What young people with spina bifida want to know about sex and are not being told.
OBJECTIVE
The aim of this paper was to examine sexual knowledge, concerns and needs of youth with spina bifida (SB) to inform the medical community on ways to better support their sexual health.


METHODS
As part of the Video Intervention/Prevention Assessment (VIA) - transitions, a prospective cohort study, 309 h of video data were collected from 14 participants (13-28 years old) with SB. Participants were loaned a video camcorder for 8-12 weeks to shoot visual narratives about any aspects of their lives. V/A visual narratives were analysed with grounded theory using NVivo.


RESULTS
Out of 14 participants, 11 (six women) addressed issues surrounding romantic relationships and sexuality in their video clips. Analysis revealed shared concerns, questions and challenges regarding sexuality gathered under four main themes: romantic relationships, sexuality, fertility and parenthood, and need for more talk on sexuality.


CONCLUSIONS
Youth with SB reported difficulties in finding answers to questions regarding their sexuality, romantic relationships and fertility. This study revealed a need for help from the medical community to inform and empower youth with SB in the area of sexual health. Through sexual and reproductive health education with patients and parents starting at an early age, medical providers can further encourage healthy emotional and physical development in adolescents transitioning into adulthood.
Center on Media and Child Health, Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Harvard Medical School, Harvard School of Public Health, Boston, MA, USA.
C
C
Akre
Department of Obstetrics and Gynecology, Washington Hospital Center, Washington, DC, USA.
A
A
Light
Wheelock College, Boston, MA, USA.
L
L
Sherman
Center on Media and Child Health, Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Harvard Medical School, Harvard School of Public Health, Boston, MA, USA.
J
J
Polvinen
Center on Media and Child Health, Division of Adolescent/Young Adult Medicine, Boston Children's Hospital, Harvard Medical School, Harvard School of Public Health, Boston, MA, USA.
M
M
Rich
D000293:Adolescent; D000328:Adult; D005260:Female; D006801:Humans; D008297:Male; D011446:Prospective Studies; D019529:Sexuality; D016135:Spinal Dysraphism / Q000503:physiopathology* / Q000523:psychology*; D014741:Video Recording
adolescent; chronic condition; qualitative; sexual health; spina bifida