Aim
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.
Background
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.
Design
Interpretive phenomenological analysis with thirteen young women
(14-19 years old) with a disorder of sex development.
Methods
The young women chose to participate in either a face-to-face
semi-structured interview or to complete a paper diary between 2011–2012.
Results
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.
Conclusion
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.
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: http://goo.gl/B8j20Z
By:
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
More at: https://twitter.com/hiv_insight
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