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1. What young people with spina bifida want to know about sex and are not being told.

Author

Akre, C., Light, A., Sherman, L., Polvinen, J., and Rich, M.

Subjects
*FERTILITY, *GROUNDED theory, *SEXUAL health, *INTERPERSONAL relations, *LONGITUDINAL method, *PARENTHOOD, *RESEARCH funding, *HUMAN sexuality, *SPINA bifida, *VIDEO recording, *REPRODUCTIVE health, *QUALITATIVE research, *NARRATIVES, *THEMATIC analysis, *HEALTH literacy, *DATA analysis software
Abstract

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. [ABSTRACT FROM AUTHOR]

Published
2015
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2. The Everyday Lives of Children with Cancer in Argentina: Going beyond the Disease and Treatment.

Author

Vindrola‐Padros, Cecilia

Subjects
*EMIGRATION & immigration & psychology, *PATIENT education, *TUMORS in children, *HOUSING, *POVERTY areas, *PSYCHOLOGICAL adaptation, *ANXIETY, *DECISION making, *DIAGNOSIS, *DIAGNOSTIC errors, *DRAWING, *EXPERIENCE, *FAMILIES, *GUILT (Psychology), *INTERVIEWING, *LIFE change events, *MEDICAL errors, *PATIENTS, *PHYSICIAN-patient relations, *PUBLIC hospitals, *RESEARCH funding, *STATISTICAL sampling, *PSYCHOLOGICAL stress, *PATIENTS' rights, *QUALITATIVE research, *NARRATIVES, *THEMATIC analysis, *REFUSAL to treat, *DATA analysis software, *PSYCHOLOGY
Abstract

Most of the literature on paediatric oncology treatment has provided descriptions of children's everyday lives that are circumscribed to periods of hospitalisation. In this paper, I argue that the political and economic context where children receive oncology treatment as well as the particular trajectories of their families influence their experiences. The narratives from children receiving treatment in three public hospitals in Buenos Aires, Argentina, were collected. Their stories indicate that issues such as the interruption of school, the separation of family members, the expenses incurred during treatment, and barriers to care influence the everyday lives of children and should be included in paediatric oncology research. © 2011 The Author(s). Children & Society © 2011 National Children's Bureau and Blackwell Publishing Limited [ABSTRACT FROM AUTHOR]

Published
2012
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