"Look at You Having Fun With Your Markers in Here!": Child Life Specialists' Countering of Infantilizating Narratives in Adult Oncology.

Child life specialists are clinically trained and educated healthcare professionals who work in both healthcare environments and the community to address the needs of ill children and their families. However, child life specialists have previously reported potential for their role, responsibilities, and scope of practice to be misunderstood by their clinical colleagues. Using a narrative methodology, this paper presents the composite narrative of Diane, whose story encompasses the stories of the four child life specialists working in adult oncology environments in Ontario, Canada. Diane's narrative is a counter-story, which counters common assumptions, beliefs, and attitudes about child life specialists. Through spending significant time narrating the multitude of tasks that are encompassed within her scope of care, Diane reaffirms her identity as a valuable member of an interprofessional adult oncology team and counters infantilizing assumptions that she is merely a babysitter or child entertainer. Her story highlights how, while the introduction of child life specialists to adult healthcare environments is new, the work they do is of great benefit to families and their children. The lack of understanding from clinical colleagues of the role of child life specialists, however, hinders not only the development of relationships between colleagues, but also the care for these families.

Pediatric oncology caregiving as narrative repair: Restor(y)ing disrupted family biographies and damaged moral identities.

Drawing on Arthur Frank's conceptualization of narrative repair, we consider how pediatric oncology nurses restore and re-story the narratives of patients and families whose biographies have been thrown off course by the diagnosis and death of a child from cancer, as well as their own narratives as caregivers. Frank argued that when one's life story is shipwrecked by chronic or life-threatening illness, storytelling is way to reorient one's biography to a new ending, repairing the narrative wreckage created by the illness experience. In this critical narrative study with nine pediatric oncology nurses in Ontario, Canada, we highlight how, through physical, narrative, and moral proximity, nurses become entwined in their patients' and families' illness narratives, and how developing this narrative knowledge provides nurses with opportunities to steer families onto new terrain. As well, we examine how nurses re-story and repair their own identities as "good" caregivers in situations when they are prevented from acting on behalf of their pediatric cancer patients. These findings contribute to literature on illness narratives by considering narrative repair as a relational process enacted as part of pediatric oncology caregiving.

Magnetic-field-driven targeting of exosomes modulates immune and metabolic changes in dystrophic muscle.

Exosomes are promising therapeutics for tissue repair and regeneration to induce and guide appropriate immune responses in dystrophic pathologies. However, manipulating exosomes to control their biodistribution and targeting them in vivo to achieve adequate therapeutic benefits still poses a major challenge. Here we overcome this limitation by developing an externally controlled delivery system for primed annexin A1 myo-exosomes (Exomyo). Effective nanocarriers are realized by immobilizing the Exomyo onto ferromagnetic nanotubes to achieve controlled delivery and localization of Exomyo to skeletal muscles by systemic injection using an external magnetic field. Quantitative muscle-level analyses revealed that macrophages dominate the uptake of Exomyo from these ferromagnetic nanotubes in vivo to synergistically promote beneficial muscle responses in a murine animal model of Duchenne muscular dystrophy. Our findings provide insights into the development of exosome-based therapies for muscle diseases and, in general, highlight the formulation of effective functional nanocarriers aimed at optimizing exosome biodistribution.

Exploring the Gut Microbiota-Muscle Axis in Duchenne Muscular Dystrophy.

The gut microbiota plays a pivotal role in maintaining the dynamic balance of intestinal epithelial and immune cells, crucial for overall organ homeostasis. Dysfunctions in these intricate relationships can lead to inflammation and contribute to the pathogenesis of various diseases. Recent findings uncovered the existence of a gut-muscle axis, revealing how alterations in the gut microbiota can disrupt regulatory mechanisms in muscular and adipose tissues, triggering immune-mediated inflammation. In the context of Duchenne muscular dystrophy (DMD), alterations in intestinal permeability stand as a potential origin of molecules that could trigger muscle degeneration via various pathways. Metabolites produced by gut bacteria, or fragments of bacteria themselves, may have the ability to migrate from the gut into the bloodstream and ultimately infiltrate distant muscle tissues, exacerbating localized pathologies. These insights highlight alternative pathological pathways in DMD beyond the musculoskeletal system, paving the way for nutraceutical supplementation as a potential adjuvant therapy. Understanding the complex interplay between the gut microbiota, immune system, and muscular health offers new perspectives for therapeutic interventions beyond conventional approaches to efficiently counteract the multifaceted nature of DMD.

Advancing Biomarker Discovery and Therapeutic Targets in Duchenne Muscular Dystrophy: A Comprehensive Review.

Mounting evidence underscores the intricate interplay between the immune system and skeletal muscles in Duchenne muscular dystrophy (DMD), as well as during regular muscle regeneration. While immune cell infiltration into skeletal muscles stands out as a prominent feature in the disease pathophysiology, a myriad of secondary defects involving metabolic and inflammatory pathways persist, with the key players yet to be fully elucidated. Steroids, currently the sole effective therapy for delaying onset and symptom control, come with adverse side effects, limiting their widespread use. Preliminary evidence spotlighting the distinctive features of T cell profiling in DMD prompts the immuno-characterization of circulating cells. A molecular analysis of their transcriptome and secretome holds the promise of identifying a subpopulation of cells suitable as disease biomarkers. Furthermore, it provides a gateway to unraveling new pathological pathways and pinpointing potential therapeutic targets. Simultaneously, the last decade has witnessed the emergence of novel approaches. The development and equilibrium of both innate and adaptive immune systems are intricately linked to the gut microbiota. Modulating microbiota-derived metabolites could potentially exacerbate muscle damage through immune system activation. Concurrently, genome sequencing has conferred clinical utility for rare disease diagnosis since innovative methodologies have been deployed to interpret the functional consequences of genomic variations. Despite numerous genes falling short as clinical targets for MD, the exploration of Tdark genes holds promise for unearthing novel and uncharted therapeutic insights. In the quest to expedite the translation of fundamental knowledge into clinical applications, the identification of novel biomarkers and disease targets is paramount. This initiative not only advances our understanding but also paves the way for the design of innovative therapeutic strategies, contributing to enhanced care for individuals grappling with these incapacitating diseases.

Family physicians' moral distress when caring for patients experiencing social inequities: a critical narrative inquiry in primary care.

BACKGROUND: Family physicians (GPs) working with patients experiencing social inequities have witnessed patients' healthcare needs proliferate. Alongside increased workload demands fostered within current remuneration structures, this has generated concerning reports of family physician attrition and possible experiences of moral distress. AIM: To explore stories of moral distress shared by family physicians caring for patients experiencing health needs related to social inequities. DESIGN AND SETTING: A critical narrative inquiry, informed by the analytic lens of moral distress, conducted in Ontario, Canada. METHOD: Twenty family physicians were recruited through purposive and snowball sampling via word of mouth and email mailing lists relevant to addictions and mental health care. Physicians participated in two narrative interviews and had the opportunity to review the interview transcripts. RESULTS: Family physicians' accounts of moral distress were linked to policies governing physician remuneration, scope of practice, and the availability of social welfare programmes. These structural elements left physicians unable to get patients much needed support and resources. CONCLUSION: This study provides evidence that physicians experience moral distress when unable to offer crucial resources to improve the health of patients with complex social needs resulting from structural features of the Canadian health and social welfare system. Further research is needed to critically interrogate how health and social welfare systems around the world can be reformed to improve the health of patients and increase family physicians' professional quality of life, potentially improving retention.

"There's So Much More Support We Could Have Provided": Child Life Specialists' Stories of the Challenges Working in Adult Oncology.

A cancer diagnosis in patients who are parents of minor children is uniquely stressful for both parents and children. Children need developmentally appropriate information and support to help reduce their fears and worries. Child life specialists (CLSs) are health professionals who work in pediatric environments to support children and families with the stress and uncertainty of illnesses. Increasingly, CLSs have been called upon to support children of patients in adult clinical environments. Our objective was to elucidate CLS caregiving narratives related to working with children of adult cancer patients. We used narrative inquiry to interview four CLSs working in adult oncology. Canadian CLSs who have experience providing care for children and families affected by parental cancer were recruited via convenience sampling. We used narrative analysis methods that included multiple close reads of the data, generating narrative themes, and noting conflicts or tensions in the data. CLSs' caregiving stories often highlighted the complexities of working in an adult oncology environment. Their narratives included challenges in providing optimal care to the children, including family-level barriers (such as parental wishes to withhold information from their children) and systemic barriers (such as late referrals and limited options for bereavement support). CLS participants identified several challenges of working with families in adult oncology. The CLSs highlighted a desire for additional institutional support for children of adult oncology patients and for themselves working in these environments in order to achieve what they believed to be optimal care.

Set Up to Fail? Barriers Impeding Resident Communication Training in Neonatal Intensive Care Units.

PURPOSE: Learning to navigate difficult clinical conversations is an essential feature of residency training, yet much of this learning occurs "on the job," often without the formative, multisource feedback trainees need. To generate insight into how on-the-job training influences trainee performance, the perspectives of parents and health care providers (HCPs) who engaged in or observed difficult conversations with Neonatal Intensive Care Unit (NICU) trainees were explored. METHOD: The iterative data generation and analysis process was informed by constructivist grounded theory. Parents (n = 14) and HCPs (n = 10) from 2 Canadian NICUs were invited to participate in semistructured interviews informed by rich pictures-a visual elicitation technique useful for exploring complex phenomena like difficult conversations. Themes were identified using the constant comparative approach. The study was conducted between 2018 and 2021. RESULTS: According to participants, misalignment between parents' and trainees' communication styles, HCPs intervening to protect parents when trainee-led communication went awry, the absence of feedback, and a culture of sole physician responsibility for communication all conspired against trainees trying to develop communication competence in the NICU. Given beliefs that trainees' experiential learning should not trump parents' well-being, some physicians perceived the art of communication was best learned by observing experts. Sometimes, already limited opportunities for trainees to lead conversations were further constricted by perceptions that trainees lacked the interest and motivation to focus on so-called "soft" skills like communication during their training. CONCLUSIONS: Parents and NICU staff described that trainees face multiple barriers against learning to navigate difficult conversations that may set them up to fail. A deeper understanding of the layered challenges trainees face, and the hierarchies and sociocultural norms that interfere with teaching, may be the start of breaking down multiple barriers trainees and their clinician supervisors need to overcome to succeed.

How do perceptions of Covid-19 risk impact pregnancy-related health decisions? A convergent parallel mixed-methods study protocol.

INTRODUCTION: Pregnant people have a higher risk of severe COVID-19 disease. They have been disproportionately impacted by COVID-19 infection control policies, which exacerbated conditions resulting in intimate partner violence, healthcare access, and mental health distress. This project examines the impact of accumulated individual health decisions and describes how perinatal care and health outcomes changed during the COVID-19 pandemic. OBJECTIVES: Quantitative strand: Describe differences between 2019, 2021, and 2022 birth groups related to maternal vaccination, perinatal care, and mental health care. Examine the differential impacts on racialized and low-income pregnant people.Qualitative strand: Understand how pregnant people's perceptions of COVID-19 risk influenced their decision-making about vaccination, perinatal care, social support, and mental health. METHODS AND ANALYSIS: This is a Canadian convergent parallel mixed-methods study. The quantitative strand uses a retrospective cohort design to assess birth group differences in rates of Tdap and COVID-19 vaccination, gestational diabetes screening, length of post-partum hospital stay, and onset of depression, anxiety, and adjustment disorder, using administrative data from ICES, formerly the Institute for Clinical Evaluative Sciences (Ontario) and PopulationData BC (PopData) (British Columbia). Differences by socioeconomic and ethnocultural status will also be examined. The qualitative strand employs qualitative description to interview people who gave birth between May 2020- December 2021 about their COVID-19 risk perception and health decision-making process. Data integration will occur during design and interpretation. ETHICS AND DISSEMINATION: This study received ethical approval from McMaster University and the University of British Columbia. Findings will be disseminated via manuscripts, presentations, and patient-facing infographics. TRIAL REGISTRATION: Registration: Clinicaltrials.gov registration number: NCT05663762.

How medical learners and educators decide what counts as mistreatment: A qualitative study.

INTRODUCTION: The mistreatment or abuse (maltreatment) of medical learners by their peers and supervisors has been documented globally for decades, and there is significant research about the prevalence, sequelae and strategies for intervention. However, there is evidence that learners experience maltreatment as being less clear cut than do researchers, educators and administrators. This definitional ambiguity creates problems for understanding and addressing this issue. The objective of this study was to understand how medical learners and educators make sense of less-than-ideal interactions in the clinical learning environment, and to describe which factors influenced their perception that the encounter constituted maltreatment. METHODS: Using constructivist grounded theory, we interviewed 16 medical students, 15 residents or fellows, and 18 educators associated with a single medical school (n = 49). Data collection began with the most junior learners, iterating with analysis as we progressed through the project. Constant comparative analysis was used to gather and compare stories of 'definitely', 'maybe' and 'definitely not' maltreatment across a variety of axes including experience level, clinical setting and type of interaction. RESULTS: Our data show that learners and educators have difficulty classifying their experiences of negative interpersonal interaction, except in the most severe and concrete cases. While there was tremendous variation in the way they categorised similar experiences, there was consistency in the elements drawn upon to make sense of those experiences. Participants interpreted negative interpersonal interactions on an individual basis by considering factors related to the interaction, initiator and recipient. CONCLUSIONS: Only the most negative behaviour is consistently understood as maltreatment; a complex process of individual sense-making is required to determine the acceptability of each interaction. The differences between how individuals judge these interactions highlight an opportunity for administrative, research and faculty development intervention.

"I can't be the nurse I want to be": Counter-stories of moral distress in nurses' narratives of pediatric oncology caregiving.

As a term used in nursing and other health professions to describe when one is prevented by institutional constraints from pursuing the right course of action, moral distress has gained traction to examine the effects of restructuring on health and social care providers. Using a critical narrative methodology, this paper presents the counter-stories of nine pediatric oncology nurses in Ontario, Canada, whose stories illustrate the embeddedness of their caregiving and moral distress within institutional contexts that leave them stretched thin amongst multiple caregiving and administrative demands, and that limit their capacities to be the nurses they want to be. Informed by feminist philosophical theorizations of moral distress, we elucidate how the nurses' counter-stories: (i) re-locate the sources of their moral distress within institutional constraints that fracture their moral identities and moral relationships, and (ii) dis-locate dominant narratives of technological cure by ascribing value and meaning to the relational care through which they sustain moral responsibilities with patients and their families. By making visible the relational care that they find meaningful and that brings them in proximity to patients and families, these counter-stories assist nurses in restoring their damaged moral identities. This study demonstrates the power of identifying and mobilizing counter-stories in tracing and critically examining the conditions that structure nurses' experiences of moral distress. The findings add theoretical and empirical depth to contemporary understandings of moral distress and complement ongoing public discussion of burnout among nurses and other health care workers during the COVID-19 pandemic. These counter-narratives may act as resources for resistance among nurses, help to reduce the distance between management and health care workers, and catalyze changes in policy and practice so that nurses, and the full scope of their caregiving, are valued.

Drawing on experience: exploring the pedagogical possibilities of using rich pictures in health professions education.

In both clinical and health professions education research, rich pictures, or participant-generated drawings of complex phenomena, are gaining recognition as a useful method for exploring multifaceted and emotional topics in medicine. For instance, two recent studies used rich pictures to augment semi-structured interviews exploring trainees', health care professionals' (HCPs), and parents' experiences of difficult conversations in the Neonatal Intensive Care Unit (NICU)-an environment in which communication is often challenging, anxiety-provoking, and emotionally distressing. In both studies, participants were invited to draw a picture depicting how they experienced a difficult conversation in this setting. As part of the interview process, participants were asked to both describe how they engaged with rich pictures, and to share their perceptions about the affordances and limitations of this research method. Here, their perspectives are reported and the possibilities of using rich pictures to inform pedagogical innovations in health professions education and research are considered.

Translating developmental origins of health and disease in practice: health care providers' perspectives.

Currently, there is limited knowledge on how health care providers perceive and understand the Developmental Origins of Health and Disease (DOHaD), which may impact how they inform patients and their families throughout the perinatal period. This qualitative descriptive study explored if and how health care providers counsel on in utero programming and future health outcomes with parents, both preconception and during pregnancy. One-on-one, semi-structured interviews were conducted with 23 health care providers from varying health disciplines including obstetrics and gynaecology, midwifery, paediatrics, endocrinology and internal medicine. Audiotaped interviews were transcribed verbatim and analysed using inductive thematic analysis. Three themes were identified: Knowledge about DOHaD, Counselling on DOHaD in Practice Settings and Impact of DOHaD on Health. Health care providers not only expressed excitement over the potential health benefits of DOHaD counselling but also indicated barriers to knowledge translation, including a lack of knowledge among providers and a disconnect between basic scientists and practitioners. All health care providers expressed concerns on how and when to introduce the concept of DOHaD when counselling patients and called for the development of practice guidelines. Counselling on DOHaD needs to be framed in a way that is empowering, minimising the potential of coercion and guilt. More interaction and collaboration are needed between health care providers and researchers to identify strategies to support knowledge translation generated from DOHaD research into practice settings.

"There Is No Before Cancer There Is Only Cancer." Perceived Late Effects of Pediatric Cancer on Survivors.

BACKGROUND: Although "late effects" connotes experiencing effects later in life, they can emerge immediately after active treatment. The effects that survivors experience have been reported but rarely from the point of view of the survivors regarding their life after treatment. OBJECTIVE: To examine the perceived late effects of pediatric cancer on survivors and their self-identified primary support persons in order to understand the multifaceted nature of living after a pediatric cancer diagnosis. METHODS: Using a pragmatic interpretive phenomenology approach, 10 survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) participated, completing background questionnaires and semistructured, one-on-one interviews. Interview transcripts were analyzed thematically. RESULTS: Both survivors and support persons acknowledged that survivors experienced negative physical and cognitive health outcomes that require follow-up care. Survivors acknowledged that their cancer experience and residual effects have changed the trajectory of their lives. CONCLUSIONS: Research on young adult survivors of pediatric cancer and the residual/late effects and emotional outcomes they experience is warranted. Longitudinal research can aid in understanding how effects develop or worsen over time. IMPLICATIONS FOR PRACTICE: The findings of this study support The Children's Oncology Group Long-term Follow-up Guidelines for practitioners. As the frontline caring for these individuals and families, nurses' involvement in transitional care out of treatment is necessary. Continued involvement and understanding of long-term pediatric cancer survivorship for nurses are also imperative for continuity for survivors and families.

Having a Sibling with ASD: Perspectives of Siblings and Their Parents.

The overall purpose of this research was to explore the experiences of families living with a child with autism spectrum disorder (ASD). This paper reports the experiences of siblings of children with ASD, from the perspective of both siblings and parents. Using a phenomenological case study design, participants completed face sheets to provide context for one-on-one, semi-structured interviews, which were transcribed verbatim, and verified via member checks. Van Manen's (1990) selective approach was used for data analysis. Siblings and parents described that the children with ASD made their siblings the targets of their aggression, and siblings spent less time with parents the children with ASD required more attention. It was also acknowledged that the siblings were more mature as a result of having a sibling with ASD. Families acknowledged that the relationship between children with ASD and their siblings would not differ if their children did not have ASD. This work highlights the importance of examining the family as a unit to provide a multifaceted perspective of how having a child with ASD affects their siblings.

Taking Lemons and Making Lemonade: Posttraumatic Growth From Pediatric Cancer.

PURPOSE: The purpose of this study was to examine the lived experiences of the perceived long-term effects of pediatric cancer on adult survivors and whether these effects had bearing on their primary support persons. DESIGN: This work was guided by van Manen's "new" interpretive phenomenology. METHODS: Ten survivors of pediatric cancer (aged 21-28 years) and 9 of their support persons (aged 23-73 years) were recruited. Background questionnaires were administered, and interviews were conducted. Field notes were collected, and member checks were administered for data credibility. RESULTS: A total of 4 themes emerged from this work; however, only the theme discussing posttraumatic growth will be discussed. Posttraumatic growth manifested in different ways, such as motivation for career or schooling choices, doing charity work, working with cancer organizations, or mentoring children undergoing pediatric cancer treatment. CONCLUSIONS: This work may provide comfort to other individuals with pediatric cancer knowing that they are not alone in their journeys. Healthcare providers should attempt to make pediatric cancer experiences as "normal" as possible for patients and their families and observe for signs of stress in their patients. As well, it is important for the pediatric cancer literature to illustrate that young adult survivors of pediatric cancer find positive outcomes in their experiences.

The Balancing Act: Mothers' Experiences of Providing Care to Their Children With Cancer.

The effect of pediatric cancer and its treatment are overwhelming-these effects are multifaceted and felt by the entire family unit throughout the diagnosis and treatment process. Children experience a plethora of effects as a result of the treatment process; however, it is imperative to remember that a pediatric cancer diagnosis affects parents physically, emotionally, and psychologically as well. While much of the pediatric cancer treatment occurs at the hospital or in clinics, parents are often faced with additional caregiving responsibilities at home, and in many cases, it is mothers who provide care to their children, while also attempting to care for the siblings of their ill children. This secondary data analysis examines the caregiving responsibilities of mothers from Southern Ontario, Canada, during the time from diagnosis to after their children's pediatric cancer treatment. Three subthemes emerged from the overall theme of caregiving: (1) "We tried to do as much as we could outside of the clinic," (2) "I had to be there for everything," and (3) "Most of the time we relied on other people." Each will be discussed in turn. The findings from this work provides insight to health care professionals on how to create or improve the current supports and resources provided to caregivers of children with cancer.

Who is a survivor? Perceptions from individuals who experienced pediatric cancer and their primary support persons.

PURPOSE: The purpose of this research was to examine the lived experiences of individuals who had cancer as children, as well as lived experiences of their current primary support persons. METHODS: Based on van Manen's "new" interpretive phenomenology, interviews were conducted with ten pediatric cancer survivors and nine of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families. RESULTS: Four themes emerged from the data; however, only the topic of the use of the term "survivor" and identification with the term will be discussed. All participants in the study described their personal definition of the term survivor and what it meant to be a survivor. Additionally, all individuals in the study discussed the concept of being a survivor and if they would consider themselves, or their loved ones, to be "survivors." CONCLUSIONS: The results of this study provide health care professionals, family members, and individuals fundraising or advocating for cancer causes with insights on how the term survivor may be interpreted. This study may provide insight to individuals who had cancer as children, in showing that their personal perspective shapes their identity; although "survivor" is common cancer vernacular, individuals can choose not to identify with their illness experiences.

"It Changed Everything. And Not All in a Bad Way": Reflections of Pediatric Cancer Experiences.

Pediatric cancer, otherwise known as childhood cancer, is devastating to both children and their families. All individuals in a family are often physically, psychologically, and socially affected. Using the qualitative theoretical orientation of interpretive phenomenology, interviews were conducted with 10 pediatric cancer survivors and 9 of their support persons to gain a more holistic understanding of the pediatric cancer experiences of children and their families. A total of 4 themes emerged from the data, however only the past experiences of the survivors and their recollection of their pediatric journeys will be discussed. Survivors experienced a variety of negative effects during and after treatment, while their support persons explained the emotional upheaval they experienced while caring for their children. Further, all individuals recalled positive memories throughout their journeys. The results of this study provide health care professionals and school administrators with insight into how to manage the difficult transitions children with cancer face when returning to school after cancer diagnosis and/or treatment. As well, this study may allow others undergoing similar journeys to relate to the lived experiences of the participants in this work.