Summary
Objective
This pilot study evaluated the safety, feasibility, and usefulness of the Self-Cathing
Experience Journal (SC-EJ), an online resource for patients and families to address
issues and stigma surrounding clean intermittent catheterization (CIC). Modeled after
previous assessments of the Cardiac and Depression Experience Journals (EJs), this
project uniquely included patients and caregivers. We explored whether patients and
caregivers would find the SC-EJ helpful in increasing their understanding of CIC,
accepting the medical benefits of self-catheterization, improving hopefulness, and
diminishing social isolation.
Methods
Patients seen in a tertiary urology clinic were asked to view the SC-EJ for 30 min
and rate its safety and efficacy. The cross-sectional sample included 25 families:
17 surveys were completed by the patient and their caregiver, five by the patient
only, and three by the caregiver only. Mean patient age was 15.7 ± 5.8 years (range
7–29 years). The patients were 64% female, and 72% used CIC due to neurological diagnoses.
Results
Mean overall patient satisfaction with the SC-EJ was moderately high (mean = 5, out
of a 7-point Likert scale from 1 = not at all to 7 = extremely). Mean overall caregiver
satisfaction was high (mean = 5.55) and was similar to caregiver satisfaction scores
recorded in caregivers with children with congenital heart disease and depression
(mean = 5.7 and mean = 5.75, respectively). No significant differences were noted
in satisfaction between CIC patients and CIC caregivers or among caregivers of the
three populations surveyed (CIC, Cardiac, and Depression). CIC patients and caregivers
reported that SC-EJ viewing gave them a strong sense that others are facing similar
issues (patient mean = 6.15, caregiver mean = 6.21) and that it was helpful to read
about other families' CIC experiences (patient mean = 6, caregiver mean = 5.89).
Discussion
TableMean ratings and SDs for satisfaction and safety of the Self-Cathing Experience Journal
by patients and caregivers and comparison of caregiver ratings from the cardiac and
depression experience journals.
| Patients using CIC (n = 22) | Caregivers of patients using CIC (n = 20) | Mothers of patients with cardiac disease (n = 40) | Caregivers of patients with depression (n = 35) | Comparison of CIC patients and caregivers (p) | Comparison of caregivers (CIC, cardiac, depression) (p) | |
|---|---|---|---|---|---|---|
| Overall, how satisfied are you with the Self-Cathing Experience Journal? | 5 ± 1.17 | 5.55 ± 1.15 | 5.7 ± 1.8 | 5.75 ± 1.66 | 0.1329 | 0.9070 |
| Did you feel that the Self-Cathing Experience Journal was hurtful? | 1.15 ± 0.37 | 1.35 ± 1.35 | 1.2 ± 0.7 | 1.43 ± 1.14 | 0.5076 | 0.6219 |
| Did the Self-Cathing Experience Journal give you any sense that there are others facing similar issues? | 6.15 ± 1.18 | 6.21 ± 1.08 | 6.7 ± 0.7 | 6.44 ± 0.91 | 0.8648 | 0.1103 |
| Did you find it helpful to read about and see other families' experiences? | 6 ± 1.20 | 5.89 ± 1.24 | 5.7 ± 1.5 | 6.06 ± 1.39 | 0.7718 | 0.5449 |
| Did the Self-Cathing Experience Journal increase your sense of hope? | 4.95 ± 1.70 | 5.11 ± 1.76 | 5.1 ± 1.9 | 5.44 ± 1.42 | 0.7661 | 0.6518 |
CIC = clean intermittent catheterization, used in self-catheterization.
a Based on 1–7 Likert scale (1 = not at all, 4 = moderate, 7 = extremely).
Keywords
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Article info
Publication history
Published online: April 21, 2015
Accepted:
March 17,
2015
Received:
December 29,
2014
Identification
Copyright
© 2015 Journal of Pediatric Urology Company. Published by Elsevier Inc. All rights reserved.
