Problematic aspects of faecal incontinence according to the experience of adults with spina bifida

Abstract

Objective: To describe problematic aspects of faecal incontinence according to the experience of adults with spina bifida. Design: Qualitative interview study. Subjects: Eleven adults with spina bifida and bowel problems. Method: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. Conclusion:The results reveal aspects relevant to supporting clinical practice and suggesting issues for questionnaire studies.

Illness Experiences of Adults with Spina Bifida: Protecting the Whole Self

“…In this stage, adults with SB were anxious and resentful and tried to avoid others by hiding and isolating themselves. These findings support other studies that describe the emotional distress of adults with SB [20,44] and social isolation among adults with SB [45]. This indicates that psychosocial intervention focusing on self-identity achieved by raising self-esteem and self-confidence is greatly needed in the early stages of adjustment among adults with SB.…”

Children and youth with myelomeningocele’s independence in managing clean intermittent catheterization in familiar settings

“…However, children with MMC also find independently managing bowel emptying difficult. This is yet another crucial obstacle for independence (13). Bowel irrigation procedures are even more time‐consuming than urinary toilet activities and need more support.…”

“…There are important implications of being dependent in managing toileting tasks for children and adolescents with MMC. The need for specific equipment, designated spaces and additional time can impose a considerable barrier to participation in productive and leisure activities in the community (13). Any subsequent reduction in participation in social and community‐based activities may lead to isolation and reduced health and well‐being (14–16).…”

Experiences among children and adolescents of living with spina bifida and their visions of the future

“…Previous research has investigated several aspects of living with SB, including selfmanagement [12,15], self-concept and family relationships [16], peer relationships [17], experience of disability, self-understanding and identity [18,19], everyday living [20], faecal incontinence [21], social support [22], the process of transition to adult health care and adulthood [23,24] and condition-related knowledge [25]. The main focus of most studies is on how youth and adults with SB view their current situation rather than long-term plans and expectations.…”