Problematic aspects of faecal incontinence according to the experience of adults with spina bifida.
OBJECTIVE
To describe problematic aspects of faecal incontinence according to the experience of adults with spina bifida.


METHODS
Qualitative interview study.


METHODS
Eleven adults with spina bifida and bowel problems.


METHODS
Semi-structured open-ended interviews and qualitative analysis.


RESULTS
Problematic aspects were related to participation in terms of time consumption, communication, social isolation, love and sexuality, and accessibility. Also, to a sense of helplessness in terms of panic and worry, to a sense of shame in terms of impurity, social acceptance and self-image, and to bowel function in terms of decisions about colostomy, voluntary constipation, and changing patterns.


CONCLUSIONS
The results reveal aspects relevant to supporting clinical practice and suggesting issues for questionnaire studies.
Johnsen
Vigdis
V
TRS National Resource Center for Rare Disorders, Sunnaas Rehabilitation Hospital, Nesoddtangen, Norway.
Skattebu
Eli
E
Aamot-Andersen
Astri
A
Thyberg
Mikael
M
D000328:Adult; D003125:Colostomy; D003672:Defecation / Q000502:physiology; D005242:Fecal Incontinence / Q000209:etiology* / Q000523:psychology / Q000534:rehabilitation; D006801:Humans; D007398:Interpersonal Relations; D012649:Self Concept; D012934:Social Isolation; D016135:Spinal Dysraphism / Q000150:complications* / Q000523:psychology / Q000534:rehabilitation; D011795:Surveys and Questionnaires