Nursing; D005260:Female; D006701:Home Nursing; D006801:Humans; D007223:Infant; D007674:Kidney Diseases / Q000451:nursing / Q000628:therapy*; D008137:Longitudinal Studies; D008297:Male; D010353:Patient Education as Topic; D011368:Professional-Family Relations; D013663:Teaching / Q000379:methods