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Purpose: Adequate preoperative information is known to improve patient outcomes. We aimed to evaluate perioperative education for paediatric patients and families undergoing intestinal stoma formation. Methods: UK paediatric surgery centres were invited to recruit patients aged 6–16 years with a stoma in situ or reversed within the last 2 years. Patient and parent questionnaires were posted for potential participants. Results: Eighty-three patient/parent dyads returned questionnaires. Median age was 11.5 years (range 4.1–17.8), with 48% (n = 40) formed electively. Parents rated how well-informed they felt perioperatively out of 10 (0 poorly, 10 highly informed). Parents were better informed about surgical issues and stoma care than psychological and social impacts (7.45 vs 6.11; p < 0.0001). 54% reported surgical complications but significantly fewer patients listed these amongst the worst things about having a stoma (24.4%) when compared with psychosocial issues: distress from bag leaks (90.8%; p < 0.0001), self-consciousness (54.1%; p = 0.0001), and restricted activity (40.2%; p = 0.03). Conclusion: Parents felt well-informed for medical and practical aspects but less well-informed of psychological and lifestyle impacts of having a stoma. Surgical complications were less important to patients than the impact on daily life. Increased psychosocial information would enable families to be better prepared for life with a stoma. [ABSTRACT FROM AUTHOR]

Early pregnancy loss, defined as pregnancy loss prior to 20 weeks’ gestation, occurs in about one in five pregnancies. Although there has been research on women’s experiences of healthcare and social support following miscarriage, research into workplace support is relatively limited. In this study, we explored women’s experiences of returning to work following early pregnancy loss, drawing on data from semi-structured interviews with 13 Australian women. Thematic analysis generated three main themes: returning to work too soon, decisions about disclosure and the importance of a flexible workplace. Findings revealed that return to work can be a difficult process to navigate, with many reporting feeling pressured to return to work. While disclosure of their miscarriage enabled women to feel supported by their colleagues and connect to those with a similar experience, they often found disclosure challenging. Flexibility with leave, return-to-work arrangements and role adjustments were highly valued and helped women return to work. Findings revealed that workplace context and culture were important in the extent to which women felt supported by their workplace. This suggests that there may be a need for structural workplace changes to improve women's experiences of returning to work following early pregnancy loss. [ABSTRACT FROM AUTHOR]

The proliferation of assisted dying legislative reforms globally is a significant change in the social and medico‐legal landscape of end‐of‐life care. Understanding the impacts of these legislative reforms on family members who care for a dying person is vital, yet under‐theorised in research. In this article, drawing on semi‐structured interviews with 42 carers for a person who has sought assisted dying in Australia, and extending ideas of ontological choreography we explore the new and complex choreographies enacted by carers in their endeavour to arrange a ‘good death’ for the dying person. We find that desires to fulfil the dying person’s wishes are often accompanied by normative pressures, affective tensions and complexities in bereavement. Enacting assisted dying requires carers to perform a repertoire of highly‐staged practices. Yet, institutional obstacles and normative cultural scripts of dying can constrain carer assisted dying practices. Understanding the nuances of carers’ experiences and how they navigate this new end‐of‐life landscape, we argue, provides critical insights about how assisted dying legislation is producing new cultural touchpoints for caring at the end of life. Moreover, we show how emerging cultural scripts of assisted dying are impacting in the lives of these carers. [ABSTRACT FROM AUTHOR]

As the culture of silence that once surrounded cancer has gradually given way to greater public awareness, normative visions of what cancer survivorship should entail have proliferated. These visions emphasise positivity and perseverance in pursuit of cure. While these visions provide comfort to many, for people with metastatic cancer, the emphasis on cure can undermine their sense of belonging to the broader collective of people living with cancer. Drawing on semi‐structured interviews with 38 Australian women living with metastatic breast cancer, we explore how incurable cancer inflects understandings of self and transforms interpersonal relationships. Extending ideas around biosociality and belonging, we explore the tenuousness of social bonds, revealing how (in)visibility, (in)authenticity and (in)validation circulate within the daily lives of women with metastatic breast cancer. We conceptualise accounts according to four social bonds: (1) threatened bonds where a relationship is strained by misunderstanding, (2) severed bonds where a relationship is ruptured due to misunderstanding, (3) attuned bonds whereby a relationship is based on shared identification and (4) flexible social bonds when a relationship is based on mutual understanding. More broadly, we illustrate the persistence of normative visions of cancer survivorship and their enduring effects on those whom such visions exclude. [ABSTRACT FROM AUTHOR]

The article explores the potential extension of voluntary assisted dying (VAD) laws in Victoria, Australia to include people with dementia. It discusses the ethical, philosophical, and social questions raised by this extension, such as defining eligibility criteria and assessing suffering in individuals with impaired decision-making capacity. The article emphasizes the importance of maintaining the legitimacy and social consensus of the existing VAD framework and highlights the need for a balanced approach to avoid exacerbating social divisions. It suggests that a renewed social debate and a harmonized national legislative framework are necessary to address the challenges associated with VAD in dementia. [Extracted from the article]

AbstractLegislation in the United States has increasingly led to limitations on what and how educators are able to teach in the classroom. These measures, often deemed divisive concept laws, can lead to a host of challenges for music educators, impacting student/teacher relationships, repertoire selection, pedagogical practices, and student and teacher safety and mental health, among other concerns. Furthermore, constriction of content can frame the music educator as a deliverer of curriculum wherein the educator may feel stripped of their professional agency. The purpose of this study was to explore how, if at all, music educators from four states considering or actively enacting divisive concept laws achieved agency in their unique contexts. Data included semi-structured interviews with eight music educators. Findings suggest that stakeholders responded to policies in varying ways, the language of policies played a significant role in how policies were understood and enacted, and participants found divisive concept laws as particularly challenging in the midst of broader deprofessionalization of teaching. [ABSTRACT FROM AUTHOR]

Background: Thiopurine drugs are effective treatment options in inflammatory bowel disease and other conditions but discontinued in some patients due to toxicity., Methods: We investigated thiopurine-induced toxicity in a pediatric inflammatory bowel disease cohort by utilizing exome sequencing data across a panel of 46 genes, including TPMT and NUDT15., Results: The cohort included 487 patients with a median age of 13.1 years. Of the 396 patients exposed to thiopurines, myelosuppression was observed in 11%, gastroenterological intolerance in 11%, hepatotoxicity in 4.5%, pancreatitis in 1.8%, and "other" adverse effects in 2.8%. TPMT (thiopurine S-methyltransferase) enzyme activity was normal in 87.4%, intermediate 12.3%, and deficient in 0.2%; 26% of patients with intermediate activity developed toxicity to thiopurines. Routinely genotyped TPMT alleles associated with defective enzyme activity were identified in 28 (7%) patients: TPMT*3A in 4.5%, *3B in 1%, and *3C in 1.5%. Of these, only 6 (21%) patients developed toxic responses. Three rare TPMT alleles (*3D, *39, and *40) not assessed on routine genotyping were identified in 3 patients, who all developed toxic responses. The missense variant p.R139C (NUDT15*3 allele) was identified in 4 patients (azathioprine 1.6 mg/kg/d), but only 1 developed toxicity. One patient with an in-frame deletion variant p.G13del in NUDT15 developed myelosuppression at low doses. Per-gene deleteriousness score GenePy identified a significant association for toxicity in the AOX1 and DHFR genes., Conclusions: A significant association for toxicity was observed in the AOX1 and DHFR genes in individuals negative for the TPMT and NUDT15 variants. Patients harboring the NUDT15*3 allele, which is associated with myelosuppression, did not show an increased risk of toxicity., (© The Author(s) 2024. Published by Oxford University Press on behalf of Crohn’s & Colitis Foundation. All rights reserved. For commercial re-use, please contact reprints@oup.com for reprints and translation rights for reprints. All other permissions can be obtained through our RightsLink service via the Permissions link on the article page on our site—for further information please contact journals.permissions@oup.com.)