Experiences of Surgical Continence Management Approaches for Cloacal Anomalies: A Qualitative Analysis Based on 6 Women

• Published in: Journal of pediatric & adolescent gynecology 2014-10, Vol.27 (5), p.266-270
• Main Authors: Liao, L.-M., PhD, FBPsS, Baker, E., ClinPsyD, MBPsS, Boyle, M.E., PhD, FBPsS, Woodhouse, C.R.J., FRCS, Creighton, S.M., MD, FRCOG
• Format: Article
• Language: English
• Subjects: ACE; Adaptation, Psychological; Adolescent; Clinical psychology; Cloaca - abnormalities; Cloacal anomalies; Communication; Fecal Incontinence - etiology; Fecal Incontinence - psychology; Fecal Incontinence - surgery; Female; Health Communication; Humans; Mitrofanoff; Obstetrics and Gynecology; Patient Participation; Patient Satisfaction; Pediatrics; Qualitative Research; Treatment Outcome; Treatment preferences; Urinary Incontinence - etiology; Urinary Incontinence - psychology; Urinary Incontinence - surgery; Urogenital Abnormalities - complications; Urogenital Abnormalities - psychology; Urogenital Abnormalities - surgery; User experiences; Young Adult
• ISSN: 1083-3188; 1873-4332
• DOI: 10.1016/j.jpag.2013.11.011

Abstract Study Objective The aim of this qualitative study was to gain insight into health care experiences of young women diagnosed with cloacal anomalies, with a special focus on continence management. Design Qualitative analysis of one-to-one interviews. Setting A tertiary center for congenital anomalies of the urogenital tract in London. Participants Six women aged 16 to 24 with cloacal anomalies. Interventions Tape-recorded one-to-one semi-stuctured interviews with a skilled interviewer. Main Outcome Measure(s) The taped interviews were transcribed and analyzed verbatim using interpretative phenomenological analysis according to the research question. Organizing themes across all of the accounts were identified. Results Two organizing themes concerning our research interests are summarized. The first theme Personal Agency in the Hands of Experts focuses on the interviewees’ appreciation of their life-saving surgical care and their involvement in treatment decisions. The second theme Compromises and Trade-Offs focuses on what it was like to live with the more traditional versus the more advanced continence methods. Reliability emerged as a key priority in terms of continence treatment outcome. Gratitude may have interfered with the women’s honest communications during treatment decision and evaluation consultations. Conclusions A more developed approach to communication about the complex interventions proposed, founded on a nuanced understanding of users perspectives, can enhance informed decision making about continence management approaches. Despite these specific gaps, the interviewees were appreciative of their care and optimistic about life.