Achieving independence: The role of parental involvement with adolescents with spina bifida

Purpose: The purpose of this study was to determine effects of parental involvement on development of independence among adolescents with spina bifida. Methods: Adolescents with spina bifida used Video Intervention/ Prevention Assessment (VIA) to document their daily lives. Participants videotaped their activities for 8-12 weeks: classes, sports, clinical visits, hospitalizations, medical self-management, home tours, interviews of family/friends, and personal monologues about their experiences. Visual narratives were logged, then coded using QSR NVivo 2.0 qualitative analysis software. Themes related to independence and parental involvement were established using grounded theory. Results: Ten participants (ages 12-19; 6 M, 4 F; 2 black, 6 white, 2 Hispanic) produced 122 hours of visual narratives (median 9 hours, range 1-38 hours). Participants engaged in many group and individual physical activities, including wheelchair basketball, waterand snow-skiing, swimming, and wrestling. Health self-management included catheterization, showering, dressing, and transfers from bed to chair. Parents of 5/10 participants appeared on camera assisting participants in health care tasks (putting on leg braces, adjustment of walkers and wheelchairs, catheterizations, attendance at clinical visits), mealtimes, dealing with school issues (transportation, accessibility, homework), and extra-curricular activities (sports, music, theater), as well as helping the participant create his/her visual narrative. Participants with involved parents were more likely to show that they had a handicap-accessible home (4/5 vs. 2/5), participate in physical activities (4/5 vs. 1/5), and be capable of some health self-management (5/5 with involved parents were able to complete some tasks, 2/5 participants who did not show involved parents were unable to self-manage, the issue was not discussed by the remaining 3). All participants with involved parents revealed varying degrees of parent-child enmeshment, whereas participants who did not document parental involvement showed no enmeshment. Members of several enmeshed parent-participant dyads referred to themselves as one person. One mother, explaining her daughter’s incontinence, stated, “We can’t move or we pee.” However, one participant said about his parents, “It’s my life. I have to deal with these things; they don’t. I can deal with them. They don’t need to be as involved as sometimes they feel that they do.” Conclusions: VIA visual narratives showed that participants with involved parents were likely to be more independent, both physically and socially. However, these participants were more likely to demonstrate psychological enmeshment, which could conflict with the development of independence. Effective transitions to adulthood may be facilitated by better understanding of the parentpatient relationship and the development of management strategies that promote normal maturation of the adolescent while supporting his/her health care needs. Support: Deborah Munroe Noonan Memorial Fund; Project 5-T71MC-00009-13, MCHB; 5 K23 HD001296, National Institute of Child Health and Human Development, NIH. PII: S1054-139X(04)00339-8