The effectiveness of bowel and bladder interventions in children with spina bifida.

AIM: Using the World Health Organization International Classification of Functioning, Disability and Health (ICF), the aim of this study was to identify effective strategies for managing urinary and bowel complications resulting from spina bifida. METHOD: Charts of 210 children between 4- and 13-years-old with spina bifida were reviewed to quantify medical interventions and continence status. Standardized quality of life (QOL) questionnaires were administered to a subset of participants; child and parent interviews were carried out to examine the experience of living with bowel and bladder incontinence. Practitioners were also interviewed to understand their perspectives of intervention effectiveness. RESULTS: Chart review indicated less than half of children were continent for bowel and bladder. More variability existed in bowel continence programs, and practitioners considered bowel continence more difficult to achieve than bladder continence. No significant associations were found between continence status and QOL measures. Interviews, however, reflected how managing continence at home and school more broadly affects QOL. Among practitioners, some focused primarily on optimizing physical health while others focused on activity and participation. INTERPRETATION: While continence is a goal, programs used to achieve this are individualized and outcomes may be affected by differential treatment effects, environmental factors, and/or stigma experienced by children.

Is continence status associated with quality of life in young children with spina bifida?

PURPOSE: To evaluate the relationship between child- and parent-reported quality of life (QOL) and bowel and bladder continence among young children with spina bifida (SB). METHODS: 104 children ages 5-12 years and one of their parents/guardians completed the Pediatric Quality of Life Inventory - Generic Form (PedsQL; parent and child) and the Quality of Life in Spina Bifida Questionnaire (QOLSBQ, parent only). Data on continence, child age, and condition-specific variables were obtained by chart review. RESULTS: Parent and child QOL scores (on all measures of QOL) were positively correlated; parents rated child QOL lower than children's self report. QOL scores did not differ based on continence status. Total PedsQL scores were associated with age and mobility based on child report and with mobility based on parent report. CONCLUSIONS: QOL may not be affected by continence status among young children with SB, though demographic (i.e., age) and condition-specific (i.e., functional mobility status) variables appear relevant. Additional research is needed to further evaluate condition-specific variables, other protective variables, and possible measurement issues that influence QOL in young children with SB.

Urinary continence across the life course.

Spina bifida is the most common defect of the central nervous system. It is a congenital malformation of the spine with abnormal neural tube closure occurring between the third and fourth weeks of gestation, and most frequently affecting the lumbar and sacral regions. Most children with spina bifida have a normal urinary tract at birth, although renal damage and renal failure are among the most severe complications of spina bifida. Before ventricular shunting, survival rates for children with spina bifida were low, but most patients can now be expected to live into adulthood, thus prevention of urologic complications and promotion of continence have become critical. This article reviews the literature regarding urinary continence, and discusses issues across the lifespan, and implications for clinical practice and the pediatrician's role in the urologic care of children with spina bifida.

Cultural considerations in the care of children with spina bifida.

Spina bifida occurs when the neural tube fails to close during early fetal development, resulting in a range of neural tube defects (NTDs). The cause of spina bifida is not fully understood, but scientists believe that NTDs are the result of genetic and environmental factors acting simultaneously. The Centers for Disease Control reports that spina bifida and other NTDs occur more frequently in some ethnic groups, such as Hispanic people, than in others. The United States is increasingly multicultural and diverse, and it is becoming more difficult to categorize individuals into a single racial/ethnic group. This article uses the term ethnicity as defined by the Institute of Medicine and avoids using race unless part of a particular study.

The problem with prevention: the case of spina bifida.

In this paper, I present a viewpoint about prevention and spina bifida that is not usually expressed within the occupational therapy literature. Using an autoethnographic account, I convey my experiences as a person with impairments from spina bifida in order to problematize current preventive efforts undertaken to eradicate this birth defect. This self-reflexive account connects my personal experiences to historical and medical views about spina bifida. The messages inherent in preventive efforts are discussed from a disability rights perspective. Occupational therapists are challenged to examine their attitudes toward disability, act as advocates in their practice, and, in a more informed manner, support or contest policy initiatives.

Encounters in a world of pain: an autoethnography.

Pain, a major health problem in the United States, is a highly complex and subjective experience that is poorly understood by many medical, psychological, and rehabilitation practitioners. In this paper I use a qualitative research methodology, autoethnography, to present a personal narrative about my experience of chronic pain. In this research I am both the research participant and the researcher. I begin with my personal narrative. I then problematize conceptions about chronic pain and discuss them from the point of view of my own narrative and from stories and ethnographies in the literature. Finally I reflect on how occupational therapists can more effectively work with persons with chronic pain.