Examining the Transition from Child to Adult Care in Chronic Kidney Disease: An Open Exploratory Approach

David B Nicholas; Miriam Kaufman; Maury Pinsk; Susan Samuel; Lorraine Hamiwka; Anita E Molzahn

Examining the Transition from Child to Adult Care in Chronic Kidney Disease: An Open Exploratory Approach

Nephrol Nurs J. 2018 Nov-Dec;45(6):553-559.

Authors

David B Nicholas¹, Miriam Kaufman², Maury Pinsk³, Susan Samuel³, Lorraine Hamiwka⁴, Anita E Molzahn⁵

Affiliations

¹ Professor, Faculty of Social Work, University of Calgary (Central and Northern Alberta Region), Edmonton, Canada.
² former Staff Physician and Division Head, Division of Adolescent Medicine, Department of Pediatrics, The Hospital for Sick Children and University of Toronto, Toronto, Canada.
³ Professor, Pediatrics and Child Health (Nephrology), and Director of Northern and Rural Pediatric Education, Winnipeg Children's Hospital, University of Manitoba, Winnipeg, Canada.
⁴ Associate Professor, Department of Pediatrics, University of Calgary, and a Pediatric Nephrologist, Alberta Children's Hospital, Calgary, Canada.
⁵ Professor, Faculty of Nursing, University of Alberta, Edmonton, Canada.

PMID: 30585710

Abstract

For youth with chronic kidney disease (CKD) and their families, shifting from pediatric to adult systems of renal care can be challenging. This study explored the transitional process experienced by youth with CKD and their families, including perceived facilitators and barriers to effective transition. Qualitative interviews were conducted with youth with CKD (n=28) and their parents (n=28). Ambiguity regarding healthcare provider roles within the adult system was frequently reported. Themes reflected parental challenge relinquishing care responsibility, synergistic and divergent expectations between youth and parents, tensions in youth self-care readiness, desired healthcare provider roles in transition preparedness, and system considerations in transition. A "learning stage" was recommended in which youth experienced the adult system while supported by known pediatric team members.

Keywords: adolescent; chronic disease; nephrology; transition.

MeSH terms

Adolescent
Adult
Child
Chronic Disease
Delivery of Health Care
Health Personnel
Humans
Parents*
Qualitative Research
Renal Insufficiency, Chronic*
Self Care
Transitional Care*