Advertisement

Self-cathing experience journal: Enhancing the patient and family experience in clean intermittent catheterization

      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.
      Based on 1–7 Likert scale (1 = not at all, 4 = moderate, 7 = extremely).
      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

      To read this article in full you will need to make a payment

      Purchase one-time access:

      Academic & Personal: 24 hour online accessCorporate R&D Professionals: 24 hour online access
      One-time access price info
      • For academic or personal research use, select 'Academic and Personal'
      • For corporate R&D use, select 'Corporate R&D Professionals'

      Subscribe:

      Subscribe to Journal of Pediatric Urology
      Already a print subscriber? Claim online access
      Already an online subscriber? Sign in
      Institutional Access: Sign in to ScienceDirect

      References

        • Lapides J.
        • Diokno A.C.
        • Silber S.J.
        • Lowe B.S.
        Clean intermittent self-catheterization in the treatment of urinary tract disease.
        J Urol. 1972; 107: 458-461
        • Le Breton F.
        • Guinet A.
        • Verollet D.
        • Jousse M.
        • Amarenco G.
        Therapeutic education and intermittent self-catheterization: recommendations for an educational program and a literature review.
        Ann Phys Rehab Med. 2012; 55: 201-212
        • Pohl H.G.
        • Bauer S.B.
        • Borer J.G.
        • Diamond D.A.
        • Kelly M.D.
        • Grant R.
        • et al.
        The outcome of voiding dysfunction managed with clean intermittent catheterization in neurologically and anatomically normal children.
        BJU Int. 2002; 89: 923-927
        • Neel K.F.
        Feasibility and outcome of clean intermittent catheterization for children with sensate urethra.
        Can Urol Assoc J. 2010; 4: 403-405
        • Alpert S.A.
        • Cheng E.Y.
        • Zebold K.F.
        • Kaplan W.E.
        Clean intermittent catheterization in genitally sensate children: patient experience and health related quality of life.
        J Urol. 2005; 174: 1616-1619
        • Borzyskowski M.
        • Cox A.
        • Edwards M.
        • Owen A.
        Neuropathic bladder and intermittent catheterization: social and psychological impact on families.
        Dev Med Child Neurol. 2004; 46: 160-167
        • Beardslee W.R.
        • Gladstone T.R.
        • Wright E.J.
        • Cooper A.B.
        A family-based approach to the prevention of depressive symptoms in children at risk: evidence of parental and child change.
        Pediatrics. 2003; 112: e119-e131
        • DeMaso D.R.
        • Gonzalez-Heydrich J.
        • Erickson J.D.
        • Grimes V.P.
        • Strohecker C.
        The experience journal: a computer-based intervention for families facing congenital heart disease.
        J Am Acad Child Adolesc Psychiatry. 2000; 39: 727-734
        • DeMaso D.R.
        • Marcus N.E.
        • Kinnamon C.
        • Gonzalez-Heydrich J.
        Depression experience journal: a computer-based intervention for families facing childhood depression.
        J Am Acad Child Adolesc Psychiatry. 2006; 45: 158-165
        • Rolland J.S.
        • Walsh F.
        Facilitating family resilience with childhood illness and disability.
        Curr Opin Pediatr. 2006; 18: 527-538