Thursday, 23 April 2015

Young women with a disorder of sex development: Learning to share information with health professionals, friends and intimate partners about bodily differences and infertility

Caroline Sanders

Differences of sex development (DSD) can result in young women’s bodies looking and functioning differently to what is expected within generalised society. Learning to talk about yourself and your body to others can be difficult for all adolescents and it is a normal aspect of psychosocial development. For those young women with DSD understanding their difference can be difficult as their knowledge is often gathered from parents who may not recall or be able to share information.

Our paper describes how a group of these young women started to think about self and others, as important aspects of attachment. There is a need for these young women to master complex medical information that can inform how they understand their bodies at the same time as explore their physical and emotional comfort in sharing information. Nurses and other professionals, within multi-disciplinary DSD teams, have the opportunity to support these young women to move from the theory behind understanding their condition to having the courage and confidence to share aspects of their difference in ways that meet these young women’s needs.


Dr Caroline Sanders, PhD, MBE, PGD, PGC, RN
Alder Hey Children’s Hospital and University of Central Lancashire



Reference

Sanders C, Carter B, Lwin R (2015) Young women with a disorder of sex development: learning to share information with health professionals, friends and intimate partners about bodily differences and infertility Journal of Advanced Nursing doi: 10.1111/jan.1266


Tuesday, 21 April 2015

Disorders of sex development in young women

Roger Watson, Editor-in-Chief

Talking about sex is never easy but if that is in the context of a disorder of sex development, it must be even more difficult. Research reported in an article by Sanders et al. (2015) titled: 'Young women with a disorder of sex development: learning to share information with health professionals, friends and intimate partners about bodily differences and infertility' and published in JAN set out, as the authors explain: '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.'

Thirteen women in the UK with a disorder of sex development aged between 14-19 years were interviewed and completed diaries over 6 months.  Sex development disorders included chromosomal disorders, vaginal atresia, where the vagina is either absent or closed, cloacal anomalies, where only one opening is present for gastrointestinal, urinary and reproductive systems, and congenital adrenal hyperplasia, which leads to unusual genitalia in women.

It is especially difficult for young girls to find out about their conditions; most obtained information from their parents.  They also found it difficult to tell friends too much for fear of the details being shared with others.  For some women, normal penetrative sexual intercourse was never going to be possible leading to fears about intimacy and sexual partnership.  Some women would never have children and some of those who could did not want to for fear of passing on their condition.

Concluding the article, in their own words, the authors say: 'Health professionals need to consider taken-for-granted assumptions, such as those relating to sexual intimacy; some of the young women felt that health professionals assumed they would be in heterosexual relationships while some were in same sex relationships. The development of attachment, intimacy and identity are inextricably linked. Health professionals should acknowledge the impact that bodily difference has on young women’s ability to build a secure identity and adjust to the meaning bodily differences have to them and the impact of their infertility.'

You can listen to this as a podcast.


Reference

Sanders C, Carter B, Lwin R (2015) Young women with a disorder of sex development: learning to share information with health professionals, friends and intimate partners about bodily differences and infertility Journal of Advanced Nursing doi: 10.1111/jan.1266


Tuesday, 14 April 2015

What do nurses actually do?

Roger Watson, Editor-in-Chief

We all think we know what a nurse is and most think they know what a nurse does.  But is this the same globally?  Even in one country, the range of what any group of nurses does is wide, ranging from 'basic' care to minor procedures and prescribing. In the UK, for instance, what a nurse does in one hospital may be specific to that hospital and may not apply in another.  This phenomenon is referred to as the 'scope of practice'.  Therefore, it is logical and essential that we study this and, as the authors of this study, Kennedy et al. (2015), say: 'regulatory authorities and nurses should recognize that scope of practice and the associated responsibility for decision-making provides a very public statement about the status of nursing in a given jurisdiction'.  The study to which I refer is titled: 'Comparative analysis of nursing and midwifery regulatory and professional bodies’ scope of practice and associated decision-making frameworks: a discussion paper'; it was carried out by a team in Ireland and is published in JAN.

Twelve international regulatory frameworks were reviewed in detail following a systematic process of retrieval and the sources are summarised in an extensive table.  The study found that the approaches to developing scopes of practice did not emphasise patient choice and focused on the technical rather than the aesthetic aspects of nursing.  The authors conclude: 'Such frameworks are predicated on the practitioner being familiar with legislation and guidelines that regulate and control practice and that may enable or prohibit role expansion. They are also predicated on individuals having sophisticated skills in reflection and self-judgement in relation to their competence, knowledge and skills.'

Listen to this as a podcast.


Reference

Kennedy C, O’Reilly P, Fealy G,  Casey M, Brady A-M, McNamara M, Prizeman G, Rohde D, Hegarty J (2015) Comparative analysis of nursing and midwifery regulatory and professional bodies’ scope of practice and associated decision-making frameworks: a discussion paper Journal of Advanced Nursing doi: 10.1111/jan.12660


Thursday, 26 March 2015

Social Media Editor Vacancy

Applications are invited for the position of

Social Media EditorJournal of Advanced Nursing

We are seeking applications for this exciting new position within one of the leading international nursing journals.

The journal has a successful social media presence, but we are now seeking a dedicated Social Media Editor to drive forward our ambitious social media strategy. The successful candidate for the position of Social Media Editor will possess the following skills and attributes:
  • Background in nursing research 
  • Excellent understanding of social media platforms, strategies and trends
  • Good networks and connections in the nursing community
  • Understanding of JAN’s brand and ethos
  • Energetic and pro-active approach
  • Excellent communication skills

The main functions within this role are:
  • Maintaining and increasing current activity on Twitter, the JANinteractive blog and YouTube
  • Engaging in conversations and forming connections with relevant organisations and opinion leaders
  • Creating and inviting social media content
  • Making recommendations regarding new platforms and activities that could increase JAN’s reach, and advising on trends

The post involves working closely with the Publisher, the other Editors, and the Editor-in-Chief. Applicants should note that this position requires a weekly commitment of time, with additional days required for meetings. The successful candidate would ideally start work on the journal in June 2015.

Applications should include a curriculum vitae, a short assessment of the strengths and weaknesses of JAN’s current social media presence, and an accompanying letter outlining the skills you will bring to this position.

Please send your application, in confidence, to:
Rosie Hutchinson, Senior Journals Publishing Manager, Wiley: jan@wiley.com

Applications to arrive no later than 20th April 2015