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

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Author:

Rich, Michael; Patashnick, Jennifer L.; Kastelic, Emily

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Year:

2005

Article Title:

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

Journal:

Journal of Adolescent Health

Volume:

Edition:

Issue:

Pages:

129

ISBN/ISSN:

1054-139X

Source of Funding:

Deborah Munroe Noonan Memorial Fund; Project 5-T71MC-00009-13, MCHB; 5 K23 HD001296, National Institute of Child Health and Human Development, National Institutes of Health

Study Design:

Qualitative Study

Publication Type:

Abstract

Age Group:

Adolescence (13-17 yrs)

URL:

Abstract:

Objective: To examine the role of parental involvement on the independence of adolescents with spina bifida.

Design: Qualitative analysis using Video Intervention/Prevention Assessment (VIA), using narrative themes to analyze independence and parental involvement in participants' lives. Participants created visual illness narratives (median length = 9 hrs) over 8-12 wks using hand-held camcorders, recording daily life activities, medically related activities, interviews with family and friends, and personal monologues. Completed narratives were transcribed and analyzed using NVivo qualitative analysis software.

Subjects and Setting: 6 male and 4 female adolescents with spina bifida, ages 12-19. 2 black, 6 white, and 2 Hispanic participants.

Intervention(s): N/A

Outcome Measure(s): Evidence of independence, both social and physical, among participants.

Results: Participants whose parents were involved in their daily lives and health management were more likely than others to have a handicap-accessible home, engage in physical activities, and demonstrate the capacity for health self-management. These participants also demonstrated more psychological enmeshment with their parents.

Conclusion: Adolescents with spina bifida demonstrated greater levels of independence when their parents were actively involved in their daily lives, but were at a higher risk of psychological enmeshment with their parents.

Keywords:

Adolescent Attitudes
Adolescents
Chronic Illness
Families and Family Life
Health
Interpersonal Communication
Media Production
Parent Child Relations
Parents and Parenting
Patients
Pediatrics
Video Cameras
Videotapes