Facilitators and Barriers to Transitioning to Self-Catheterization: A Patient and Parent Perspective
Lillian C. Hayes, PhD, Rachel A. Saunders, BA, Saafia N. Masoom, BA, Diane E. Price, MSW, LICSW, Kennary Choung, RN, BSN, Mélise A. Keays, MD, MSc FRCSC, Stuart B. Bauer, MD.
Boston Children's Hospital - Department of Urology, Boston, MA, USA.
BACKGROUND: Clean intermittent catheterization (CIC) is a well-accepted intervention for the management of bladder dysfunction; it aids in preserving kidney function & achieving continence. When CIC is initiated in early life, caregivers typically take on the primary role of catheterizing their child. As the child matures, the responsibility of learning and performing CIC can be gradually transitioned from caregiver to child. While several studies have outlined transition of care models with other chronic conditions, there is limited research about patients assuming self-CIC. The objective of this study was to explore families' lived experiences during the transition to determine what optimized or hindered the process.
METHODS: A phenomenological approach using semi-structured interviews was conducted with patients & families between August 2018 & October 2019. Interview questions were validated for acceptability with a pilot sample. Purposive sampling identified eligible patients with bladder dysfunction on CIC. Interviews were grouped by patient age: caregivers of children less than 12 years (Group 1), patients 12 - 18 years & their caregivers, interviewed separately (Group 2), & patients greater than 18 years (Group 3). Reasons for CIC (neurogenic, anatomic, functional voiding disorders) were recorded for all. Interview questions focused on transition of CIC responsibilities, specifically the caregiver and patient experience of what facilitated and/or hindered this process. Two coders reviewed transcripts independently with explicit coding and met to resolve differences between them. Emerging themes were identified to ascertain convergence, divergence, or variation in response. This allowed creation of a code book used for closed coding. Dedoose (a web-based qualitative coding program) was used to create code reports & allow for thematic analysis.
RESULTS: 52 interviews were conducted: Group 1 (14 families, 14 interviews), Group 2 (10 families, 20 interviews), & Group 3 (16 families, 18 interviews including 2 parents interviewed separately). From these interviews, we identified several themes relating to child and adolescent readiness to initiate and to successfully facilitate performing self-CIC: (1) child/teen desire for increasing independence and/or reducing involvement of support persons (e.g. school nurses); (2) supportive caregivers, encouraging their child's independence and adopting a collaborative approach; and (3) child/teen confidence in ability to learn, and physically and emotionally perform CIC. Barriers to transition occurred when (1) caregivers are reluctant to transfer control, often related to limited confidence in their child's abilities; (2) there are neurological limitations (e.g., lack of manual dexterity, level of cognitive development); and (3) the child being reluctant to learn CIC, preferring instead to remain dependent on their caregivers.
CONCLUSIONS: Healthcare providers should introduce an eventual plan for transition early in the course of the child's condition and support the family in developing realistic goals that are tailored to their developmental readiness. During transition, the healthcare team should provide developmentally appropriate training to the child, along with structured follow-up, and encouragement throughout the process. When introducing CIC to older children, it would be beneficial to teach patients and their caregivers simultaneously.
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