Sexual health and education guidelines for the care of people with spina bifida.

Sexual development is not only comprised of the changes to a person's body during puberty; it is a part of social development and should be considered in the context of basic and routine human desires for connectedness and intimacy, beliefs, values and aspirations. As is true for everyone, it is important that individuals with spina bifida have opportunities to acquire developmentally appropriate, relevant and accurate sexual health knowledge. Those with spina bifida need to be able to negotiate sexual desire, intimacy and sexual expression. They also need education about their sexual health and how to limit the negative outcomes of sexual activity related to sexually transmitted infections, unplanned pregnancy or sexual coercion, violence, abuse or exploitation. This article discusses the Spina Bifida Sexual Health and Education Healthcare Guidelines from the 2018 Spina Bifida Association's Fourth Edition of the Guidelines for the Care of People with Spina Bifida using the World Health Organization's framing of sexual health and reviews the literature on sexual health and education for individuals with spina bifida.

Psychosocial outcomes for adults with spina bifida: a scoping review protocol.

OBJECTIVE: The objective of this scoping review is to explore the evidence on psychosocial needs and related outcomes for adults with spina bifida. INTRODUCTION: Individuals with spinal bifida have complex service needs that can lead to the emergence of secondary conditions and health complications, which can result in serious, life-threatening illnesses. While much is known about the biological impact of spina bifida, there is a dearth of information regarding its psychological and social impact. INCLUSION CRITERIA: This scoping review will include adults (18 years and over) with the following diagnoses: spina bifida, neural tube defects, tethered cord, myelodysplasia/myelodysplasias, diastematomyelia/diastematomyelias, meningomyelocele, terminal myelocystocele, fatty thickened filum, split cord malformation, or lipomyelomeningocele. The literature reviewed will explore the range and trend of topics reported from the time data on adults with spinal bifida were first published published to the most current time frame. This review will report on the psychosocial needs identified for adults with spinal bifida, such as access to community-based services and support needed to function independently. There will be no limits to the geographical location or setting (e.g. health care or community-based). METHODS: The following databases will be accessed for this review: Ovid MEDLINE, Embase, Cochrane Library, CINAHL, Web of Science, PsycINFO, and ERIC, with no date restrictions. Gray literature searches will be included. Potentially relevant studies will be assessed independently by two reviewers for inclusion and conflicts discussed with a third reviewer. The review narrative will be accompanied by findings presented in tabular format.