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Objective: This paper considers the limitations of traditional prose-based approaches to research dissemination and explores the potential merits and tensions in adopting a poetic approach to disseminate participants’ experiences and perspectives. Discussion: Drawing on our experience of using I-poetry to create first-person poems from our research data we discuss the attractiveness of the subjective, expressive and relational opportunities of poetry, and its ability to compress experience and create emotional connections and evoke emotion. We also reflect upon and discuss the limitations, challenges and criticisms of the use of research poetry, with a specific focus on the use of data poems and their value in disseminating research findings. Conclusion: Using poetry compelled us to think with our data differently and our poems have generated visceral responses from parents and professionals. Research poetry has value within academic and clinical worlds but its greatest potential perhaps lies in providing a means of disseminating research to the wider range of stakeholders.

(EN)The present invention relates to methods and apparatuses for estimating the status of a bladder, especially with respect to the likelihood of an imminent voiding of the bladder. The apparatuses carry out computer-implemented methods of estimating a bladder status employing a bladder monitor which collects bladder data (e.g. using ultrasound) and transmits the bladder data to a data processor for algorithmic conversion to a bladder status. Such algorithms may be trained and tuned to a particular person's bladder. Having established a bladder status based on otherwise esoteric bladder data, the data processor may then trigger an alert signal where the bladder status meets particular criteria indicating an imminent voiding event. Such a trigger signal may be used to alert a nocturnal enuresis patient to an impending void so that they can be awoken before any bedwetting occurs. (FR)La présente invention concerne des procédés et des appareils pour l'estimation de l'état d'une vessie, en particulier par rapport à la probabilité d'une évacuation imminente de la vessie. Les appareils exécutent des procédés mis en oeuvre par ordinateur d'estimation de l'état d'une vessie au moyen d'un moniteur de vessie qui collecte des données de vessie (par exemple au moyen d'ultrasons) et transmet les données de vessie à un processeur de données pour la conversion algorithmique en un état de vessie. De tels algorithmes peuvent être formés et ajustés à la vessie d'une personne particulière. Suite à l'établissement de l'état d'une vessie sur la base des données de vessie autrement ésotériques, le processeur de données peut alors déclencher un signal d'alerte lorsque l'état de vessie satisfait des critères particuliers indiquant l'imminence d'un événement d'évacuation. Un tel signal de déclenchement peut être utilisé pour alerter une énurésie nocturne d'un patient concernant une évacuation imminente, de sorte qu'il puisse être réveillé avant qu'une énurésie nocturne ne se produise.

Adopting an interprofessional team approach to care of the child with rare conditions that can affect sex development (DSD) has been advocated by a consensus document within the last decade. In the United Kingdom, the approach appears orientated towards an interprofessional model with the integration of separate professions working in single consultations with families working collaboratively to focus on care using a person and family-centred lens. This concurrent mixed-methods UK study using questionnaires, observation, and interviews aimed to examine professionals’, patients’, and parents’ expectations and interactions during DSD clinic. In adapting a model of patient and family-centred care, we were able to analyse the dimensions of care at the micro-, meso-, and macro-level. The micro captured the unique nature of the bio-psychosocial aspects of DSD, professional capabilities, and communication. The meso examined shared learning and objective setting as well as aspects of knowledge translation. The macro focused on the operational aspects and the emancipatory knowing embedded within DSD care. Complete data from participants (n = 105) were analysed from 47 outpatient clinical consultations and are reported as numerical data, tables, and participants’ voices. Interestingly, all participants identified topics or concerns that were absent in the dialogues during consultation. Our findings informed the adaptation of a patient-focused model, thereby supporting the development of the concept of patient-centeredness, integration, and collaboration. This framework may serve as a platform, embedding existing evaluative tools and acknowledging the patient and professional partnership necessary in DSD care.

Objective Disorders in sex development (DSD) can be treated well medically, but families will encounter many psychosocial challenges. Promoting counselling to facilitate acceptance and coping is important yet equality of access is unknown. This study investigated the modalities of psychosocial care provided in centres of DSD care. Methods An international survey conducted among 93 providers of psychosocial care, identified through clinical networks, registries and professional forums. results Forty-six respondents from 22 different countries filled out the survey (49%). Most respondents (78%) were based in hospital-based expert teams. Referrals came from paediatric endocrinologists (76%), gynaecologists (39%) and paediatric urologists (37%). Psychological counselling was most frequently given to parents (74%), followed by children (39%), adolescents (37%) and adults (11%) and was most frequently focused on coping and acceptance of DSD (54%), education (52%), the atypical body (39%) and genital (41%), decisions on genital surgery (33%), complications with sexual intercourse (29%), disclosure (28%) and acceptance of infertility (11%). Respondents most frequently observed DSD related confusion about gender (54%), acceptance of cross gender behaviour (50%), anxiety (43%) and sadness and depression (38%). conclusions Most psychosocial care is provided to parents. It is assumed that parental support is important as acceptance is conditional to become affectionate caretakers. Although it may be more difficult for youngsters to communicate about their condition and treatment, providing opportunity to bring up issues that are important for them, is imperative. Clinicians and parents should be aware that parental and patients’ interests may not correspond completely. Psychosocial management should also include transition and adult care.

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, 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 appreciative, 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. Forty-six 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 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.

The objective of this study is to review published literature on bladder augmentation in children and young adults (C&YA) with a neuropathic bladder following a neural tube defect or spinal cord injury to inform nursing practice and patient education. Medline, Embase, CINAHL, PsycINFO and the British Nursing Index were systematically searched to identify studies. The papers reviewed were case studies and medical note review in single centres regarding outcome and post-operative complications. This limits the generalisability of the findings surrounding outcome and risk of bladder augmentation surgery in C&YA. Evidence suggests irrigation has a role in ongoing bladder management to reduce complications such as bladder calculi. However, data are sparse regarding both appropriate irrigation solutions and the frequency of irrigation necessary to minimise calculi formation. A statistically significant increase is noted in the risk of perforation following bladder augmentation when associated with bladder neck surgery at the time of primary surgery. Limited evidence exists regarding longer term systemic implications of bladder augmentation, such as malignancy or impact on bone mineral density. None of the studies demonstrated an overall improvement in health-related quality of life (HRQoL) following bladder augmentation. Discrepancies exist between parental and children's HRQoL scores. Bladder augmentation is clinically the standard surgical treatment used to manage refractory neuropathic bladder. However, current evidence demonstrates no improvements to HRQoL following surgery and also describes various complications. Future research in this area is necessary to explore standards of care and most importantly long-term outcome measures from the patient and professional perspective.

BACKGROUND: To explore the current models of practice in centres delivering specialist care for children with disorders of sex development (DSD), an international survey of 124 clinicians, identified through DSDnet and the I-DSD Registry, was performed in the last quarter of 2014.RESULTS: A total of 78 (63 %) clinicians, in 75 centres, from 38 countries responded to the survey. A formal national network for managing DSD was reported to exist in 12 (32 %) countries. The paediatric specialists routinely involved in the initial evaluation of a newborn included: endocrinologist (99 %), surgeon/urologist (95 %), radiologist (93 %), neonatologist (91 %), clinical geneticist (81 %) and clinical psychologist (69 %). A team consisting of paediatric specialists in endocrinology, surgery/urology, clinical psychology, and nursing was only possible in 31 (41 %) centres. Of the 75 centres, 26 (35 %) kept only a local DSD registry and 40 (53 %) shared their data in a multicentre DSD registry. Attendance in local, national and international DSD-related educational programs was reported by 69, 78 and 84 % clinicians, respectively. Participation in audits/quality improvement exercises in DSD care was reported by 14 (19 %) centres. In addition to complex biochemistry and molecular genetic investigations, 40 clinicians (51 %) also had access to next generation sequencing. A genetic test was reported to be more preferable than biochemical tests for diagnosing 5-alpha reductase deficiency and 17-beta hydroxysteroid dehydrogenase 3 deficiency by 50 and 55 % clinicians, respectively.CONCLUSION: DSD centres report a high level of interaction at an international level, have access to specialist staff and are increasingly relying on molecular genetics for routine diagnostics. The quality of care provided by these centres locally requires further exploration.

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.

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 semistructured 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.

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.