Multi-stakeholder opinion statement on the care of individuals born with differences of sex development: common ground and opportunities for improvement.

BACKGROUND: In the last 15 years, the care provided for individuals born with differences of sex development (DSD) has evolved, with a strong emphasis on interdisciplinary approaches. However, these developments have not convinced some stakeholders to embrace the current model of care. This care model has also paid insufficient attention to socio-cultural differences and global inequalities. SUMMARY: This article is an opinion statement, resulting from in-depth discussions and reflection among clinicians, patients, and family support organizations based in the US and Europe, where we seek areas of common ground and try to identify opportunities to further develop resources. The product of these conversations is summarized in 10 panels. The corresponding sections provide additional discussion on some of the panel items. KEY MESSAGES: Participants identified areas of agreement and gained a deeper understanding of the reasons behind disagreements on certain matters and identified the necessary steps to foster future consensus. We offer preliminary recommendations for guiding clinical management and resource allocation. By promoting a broader consensus, we aim to enhance the quality of care and well-being for individuals of all ages who have a DSD.

Ontological insecurity of inattentiveness: Conceptualizing how risk management practices impact on patient recovery when admitted to an acute psychiatric hospital.

Risk management which assesses and mitigates risks such as suicide and violence is under scrutiny, particularly within psychiatric inpatient settings. Restrictive practices, which result from risk assessment, such as observations, physical restraint and ward seclusion can impact negatively on patient recovery, hindering abilities to develop a meaningful life that emphasizes purpose, hope and autonomy, despite experiencing mental distress. Yet, less is known about the impact from the patient's perspective when first admitted to hospital, a period which among other reasons may come with increasing risk management practices owing to the clinical uncertainties about patient risks. In this grounded theory study, we explore the impact on recovery, interviewing 15 adult participants with patient experiences of being in an acute hospital. The main theme of the study, termed a core category with a grounded theory, was identified as "ontological insecurity of inattentiveness". This highlighted a staff inattentiveness with involving patients with risk management and explaining the purposes of the practice, which raised insecurities about what was happening to the patients when admitted to hospital. Four subcategories support the core category; discounting the patients' experiences to gain a meaningful grasp of risk management, ambiguity about risk management rules, particularly the reasons around their use, forebodingness to the hospital environment and, management from afar, with patients feeling scrutinized from observations without a voice to offer different views. It is hoped these findings will add to the field of patient involvement in psychiatric inpatient settings, proposing attempts to raise understanding and inclusivity of risk management, starting when first admitted to hospital.

Inequality in uptake of bowel cancer screening by deprivation, ethnicity and smoking status: cross-sectional study in 86 850 citizens.

BACKGROUND: Survival from colorectal cancer depends on stage at detection. In England, bowel cancer mortality has historically been highest in deprived areas. During the initial stages of the COVID-19 pandemic, it was necessary to temporarily halt many screening programmes, which may have led to inequalities in uptake since screening restarted. METHODS: Cross-sectional data from the Bristol, North Somerset and South Gloucestershire Systemwide Dataset were analyzed. Associations of baseline characteristics with uptake of bowel screening were examined using logistic regression. RESULTS: Amongst 86 850 eligible adults aged 60-74 years, 5261 had no screening record. There was little evidence of association between no screening and sex (adjusted odds ratio 0.95 (95% confidence interval 0.90, 1.02)). Absence of screening record was associated with deprivation (1.26 (1.14, 1.40) for the most compared with the least deprived groups), smoking (1.11 (1.04, 1.18)) compared with no smoking record and black (1.36 (1.09, 1.70)) and mixed (1.08 (1.01, 1.15)) ethnicity compared with white ethnicity. CONCLUSIONS: In a data set covering a whole NHS Integrated Care Board, there was evidence of lower uptake of bowel cancer screening in adults living in more deprived areas, of minority ethnic groups and who smoked. These findings may help focus community engagement work and inform research aimed at reducing inequalities.

The role of mental health nurses in planetary health.

This article will critically explore the concept of planetary health and locate the role and identity of the mental health nurse (MHN) within it. Like humans, our planet thrives in optimum conditions, finding the delicate balance between health and ill-health. Human activity is now negatively impacting the homeostasis of the planet and this imbalance creates external stressors that adversely impact upon human physical and mental health at the cellular level. The value and understanding of this intrinsic relationship between human health and the planet is in danger of being lost within a society that views itself as being separate and superior to nature. The Period of Enlightenment witnessed some human groups viewing the natural world and its resources as something to exploit. White colonialism and industrialization destroyed the innate symbiotic relationship between humans and the planet beyond recognition and in particular, overlooking the essential therapeutic role nature and the land facilitated within the well-being of individuals and communities. This prolonged loss of respect for the natural world continues to breed human disconnection on a global scale. The healing properties of nature have effectively been abandoned within healthcare planning and infrastructure, which continue to be driven principally by the medical model. Under the theory of holism, mental health nursing values the restorative capabilities of connection and belonging, employing skills to support the healing of suffering, trauma and distress, through relationships and education. This suggests MHNs are well situated to provide the advocacy the planet requires, through the active promotion of connecting communities to the natural world around them, both healing the other.

Listening to Individuals with Differences in Sex Development or Intersex and Their Families: "Not Doing Surgery Does Not Mean Doing Nothing".

Informed decision-making and considerations of the child's best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the well-being of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what "doing something and doing nothing" really means when learning about nonsurgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care for children and youth with DSD and their parents. Without actionable tools or approaches, parents cannot make informed decisions about their child's health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness and gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end, an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author's experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team-based psychological care, and psychosocial approaches across the lifespan.

Giving a voice to patient experiences through the insights of pragmatism.

As a philosophical position, pragmatism can be critiqued to distinguish truth only with methods that bring about desired results, predominantly with scientific enquiry. The article hopes to dismiss this oversimplification and propose that within mental health nursing, enquiry enlightened by pragmatism can be anchored to methods helping to tackle genuine human problems. Whilst pragmatists suggest one reality exists, fluctuating experiences and shifting beliefs about the world can inhabit within; hence, pragmatists propose reality has the potential to change. Moreover, pragmatism includes being cognisant of what works to whom reality concerns, making reality context-driven, with a view to understand how actions shape experiences so what is generated has usefulness. Hence, it somewhat follows pragmatism can inform mental health nursing, after all, nursing is a discipline of action, and awareness is needed in how actions produce experiences that patients find helpful. Given the principles of recovery are preferably adopted in mental health care, the paper will explore how pragmatism can help nurses move towards that goal; specifically, with patients voicing their experiences. This is because like pragmatism, recovery subscribes to hope that reality can progress, and through meaningful experiences and beliefs, patients have expertise about personal difficulties alongside how life may flourish, despite mental illness.

Approaches to reviewing the literature in grounded theory: a framework.

BACKGROUND: There is considerable debate about how to review the literature in grounded theory research. Notably, grounded theory typically discourages reviewing the literature before data are collected and analysed, so that researchers do not form preconceptions about the theory. However, it is likely researchers will need to review the literature to show they intend to address a gap in knowledge with their research. This might confuse novice researchers, especially given that different approaches to grounded theory can have contrasting positions concerning how and when literature should be reviewed. AIM: To provide an overview of grounded theory and how different approaches might tackle literature reviews. DISCUSSION: A framework is presented to illustrate some of the commonalities between grounded theory approaches, to guide novice researchers in reviewing the literature. The framework acknowledges some of the tensions concerning researchers' objectivity and sketches three phases for researchers to consider when reviewing the literature. CONCLUSION: Reviewing the literature has different meanings and implications when using grounded theory compared with other research methodologies. IMPLICATIONS FOR PRACTICE: Novice researchers must be attuned to the different ways of reviewing the literature when using grounded theory.

Patient perspectives of helpful risk management practices within mental health services. A mixed studies systematic review of primary research.

WHAT IS KNOWN ABOUT THE SUBJECT?: Risk in psychiatry involves harm to self or others owing to mental health difficulties, for example iatrogenic effects of treatment, self-harm, suicide and violence. Risk management is a framework to minimize risks, comprising of risk assessment, generation of risk management plans and evaluation of interventions. Literature has extensively explored risk management and presented a critique that its practices can lead to patient harm. However, there is a paucity of literature about what patients identify as helpful risk management practices, despite the potential for such patient views to ameliorate harm and improve mental health care. WHAT THIS PAPER ADDS TO EXISTING KNOWLEDGE: Interpersonal relationships with clinicians, and communication that keeps patients involved and informed of management processes, were found to be central to beneficial risk management practices, while patients having agency and autonomy to influence their participation was also important. Beneficial interpersonal relationships and connectivity in the form of patients' wider community of support were found to be influential in aiding risk management. Meaningful relationships, and particularly peer support, that maintained personal and collective identities were prevalent in the literature. WHAT ARE THE IMPLICATIONS FOR PRACTICE?: Rendering risk management more visible and accessible in practice might cultivate an openness that promotes patient participation. This includes drawing on a wider network of support, for example the patient's friends and family, as well as having advocacy utilizing peer support. Abstract Introduction Minimizing the harm that patients pose to themselves and others, due to mental health difficulties, is a central component of risk management in psychiatry. However, risk management itself can cause patient harm, but despite this and the potentially informative value of lived experience, little is known about what patients want or expect from risk management. Aim To review research and explore what patients consider beneficial in risk management practice. Method A mixed studies systematic review utilizing PRISMA guidelines, alongside a convergent qualitative design to categorize findings. Results Twelve papers were identified, generating two categories of beneficial practices: interpersonal relationships and communication with clinicians; coupled with patient agency in their own risk management. Discussion Connectivity appears important. Particularly patients feeling involved, and their voices being heard in both the identification of risks and then shaping risk management practice. Moreover, this included involvement of friends, family and peers to widen input and supportive networks beyond clinical relationships. Implications for Practice Risk management needs to be an accessible part of care, which is more inclusive of patient views and needs. The latter might also be aided by drawing on the patient's wider community in order to provide more effective support and risk management.

Social justice, capabilities and learning support provided by lecturers: A phenomenological-hermeneutic study.

Many student nurses require additional support to undertake university level education. Lecturers are well placed to deliver learning support, which may enrich attainment with assignments. Yet fairness in how support is offered, for example if it is accessible and enables learning abilities, may impact on its utility. This study examined these aspects, exploring capabilities of learning support provided by lecturers. Capabilities are a feature of a social justice theory and involve having opportunities that shape abilities, to achieve, or strive for outcomes people value. Hence, identifying capabilities of learning support may enlighten what develops equity in how students are able to utilise lecturers' support and develop their abilities to learn. A phenomenological-hermeneutic research approach was adopted, employing focus groups to explore lived experiences of learning support provided by lecturers. Capabilities were located within the social contacts of students and lecturers, identified as themes; 'collaborative relationships', 'making space for learning', and 'modelling'. Findings were consolidated illustrating lecturers' interaction with students' enhanced capabilities in how students could utilise support, to progress learning abilities. It is hoped these insights develop understanding in what might have utility when lecturers aid learning and show a relevancy of social justice when students are assisted within university.

Interventions that enhance health services for parents and infants to improve child development and social and emotional well-being in high-income countries: a systematic review.

BACKGROUND: Experiences in the first 1000 days of life have a critical influence on child development and health. Health services that provide support for families need evidence about how best to improve their provision. METHODS: We systematically reviewed the evidence for interventions in high-income countries to improve child development by enhancing health service contact with parents from the antenatal period to 24 months postpartum. We searched 15 databases and trial registers for studies published in any language between 01 January 1996 and 01 April 2016. We also searched 58 programme or organisation websites and the electronic table of contents of eight journals. RESULTS: Primary outcomes were motor, cognitive and language development, and social-emotional well-being measured to 39 months of age (to allow the interventions time to produce demonstrable effects). Results were reported using narrative synthesis due to the variation in study populations, intervention design and outcome measurement. 22 of the 12 986 studies identified met eligibility criteria. Using Grading of Recommendations Assessment, Development and Evaluation (GRADE) working group criteria, the quality of evidence overall was moderate to low. There was limited evidence for intervention effectiveness: positive effects were seen in 1/6 studies for motor development, 4/11 for language development, 4/8 for cognitive development and 3/19 for social-emotional well-being. However, most studies showing positive effects were at high/unclear risk of bias, within-study effects were inconsistent and negative effects were also seen. Intervention content and intensity varied greatly, but this was not associated with effectiveness. CONCLUSIONS: There is insufficient evidence that interventions currently available to enhance health service contacts up to 24 months postpartum are effective for improving child development. There is an urgent need for robust evaluation of existing interventions and to develop and evaluate novel interventions to enhance the offer to all families. PROSPERO REGISTRATION NUMBER: CRD42015015468.

What activities might facilitate personal recovery for adults who continue to self-harm? A meta-synthesis employing the connectedness/hope and optimism/identity/meaning/empowerment framework.

Self-harm is an international concern. While treatment in health care focusses on methods to reduce the act, there is less exploration in how to assist adults who are unable to minimize their self-harm. In order to aid these people, in the present systematic review, we employed a qualitative meta-synthesis to explore the lived experience of what activities might facilitate personal recovery for adults who continue to self-harm. Findings were interpreted by drawing on the CHIME framework; a taxonomy of personal recovery comprising of connectedness, hope and optimism, identity, meaning and purpose, and empowerment. The located activities in the review converged on different support groups, and although face-to-face groups were discovered, the majority highlighted the benefits of Internet forums where mutuality and reciprocity were key to promoting personal recovery. Adults desired time to share accounts of themselves, to develop connection and identity. Furthermore, hope was established by group members accepting that self-harm has a role, while congregating with others who did not judge the act. Helping relationships also promoted hope by having a balance between goals and protection against disappointment. The nature of writing online seemingly had cathartic properties fostering meaning, alongside empowerment being facilitated by adults controlling the narrative of their self-harm. It is hoped that these insights might guide self-harm research to develop beyond the confines of minimizing self-injury in health care.

Chain of events analysis for a scuba diving fatality.

INTRODUCTION: A scuba diving fatality usually involves a series of related events culminating in death. Several studies have utilised a chain of events-type analysis (CEA) to isolate and better understand the accident sequence in order to facilitate the creation of relevant countermeasures. The aim of this research was to further develop and better define a process for performing a CEA to reduce potential subjectivity and increase consistency between analysts. METHODOLOGY: To develop more comprehensive and better-defined criteria, existing criteria were modified and a template was created and tested using a CEA. Modifications comprised addition of a category for pre-disposing factors, expansion of criteria for the triggers and disabling agents present during the incident, and more specific inclusion criteria to better encompass a dataset of 56 fatalities. Four investigators (raters) used both the previous criteria and this template, in randomly assigned order, to examine a sample of 13 scuba diver deaths. Individual results were scored against the group consensus for the CEA. Raters' agreement consistency was compared using the Index of Concordance and intra-class correlation coefficients (ICC). RESULTS: The template is presented. The index of concordance between the raters increased from 62% (194/312) using the previous criteria to 82% (257/312) with use of this template indicating a substantially higher inter-rater agreement when allocating criteria. The agreement in scoring with and without template use was also quantified by ICC which were generally graded as low, illustrating a substantial change in consistency of scoring before and after template use. CONCLUSION: The template for a CEA for a scuba diving fatality improves consistency of interpretation between users and may improve comparability of diving fatality reports.

Diving with pre-existing medical conditions.

INTRODUCTION: This is the second report based on a survey of Divers Alert Network Asia-Pacific (DAN AP) members who dive with cardiovascular and respiratory conditions and diabetes. It examines the medical management of the divers' conditions, any diving modifications used to mitigate the risk and outcomes. METHODOLOGY: An online cross-sectional survey was sent to 833 divers who had declared a targeted medical condition when applying for DAN AP membership between July 2009 and August 2013. RESULTS: Two-hundred-and-sixty-eight respondents (32%) provided sufficient information on their conditions to be included in the analyses. These included ischaemic heart disease (31), arrhythmias (20), cardiac septal defects (31), other cardiac conditions (10), hypertension (127), diabetes (25), asthma (40) and pneumothorax (5). Forty-nine per cent had sought specialist diving medical advice about their condition and 23% reported modifying their diving practices to mitigate their risk. The cohort had completed 183,069 career dives, 57,822 of these since being diagnosed with their medical condition. There were 27 individuals who reported having decompression illness (25 of whom were subsequently diagnosed with a persistent foramen ovale), and two individuals who experienced an arrhythmia during diving. CONCLUSIONS: Some DAN AP members are diving with medical conditions which could potentially impact the safety of their diving. A minority modified their diving practices to mitigate the risk of their condition and approximately half sought specialist diving medical advice. The incidence of diving-related problems precipitated by known and managed pre-existing health conditions seems low but further studies of larger cohorts and incorporating fatality data would be necessary to confirm this. These results are limited by the 32% response rate and potential for bias towards selection of those most careful with their health.

Estimating the risk of a scuba diving fatality in Australia.

INTRODUCTION: There are few data available on which to estimate the risk of death for Australian divers. This report estimates the risk of a scuba diving fatality for Australian residents, international tourists diving in Queensland, and clients of a large Victorian dive operator. METHODOLOGY: Numerators for the estimates were obtained from the Divers Alert Network Asia-Pacific dive fatality database. Denominators were derived from three sources: Participation in Exercise, Recreation and Sport Surveys, 2001-2010 (Australian resident diving activity data); Tourism Research Australia surveys of international visitors to Queensland 2006-2014 and a dive operator in Victoria 2007-2014. Annual fatality rates (AFR) and 95% confidence intervals (95% CI) were calculated using an exact binomial test. RESULTS: Estimated AFRs were: 0.48 (0.37-0.59) deaths per 100,000 dives, or 8.73 (6.85-10.96) deaths per 100,000 divers for Australian residents; 0.12 (0.05-0.25) deaths per 100,000 dives, or 0.46 (0.20-0.91) deaths per 100,000 divers for international visitors to Queensland; and 1.64 (0.20-5.93) deaths per 100,000 dives for the dive operator in Victoria. On a per diver basis, Australian residents are estimated to be almost twenty times more likely to die whilst scuba diving than are international visitors to Queensland, or to lower than fourfold on a per dive basis. On a per dive basis, divers in Victoria are fourteen times more likely to die than are Queensland international tourists. CONCLUSIONS: Although some of the estimates are based on potentially unreliable denominator data extrapolated from surveys, the diving fatality rates in Australia appear to vary by State, being considerably lower in Queensland than in Victoria. These estimates are similar to or lower than comparable overseas estimates, although reliability of all such measurements varies with study size and accuracy of the data available.

Study protocol: the Childhood to Adolescence Transition Study (CATS).

BACKGROUND: Puberty is a multifaceted developmental process that begins in late-childhood with a cascade of endocrine changes that ultimately lead to sexual maturation and reproductive capability. The transition through puberty is marked by an increased risk for the onset of a range of health problems, particularly those related to the control of behaviour and emotion. Early onset puberty is associated with a greater risk of cancers of the reproductive tract and cardiovascular disease. Previous studies have had methodological limitations and have tended to view puberty as a unitary process, with little distinction between adrenarche, gonadarche and linear growth. The Childhood to Adolescence Transition Study (CATS) aims to prospectively examine associations between the timing and stage of the different hormonally-mediated changes, as well as the onset and course of common health and behavioural problems that emerge in the transition from childhood to adolescence. The initial focus of CATS is on adrenarche, the first hormonal process in the pubertal cascade, which begins for most children at around 8 years of age. METHODS/DESIGN: CATS is a longitudinal population-based cohort study. All Grade 3 students (8-9 years of age) from a stratified cluster sample of schools in Melbourne, Australia were invited to take part. In total, 1239 students and a parent/guardian were recruited to participate in the study. Measures are repeated annually and comprise student, parent and teacher questionnaires, and student anthropometric measurements. A saliva sample was collected from students at baseline and will be repeated at later waves, with the primary purpose of measuring hormonal indices of adrenarche and gonadarche. DISCUSSION: CATS is uniquely placed to capture biological and phenotypic indices of the pubertal process from its earliest manifestations, together with anthropometric measures and assessment of child health and development. The cohort will provide rich detail of the development, lifestyle, external circumstances and health of children during the transition from childhood through to adolescence. Baseline associations between the hormonal measures and measures of mental health and behaviour will initially be examined cross-sectionally, and then in later waves longitudinally. CATS will make a unique contribution to the understanding of adrenarche and puberty in children's health and development.

Removal of foreign bodies from children's ears: a nurse-led clinic.

This article presents an account of the rationale for and the introduction of a change in practice. The successful removal of foreign bodies from children's ears requires appropriate skills and experience. While traditionally a role for junior doctors, removal of foreign bodies from children's ears at the ear, nose and throat outpatient clinic at Birmingham Children's Hospital was associated with a low success rate. Therefore, it was proposed that an experienced advanced nurse practitioner would carry out this task in an attempt to improve patient outcomes. A database of outcomes was maintained and compared with those from a doctor-led clinic at Nottingham University Hospitals NHS Trust. The results highlight the benefits of nurse-led removal of foreign bodies from children's ears.

The birmingham pediatric bone-anchored hearing aid program: a 15-year experience.

OBJECTIVE: To evaluate the complication rates and outcomes of children who were fitted with a bone-anchored hearing aid (BAHA) on the Birmingham BAHA program. STUDY DESIGN: Retrospective case analysis of clinical records of all children implanted at Birmingham Children's Hospital since the beginning of the program in 1992 until February 2007. PATIENTS: A total of 182 children younger than 16 years old fitted with a BAHA. Of these children, 107 had a significant medical history. RESULTS: Surgery was performed as a 2-stage procedure in 174 children. The healing time was between 3 and 4 months in 112 (64%) cases. Single-stage surgery was performed in 8 cases. Implant failures were 14% of 230 loaded fixtures (32 fixtures lost in total). Multiple-fixture failures (18 fixture failures) occurred in 7 patients. Adverse skin reactions appeared in 34 (17%) patients during a 15-year follow-up period. Revision surgery was undertaken in 14 (8%) cases because of skin overgrowth around the abutment. Five of these cases required multiple surgical skin reductions. CONCLUSION: The Birmingham Program has a high proportion of syndromic patients with complex medical problems. The fixture failure rate was found to be 14%. This included the multiple-fixture failures in children younger than 3 years old. There was 1 serious complication. The BAHA is a reliable and effective treatment for selected patients. Our program currently has 97% of its children wearing their BAHA on a daily basis with continuing audiologic benefit.