Spina bifida and mobility in the transition years

Objective: Adolescents with spina bifida experience decreased mobility (Johnson KL, Dudgeon B, Kuehn C, et al: Am J Public Health 2007;97:330-6), especially during the time of transition from pediatric to adult care, but little research has been done on the relationships between mobility and self-management skills, psychological health, or quality of life. Design: In this multicenter, interdisciplinary study, a convenience sample of 61 participants with spina bifida from regional spina bifida clinics (mean age = 21.0 ± 2.1 yrs) participated in a structured clinical interview on self-management and completed standardized self-report measures of psychological distress, quality of life, and mobility status. Participants were divided into three mobility groups: ambulators, part-time wheelchair users, and full-time wheelchair users and were compared with respect to outcome measures. Results: We found that full-time wheelchair use is associated with reduced quality of life but that psychological distress and problems with self-management are prevalent, regardless of mobility status. Conclusion: Research should be aimed at assessing life satisfaction as it relates to assistive technology use to delineate further how technological advancements in wheelchair Design and universal Design of homes and communities can have the greatest impact on mobility and quality of life. Copyright © 2009 by Lippincott Williams & Wilkins

Resilience, self-esteem and self-compassion in adults with spina bifida

Study design: Cross-sectional survey. Objectives: To examine factors that may enhance and promote resilience in adults with spina bifida. Setting: Community-based disability organisations within Australia. Methods: Ninety-seven adults with a diagnosis of spina bifida (SB) completed a survey comprising of demographic questions in addition to standardised self-report measures of physical functioning (Craig Handicap Assessment and Reporting Technique), resilience (Connor-Davidson Resilience Scale, 10 item), self-esteem (Rosenberg Self-esteem Scale), self-compassion (Self-compassion Scale) and psychological distress (Depression Anxiety Stress Scales, 21 item). Results: The majority (66%) of respondents reported moderate to high resilience. Physical disability impacted on coping, with greater CD-RISC 10 scores reported by individuals who were functionally independent in addition to those who experienced less medical co-morbidities. Significant correlations between resilience and psychological traits (self-esteem r = 0.36, P<0.01; self-compassion r =0.40, P<0.01) were also noted. However, the combined contribution of these variables only accounted for 23% of the total variance in resilience scores (R2 = 0.227, F(5,94)= 5.23, P<0.01). Conclusion: These findings extend current understanding of the concept of resilience in adults with a congenital physical disability.The suggestion is that resilience involves a complex interplay between physical determinants of health and psychological characteristics, such as self-esteem and self-compassion. It follows that cognitive behavioural strategies with a focus on self-management may, in part, contribute to the process of resilience in this group. Further large-scale and longitudinal research will help to confirm these findings.MR Hayter and DS Dorsty