Sexuality and Relationships in Young People With Spina Bifida and Their Partners

Heller, Mariel Kupfert; Gambino, Sara; Church, Paige; Lindsay, Sally; Kaufman, Miriam; McPherson, Amy C.

doi:10.1016/j.jadohealth.2016.03.037

Cited by 41 publications

(24 citation statements)

References 21 publications

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“…As they gained experience in telling, they had a clearer idea of what they wanted to say and the extent of disclosure. As seen elsewhere, perceived risks were somewhat higher when disclosing to an actual/potential romantic friend or if the relationship was or likely to be intimate [52], but in these cases, it was pragmatically often impossible not to disclose [26]; the salience of the condition is raised in such situations [53]. Typically, the young people tended towards partial rather than full disclosure [25], revealing generic, less embarrassing aspects that were likely to elicit the least dramatic responses and which were less awkward to share.…”

Section: Discussionsupporting

confidence: 55%

See 1 more Smart Citation

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

Carter

Rouncefield‐Swales

Bray

et al. 2020

International Journal of Chronic Diseases

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Inflammatory Bowel Disease (IBD) describes a group of conditions that includes Crohn’s disease and ulcerative colitis. Unlike some chronic conditions, to a greater or lesser extent, IBD is hidden from or invisible to others which enables concealment of the condition, especially when stigma is associated with the condition. Concealment or nondisclosure allows a means of identity management. Disclosure of a chronic condition is not a single event, and it is dependent on many factors. There is little literature that specifically addresses stigma and/or disclosure in relation to children and young people with IBD. An in-depth qualitative study was undertaken, framed by Interpretive Description and using interviews, friendship maps, and photographs within a participatory framework. Public and patient involvement and engagement (PPIE) was undertaken throughout (inception to dissemination) the study. Young people aged 14-25 years with IBD who had participated in the survey phase of the larger study self-selected to participate in interviews that focused broadly on friendship and feelings of social connectedness. Data were analysed using an iterative, interpretive approach. Preliminary themes were developed and these were explored further, and then tentative theoretical connections about friendship were developed. One superordinate theme focused on disclosure. Thirty-one young people (16 males, 15 females, mean age 18.7 years; 24 Crohn’s, 7 colitis) participated in the interviews (of these, five created friendship maps and six utilised photographs). Three discrete, but interlinked, themes were generated, revealing young people’s experiences of disclosure: to tell or not to tell; controlling the flow: the who, when, what, and how of telling; and reactions and responses to telling: anticipated and actual. Decisions about telling friends about having IBD are challenging for many young people. Having control over disclosure is not always possible, and the potential consequences can feel risky. However, most young people had positive experiences of disclosure and gained support from friends and romantic partners. Most young people downplayed the seriousness of their IBD, revealing some facets of their condition, aiming to sustain their self-identity. Only one young person had been given professional support to disclose. Provision of support and opportunities to discuss whether, when, who, and how to tell friends and what the risks and benefits may be is something that could be woven into an ongoing and wider person-centred dialogue between young people and health professionals within routine clinic visits.

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Section: Discussionsupporting

confidence: 55%

“…Despite the challenges associated with disclosure, most of the young people in the current study managed this without professional advice or support [52]; little literature addresses this key issue. Most were also apparently unaware of the resources that might have been helpful.…”

Section: Discussionmentioning

confidence: 99%

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

Carter

Rouncefield‐Swales

Bray

et al. 2020

International Journal of Chronic Diseases

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“…Of note, although most patients report similar interest in sexual relationships when compared with their peers, 67% report concerns about intimate relationships. 30 These concerns likely stem from both a lack of education specific to sexual function in spina bifida and physical symptoms such as incontinence and erectile dysfunction. A broad range of erectile dysfunction in the spina bifida population have been reported, ranging from 25 to 88%.…”

Section: Adult/transition Considerationsmentioning

confidence: 99%

Transition of Care of the Spina Bifida Patient from Childhood to Adulthood

Tomei

Zhou

2020

Journal of Pediatric Neurology

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Spina bifida is a complex disease process, the care of which involves multiple physicians and other healthcare providers in several disciplines. As our treatment of this disorder has improved over time, thus has survival of these patients into adulthood. Consideration in the care of young adults and adults with spina bifida poses significant challenges that parallel many other disease processes of childhood where medical advances have improved survival. We attempt to discuss the complex disorder that is spina bifida and some of the challenges associated with transition of care of these patients into adulthood.

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“…This is a poorly studied area, but work from Toronto highlighted the lack of education and desire to learn more from their healthcare providers. 17,40 There are a few reports of adults with significant impairments, with one from Boston stating a male erectile dysfunction rate of 59% and female dysfunction at 89%. However, the response rate was 30% and dysfunction varied with the level of the lesion.…”

Section: Adolescencementioning

confidence: 99%

Neuropathic bladders: Investigation and treatment through their lifetime

Metcalfe¹

2017

CUAJ

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The child with a neuropathic bladder requires lifelong dedicated care. Just as each patient presents with unique physiology, each phase of their life presents varying challenges. The primary concern for our patients is their renal health, but continence and independence also play significant roles. Most patients can be managed conservatively, but a myriad of surgical options are also available, reinforcing our emphasis on individualized care. Appropriate presurgical planning is required to ensure the right patient receives the best operation for his/her wants and needs. Furthermore, the numerous potential complications must be understood and longterm followup and surveillance is required.This review outlines the basic pathophysiology, investigations, and treatments, with a focus on the changing needs throughout their lives.

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Sexuality and Relationships in Young People With Spina Bifida and Their Partners

Cited by 41 publications

References 21 publications

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

“I Don’t Like to Make a Big Thing out of It”: A Qualitative Interview-Based Study Exploring Factors Affecting Whether Young People Tell or Do Not Tell Their Friends about Their IBD

Transition of Care of the Spina Bifida Patient from Childhood to Adulthood

Neuropathic bladders: Investigation and treatment through their lifetime

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