Search results for ‘Subject term:"spina bifida"’ Sort:
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Experiences of participation in a Swedish society among adults with cerebral palsy or spina bifida: involvement and challenges
- Authors:
- TORNBOM Karin, TORNBOM Marie, SUNNERHAGEN Stibrant
- Journal article citation:
- Journal of Social Work in Disability and Rehabilitation, 12(4), 2013, pp.256-271.
- Publisher:
- Taylor and Francis
- Place of publication:
- Philadelphia, USA
Participation in society is vital to mental health and is beneficial to individuals and society. The goal of this study was to provide insight into how people with cerebral palsy and spina bifida view their experiences of participation and to examine factors that might influence this issue. The results show that participants emphasised the importance of being accepted and treated equally. Living independently and being able to play an active and leading role in their lives was also essential. Participation was described as a process of interaction between a person and society, with mutual responsibility in respect to integration. (Publisher abstract)
What young people with spina bifida want to know about sex and are not being told
- Authors:
- AKRE C., et al
- Journal article citation:
- Child: Care, Health and Development, 41(6), 2015, pp.963-969.
- Publisher:
- Wiley
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. (Publisher abstract)