Saturday, December 26, 2015

Young Women with a Disorder of Sex Development: Learning to Share Information with Health Professionals, Friends & Intimate Partners About Bodily Differences & Infertility

To understand the experiences of young women with a disorder of sex development when sharing information about their body with healthcare professionals, friends and intimate partners.

Disorders of sex development are lifelong conditions that create bodily difference such as absence of reproductive organs which can impact on young women’s fertility and sexual experiences.

Interpretive phenomenological analysis with thirteen young women (14-19 years old) with a disorder of sex development.

The young women chose to participate in either a face-to-face semi-structured interview or to complete a paper diary between 2011–2012.

A superordinate theme focusing on the meaning bodily differences held for these young women is presented through three themes: self-awareness and communicating this to others; actualizing intimacy; and expressing meaning of altered fertility to self or professionals or partners. During early adolescence, the young women were guarded and reticent about sharing personal information about their disorder of sex development but as they moved towards adulthood, some of the young women learnt to engage in conversations with more confidence. Frustrations about their bodily differences and the limitations of their bodies were talked about as factors which limited physical spontaneity, impacted on their perceived sexual fulfilment and challenged the development or sustainability of close friendships or intimate partnerships. The young women wanted empathic, sensitive support from knowledgeable health professionals to help them understand their bodies.

Attachment and a ‘sense of being’ were the concepts that were closely linked to the young women’s development of a secure identity.

Why is this research needed?
  • Fear of an adverse psychological response has meant that medical information has not always been disclosed to or shared with young women with disorders of sex development.
  • Improved communication by healthcare professionals can help young women with disorders of sex development to understand their condition and explore how they may wish to safeguard or share their health information.
  • Professionals have a responsibility to share all available information that a young woman with a disorder of sex development may find helpful.

What are the key findings?
  • Young women with disorders of sex development may be ‘on guard’ about sharing personal information but over time, they learn to negotiate and navigate these conversations.
  • As the young women move into adulthood and engage in friendships and intimate relationships, their responses to and the meanings they give to infertility change.
  • For young women with a disorder of sex development, bodily intimacy may require planning which has an impact on their perceived expectation of sexual spontaneity in a relationship.

How should the findings be used to influence practice?
  • Nurses have a core role in the multidisciplinary team to help young women with disorders of sex development to understand their disorder, so they can explain their condition to friends and partners.
  • Nurses have a role in ensuring that young women with disorders of sex development transition to adult services with sufficient knowledge of their bodily functions and differences to help them to make informed decisions.
... Grace talked about her hope for a long-term relationship and how difficult, yet important, this was for her:

It’s hard for people like me to get a steady functional intimate relationship. Because if you think about it you’ve got your medical problems to explain for one and a lot of people these days are only out for one thing [sex] and you can’t just tell everyone that you can’t, things get round too fast. You have got to be careful. Everyone says you can have a decent life without a relationship, I don’t think that’s true. I’m sure there is, [someone like me] somewhere out there but I wouldn’t even speak to them about it all, because it’s just too awkward

Grace felt the risk of anecdotes being shared about her was very real; she alluded to having to be competent at judging others before feeling safe enough to disclose information about herself. However, for those already with a partner, the hoped for sexual spontaneity did not always happen, which was frustrating as Harriet struggled to explain:

In some ways yes, I’d like to be like all my mates… they are all doing it after a month but I don’t know, I’m not jealous, I’m far from jealous [about boyfriends] I’m just jealous of them having sex. I have been seeing someone for ages now and I’ve not been able to do anything with him do you know what I mean? He’s like – I’m not bothered. But it bothers me that he’s got to wait so long.. it’s twelve months we’ve been together now….I’m sure it’s not normal

For some young women, vaginally penetrative intercourse was not possible; this then had an impact on their belief about themself as a potential sexual partner. For Harriet, this challenge resulted in a renewed motivation to continue with vaginal dilation that previously she had only undertaken intermittently since she felt it ‘didn’t work’. Intimate relationships had the capacity to provide strong emotional attachments for these young women and to fulfil their need to be cared for and loved by others and to give love in return. For the young women, finding a comfortable level of physical intimacy was an important part of their lives; some had achieved this, for others it was something they aspired to achieve...

Full article at:

Alder Hey Children’s Hospital NHS FT, Liverpool, UK
University of Central Lancashire, Preston, UK
University of Edinburgh, UK
Correspondence to C. Sanders:, e-mail: ku.shn.yehredla@srednas.enilorac

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