Caroline Sanders

UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development

It is paramount that any child or adolescent with a suspected disorder of sex development (DSD) is assessed by an experienced clinician with adequate knowledge about the range of conditions associated with DSD. If there is any doubt, the case should be discussed with the regional team. In most cases, particularly in the case of the newborn, the paediatric endocrinologist within the regional DSD team acts as the first point of contact. The underlying pathophysiology of DSD and the strengths and weaknesses of the tests that can be performed should be discussed with the parents and affected young person and tests undertaken in a timely fashion. This clinician should be part of a multidisciplinary team experienced in management of DSD and should ensure that the affected person and parents are as fully informed as possible and have access to specialist psychological support. Finally, in the field of rare conditions, it is imperative that the clinician shares the experience with others through national and international clinical and research collaboration.

Society for Endocrinology UK guidance on the initial evaluation of an infant or an adolescent with a suspected disorder of sex development (Revised 2015)

It is paramount that any child or adolescent with a suspected disorder of sex development (DSD) is assessed by an experienced clinician with adequate knowledge about the range of conditions associated with DSD. If there is any doubt, the case should be discussed with the regional DSD team. In most cases, particularly in the case of the newborn, the paediatric endocrinologist within the regional team acts commonly as the first point of contact. This clinician should be part of a multidisciplinary team experienced in management of DSD and should ensure that the affected person and parents have access to specialist psychological support and that their information needs are comprehensively addressed. The underlying pathophysiology of DSD and the strengths and weaknesses of the tests that can be performed should be discussed with the parents and affected young person and tests undertaken in a timely fashion. Finally, in the field of rare conditions, it is imperative that the clinician shares the experience with others through national and international clinical and research collaboration.

The histology and management of ovarian cysts found in children and adolescents presenting to a children's hospital from 1991 to 2007: a call for more paediatric gynaecologists.

Please cite this paper as: Hernon M, McKenna J, Busby G, Sanders C, Garden A. The histology and management of ovarian cysts found in children and adolescents presenting to a children’s hospital from 1991 to 2007: a call for more paediatric gynaecologists. BJOG 2010;117:181–184.

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

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.

A Review of Current Practice for Boys Undergoing Hypospadias Repair: From Pre-Operative Work up to Removal of Dressing Post-Surgery

The aim of this article was to examine an area from clinical practice, in this instance, paediatric urology and to look at the information needs of families prior to their young sons’ having surgery to correct a hypospadias. Involving families and promoting informed decision-making with families prior to hypospadias repair for their child is important. To be able tofacilitate real involvement the information has to be shared and parents and families given adequate support and opportunity to seek answers to questions. Providing an environment to undertake this, to then learn from the families for the future and to support the development of a National Support group, www.hypospadias.co.uk have been outcomes from setting up a pre-admission clinic. Literature in respect of after-care is very sparse. It became evident from clinical practice that the rationale for applying a dressing postoperatively needed to be explored. Furthermore limited evidence about dressing removal, coupled with the anxiety and upset this caused parents, identified the need to consider two issues (i) a better method of removal of dressings and (ii) the effects on pain scores. A blinded randomized controlled feasibility study was developed and implemented, with completion due at the end of 2001.

A Qualitative Study of Communication between Young Women with Disorders of Sex Development and Health Professionals

Background and Objectives. Health communication is a critical aspect of care for both providers and recipients having a direct influence on engagement and outcomes. Communicating which in this context includes talking and listening in order to share information or support young women to understand their DSD can be difficult especially since the topic area is sensitive. Methods. In this qualitative study thirteen young women (aged 14–19 years) with a disorder of sex development who engaged with health care professionals were purposively recruited between 2011 and 2012 from three specialist centres across the United Kingdom. The young women either were interviewed or completed a diary about their experiences of communication with a range of health care professionals. An interpretative phenomenological approach was used to analyse these data. Results. By analysis of data the young women were able to clearly articulate the qualities and skills health professional needed in relation to communication. Two main categories focused on the duty in which professionals have to share information and their role in supporting young women to manage this information. Discussion and Conclusion. The study results revealed that these young women with a DSD expected to meet skilled professionals who could recognise the emotional aspects of dialogues in the short and longer term.

Exploring young people's expectations and experiences of discussing sexual and relationship health with professionals in a children's hospital.

AIM AND OBJECTIVE The purpose of this study was to explore young peoples expectations and experiences of discussing sexual and relationship health with healthcare professionals whilst attending or having been admitted to an acute childrens hospital. BACKGROUND Sexual health and teenage pregnancy are topics of debate in the context of public health. Programmes that provide sexual and relationship education to young people are often delivered in education and/or community health settings. However, a significant proportion of young people access acute health services, yet the literature on acute service providers opportunistically providing sexual and relationship advice to young people is limited. DESIGN Survey. METHODS One hundred young people attending either an outpatient appointment or being discharged following an in-patient episode on a hospital ward were approached to complete a questionnaire. Discussion of the questionnaire findings was undertaken with a group of eight young people, which enriched the interpretation and provided clarity of the findings. RESULTS The topic of sexual and relationship health was important to young people. Although young people infrequently sought advice when in acute settings, they wanted to know there was a choice to discuss these issues with healthcare professionals in the hospital. Young people suggested that professionals needed to have a level of sensitivity and confidence to be able to initiate sexual and relationship discussions with young people. CONCLUSION The information from the questionnaires and the discussion group highlighted that young people feel they need to know there is an option to discuss sexual and relationship health whilst attending or being admitted to an acute childrens hospital. By giving young people a choice to participate or decline in dialogues about sexual and relationship health, a degree of empowerment and level of respect can be encouraged between young people and healthcare professionals. RELEVANCE TO CLINICAL PRACTICE Healthcare professionals need to be mindful of opportunities to engage young people in maximising their health and well-being, this includes providing them with a choice to discuss sexual and relationship health issues in any health setting.

Paediatric catheterisation: exploring and understanding children’s nurses’ perceptions and practice in an acute setting

AIMS AND OBJECTIVES This research study explored the factors which influenced the ability of childrens nurses to urethrally catheterise children in their care. BACKGROUND There is currently limited evidence to inform the clinical skills training of childrens nurses and the impact of competencies and other educational documents on practice. The project aimed to use data to inform local service provision and the design and development of future training programmes in an acute paediatric hospital. DESIGN A mixed method study using questionnaires and focus groups. METHODS Data were obtained through two focus groups (n = 10) and questionnaires (n = 34, response rate 88%) with trained childrens nurses to explore the influencing factors on their ability to conduct this clinical skill. RESULTS The childrens nurses discussed that barriers to being competent and confident to catheterise included a lack of exposure to the clinical skill, increasing awareness of the role of competencies and litigation and the presence of specialist roles. Current catheterisation training was evaluated positively with most nurses stating their knowledge and clinical skills had increased; despite this only 55% (n = 18) identified that would feel able to catheterise a child in their care. CONCLUSIONS Comprehensive training of all childrens nurses in an acute care setting may not provide a workforce, which is competent and confident in urethrally catheterising children, and resources for training may be more appropriately deployed to ensure the optimum care of children and families. RELEVANCE TO CLINICAL PRACTICE This study highlights the difficulties encountered for clinical nurses to remain competent in infrequently used clinical skills. This has relevance to the challenges of providing a multi-skilled workforce in childrens nursing.

“Knowing the Places of Care”: How Nurses Facilitate Transition of Children with Complex Health Care Needs from Hospital to Home

ABSTRACT The number of children with complex health care needs continues to rise and they often have prolonged hospital stays with their discharge home being delayed by a range of factors. These delays occur despite the fact that, except in extraordinary circumstances, a child’s home is the most appropriate place for them to receive long-term care. The aim of this qualitative interview-based study was to explore the work of nurses whose main role is supporting children and families move from an institutional place of care to long-term care within the family home. Analysis of interview transcripts was collaborative, interpretive, and thematic. A total of 46 participants (9 nurses and 37 local stakeholders) engaged in the study. Findings reflect the ways in which the nurses facilitated transition of children with complex needs from hospital to home and the journeys the nurses took to develop the skills, knowledge, and networks needed to support this transition. “Knowing the places of care” was fundamental to the success of the nurses’ work. As the nurses’ knowledge of the places (and processes) of care deepened, they were better able to act as informed guides to families and other professionals and to improve care. The nurses’ practice was driven by the belief that the place where care occurs matters. Home was seen as a transformative and sustaining place where caring practices could become incorporated into an environment in which the family could exist and be nurtured together.

Examining professionals' and parents' views of using transanal irrigation with children: Understanding their experiences to develop a shared health resource for education and practise.

Irrigation as a bowel management approach has been reportedly used with children for more than 20 years. Parents managing their child’s chronic bowel problem have previously been shown to have increased emotional stress. The aim of this study was to explore professionals’ (n = 24) understanding and parents’ (n = 18) experiences of using transanal irrigation with children at home as a mid to longer term bowel management approach. This study was underpinned by action research methodology and used mixed methods determined by an action research group of parents, professionals, researchers, a voluntary sector worker, commercial representative and independent observer. Data informed the study outcome which was the development and evaluation of a shared health resource to support professionals in their holistic approach when prescribing transanal irrigation and guide parents in the areas of education, management, problem solving, support and goal setting. The resource includes constructed case studies from parents of their experiences to inform choice and decision-making between parents and professionals. The shared health resource provides an approach to initiating and evaluating transanal irrigation and is available in a paper format from key Internet sites across hospital, community and voluntary services.