We use cookies to distinguish you from other users and to provide you with a better experience on our websites. Close this message to accept cookies or find out how to manage your cookie settings.
To save content items to your account,
please confirm that you agree to abide by our usage policies.
If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account.
Find out more about saving content to .
To save content items to your Kindle, first ensure no-reply@cambridge.org
is added to your Approved Personal Document E-mail List under your Personal Document Settings
on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part
of your Kindle email address below.
Find out more about saving to your Kindle.
Note you can select to save to either the @free.kindle.com or @kindle.com variations.
‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi.
‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.
Medulloblastoma is the most common pediatric malignant brain tumor. Approximately 29% of medulloblastoma patients experience postoperative posterior fossa syndrome (PFS) characterized by impairments in speech, motor, and mood. An interdisciplinary rehabilitation approach is associated with greater rehabilitation gains than a single discipline approach for brain injury patients with significant rehabilitation needs. However, literature regarding the feasibility and utility of this approach within a tertiary care pediatric hematology/oncology setting is lacking. The Acute Neurological Injury (ANI) service was developed to coordinate care for neurologically complex hematology/oncology patients receiving active cancer treatment, including those with PFS. ANI care coordination includes bimonthly interdisciplinary team meetings, interdisciplinary goal implementation for each patient, parent psychoeducation about applicable brain-behavior relationships (including PFS) at treatment initiation, neuropsychological assessment at transition times throughout treatment, cognitive remediation, and coordinated end of treatment transition planning. We gathered caregiver perspective on this approach within a tertiary care pediatric hematology/oncology setting.
Participants and Methods:
Parents of children and young adults (ages 4-20) with PFS after medulloblastoma resection who received coordinated care as part of the ANI program (n=20) were interviewed at least 4 months following completion of cancer treatment. 75% experienced postoperative mutism while the remainder experienced significantly decreased speech without mutism. All received cranial-spinal irradiation and focal boosts to tumor sites followed by chemotherapy per multi-institutional treatment protocol. Caregivers were interviewed regarding perceived feasibility and utility of ANI program components including parent psychoeducation, neuropsychological assessment, cognitive remediation, and interdisciplinary team coordination/goal setting, as well as parental supports. Yes/no responses were gathered as well as responses regarding the perceived utility of aspects of the interdisciplinary ANI program approach via a five-point Likert scale.
Results:
Surveys were completed by 66% of families contacted. Mean age at first contact with neuropsychology as part of the ANI program was 9.45 years (SD=4.4 years). Mean time between end of treatment and parent interview was 3.20 years (SD=2.01 years). Most parents reported that initial psychoeducation about PFS helped to decrease their concerns (81%) and increased their understanding of their child’s functioning in the context of PFS (88%). They reported benefit from neuropsychological assessment reports prior to initiating adjuvant treatment (92%), at end of treatment (90%), and one year following initiation of cancer treatment (100%), though they perceived less benefit from assessments intended to inform provider interventions during treatment (81% and 66%). Reports were shared most often with schools (75%), behavioral therapists (50%), physicians (50%), and rehabilitation specialists (25%). Parents indicated that the interdisciplinary ANI program approach was helpful (94%) and the coordinated interdisciplinary goal was beneficial (92%). Most parents favored the weekly frequency of cognitive remediation sessions (83%). Much interest was voiced in establishing a formal mentoring program to offer peer support by parents whose children have previously experienced PFS to those acutely managing a new PFS diagnosis (95%). Of note, all participants indicated that they would be willing to serve in a peer mentor role (100%).
Conclusions:
The interdisciplinary ANI program approach is feasible with perceived benefits to families managing new PFS and medulloblastoma diagnoses and receiving active cancer treatment.
With advances in care, an increasing number of individuals with single-ventricle CHD are surviving into adulthood. Partners of individuals with chronic illness have unique experiences and challenges. The goal of this pilot qualitative research study was to explore the lived experiences of partners of individuals with single-ventricle CHD.
Methods:
Partners of patients ≥18 years with single-ventricle CHD were recruited and participated in Experience Group sessions and 1:1 interviews. Experience Group sessions are lightly moderated groups that bring together individuals with similar circumstances to discuss their lived experiences, centreing them as the experts. Formal inductive qualitative coding was performed to identify salient themes.
Results:
Six partners of patients participated. Of these, four were males and four were married; all were partners of someone of the opposite sex. Themes identified included uncertainty about their partners’ future health and mortality, becoming a lay CHD specialist, balancing multiple roles, and providing positivity and optimism. Over time, they took on a role as advocates for their partners and as repositories of medical history to help navigate the health system. Despite the uncertainties, participants described championing positivity and optimism for the future.
Conclusions:
In this first-of-its-kind pilot study, partners of individuals with single-ventricle CHD expressed unique challenges and experiences in their lives. There is a tacit need to design strategies to help partners cope with those challenges. Further larger-scale research is required to better understand the experiences of this unique population.
Coronavirus Disease 2019 (COVID-19) instigated a flurry of clinical research activity. The unprecedented pace with which trials were launched left an early void in data standardization, limiting the potential for subsequent data pooling. To facilitate data standardization across emerging studies, the National Heart, Lung, and Blood Institute (NHLBI) charged two groups with harmonizing data collection, and these groups collaborated to create a concise set of COVID-19 Common Data Elements (CDEs) for clinical research.
Methods:
Our iterative approach followed three guiding principles: 1) draw from existing multi-center COVID-19 clinical trials as precedents, 2) incorporate existing data elements and data standards whenever possible, and 3) alignment to data standards that facilitate data sharing and regulatory submission. We also supported rapid implementation of the CDEs in NHLBI-funded studies and iteratively refined the CDEs based on feedback from those study teams
Results:
The NHLBI COVID-19 CDEs are publicly available and being used for current COVID-19 clinical trials. CDEs are organized into domains, and each data element is classified within a three-tiered prioritization system. The CDE manual is hosted publicly at https://nhlbi-connects.org/common_data_elements with an accompanying data dictionary and implementation guidance.
Conclusions:
The NHLBI COVID-19 CDEs are designed to aid data harmonization across studies to achieve the benefits of pooled analyses. We found that organizing CDE development around our three guiding principles focused our efforts and allowed us to adapt as COVID-19 knowledge advanced. As these CDEs continue to evolve, they could be generalized for use in other acute respiratory illnesses.
The African American population of Buffalo, New York experiences striking race-based health disparities due to adverse social determinants of health. A team of community leaders and university faculty determined that a community dialogue was needed to focus research and advocacy on the root causes of these disparities. In response, we organized the annual Igniting Hope conference series that has become the premier conference on health disparities in the region. The series, now supported by an R13 conference grant from NCATS, has been held four times (2018–2021) and has attracted community members, community leaders, university faculty, and trainees. The agenda includes talks by national leaders and breakout/working groups that led to a new state law that has reduced disproportionate traffic-ticketing and drivers' license suspensions in Black neighborhoods; mitigation of the disproportionate COVID-19 fatalities in Black communities; and the launching of a university-supported institute. We describe the key elements of success for a conference series designed by a community–university partnership to catalyze initiatives that are having an impact on social determinants of health in Buffalo.
The final chapter of the book returns to the earlier themes of enmeshment and irreducibility, drawing on the issues explored throughout the book to consider what an animal-centric account of LGBQTNB politics might look like. We suggest that such an account must start by acknowledging species privilege if we are to make any progress in decentering human centrism. What, then, does this mean for gender and sexuality, given these are resolutely human categories of difference? This chapter argues that all bodies are marked by differences that are hierarchised: This applies between humans, between humans and animals, and between humans and the world around us. How we think about the ways in which bodies are marked thus provides us with a means to think about responsibility and accountability for practices of marking. In other words, one person’s practice of marking as a form of liberation (i.e., with regard to gender and sexuality) might be another person’s form of violence.
In this chapter, we bring together a queer menagerie of LGBQTNB human lives, specifically in the form of a focus on veganism and animal rights, beauty influencers and ‘cruelty-free’ makeup, and the kink practice known as ‘pup play’. What unites this seemingly disparate group of topics is a focus on the consumption of animals as food for humans or as fodder for human fantasies, and the ways in which a consumerist logic provides a point of intersection between human and animal lives that is arguably oriented to the former, rather than the latter. Obviously, veganism, ‘cruelty-free’ makeup, and kink are not unique to LGBQTNB people. However, each of these three topics takes unique forms or play out in specific ways in the context of LGBQTNB people’s lives. In focusing on the specific forms that these three topics take in the context of LGBQTNB people’s lives, we are mindful in this chapter that whilst some of the practices that LGBQTNB people may engage in through their relationships with animals may take specific forms, they nonetheless sit in (and serve to reinforce) broader social contexts wherein anthropocentrism serves to centre human standpoints.
In this chapter, we problematise the simplistic assumption that change in regard to gender is made more tenable or positive for humans as a result of the continuity that animal companionship offers. Instead, we argue that animals are not passive recipients of human change. Rather, we suggest that animals are closely attuned to human change. In the context of gender transition, continuity is rendered far more complex than might be suggested by cisgenderist narratives circulating about transgender and non-binary people. Liberal accounts of gender transition suggest that ‘the person doesn’t change’. Yet animal responses to gender transition suggest that the person does change, even if the nature of the human–animal relationship remains constant. By considering human accounts of how animals engage with change in their lives, this chapter suggests that animal companions are active agents in the context of human gender transition, speaking to their own awareness of, and contribution to, human–animal relationships.
In this chapter, we adopt an intersectional approach to explore accounts of activism and resistance as they shape animal and LBQTNB human lives. In the first section of the chapter, we take up some of the specificities of LGBQTNB animal activism by examining how trans women and drag queens have both engaged in activism in regard to animal lives. In the second section of the chapter, we turn to consider how histories of the Pride Flag contain within them recourse to claims about ‘nature’, and how this sits somewhat uneasily alongside more recent calls for the Pride Flag to be updated to better reflect the intersectionality of LGBQTNB communities. Continuing with our theme of nature, we then conclude the second section by exploring accounts of Radical Faeries, groups of primarily white gay men who make recourse to claims about nature to authenticate ideas about a gay spirituality and sense of community. The final analytic section in this chapter focuses on appropriation, initially by examining the appropriation of First Nation narratives in accounts of the death of an animal, and then by exploring how animal and LGBQTNB human rights are claimed in the face of resistance from the religious right.
In this chapter, we adopt an intersectional approach to explore accounts of activism and resistance as they shape animal and LBQTNB human lives. In the first section of the chapter, we take up some of the specificities of LGBQTNB animal activism by examining how trans women and drag queens have both engaged in activism in regard to animal lives. In the second section of the chapter, we turn to consider how histories of the Pride Flag contain within them recourse to claims about ‘nature’, and how this sits somewhat uneasily alongside more recent calls for the Pride Flag to be updated to better reflect the intersectionality of LGBQTNB communities. Continuing with our theme of nature, we then conclude the second section by exploring accounts of Radical Faeries, groups of primarily white gay men who make recourse to claims about nature to authenticate ideas about a gay spirituality and sense of community. The final analytic section in this chapter focuses on appropriation, initially by examining the appropriation of First Nation narratives in accounts of the death of an animal, and then by exploring how animal and LGBQTNB human rights are claimed in the face of resistance from the religious right.
In this introductory chapter, we establish a theoretical framework for the book, drawing on the concept of 'queer entanglements' to argue for what a 'queer menagerie' might look like in terms of research, theory, and activism in regard to the intersections of gender, sexuality, and species. The chapter also provides definitions of the populations we focus on and outlines our reasons for our specific areas of focus. We also discuss our positionality as authors. In elaborating our theoretical framework, we focus on histories and presents of animal and LGBQTNB human lives, and we map out some potential ways of understanding why it would seem that such histories and presents take unique forms in the lives of LGBQTNB people and the animals they live with. We finish the chapter by outlining our two key concepts, ‘enmeshment’ and ‘irreducibility’, that help us to understand and represent the work of curating a queer menagerie. This introductory chapter concludes by providing an overview of the chapters included in this book.
In this chapter, we examine how women of diverse genders and sexualities speak about their relationships with animal companions. Drawing on an interview study, this chapter argues that for many women, loving relationships with animals highlight the tension between enmeshment and irreducibility. On the one hand, the women interviewed spoke about the genuine love and affection they experience with animal companions. This love was ‘more-than-human’, even if at the same time accounts of love were often framed in human terms. On the other hand, when speaking about the loss of an animal companion, the women interviewed acknowledged that the irreducibility of human and animal lives to one another meant that their grief was often not acknowledged. This chapter asks the question, then, of what it means to love an animal, knowing that humans are likely to outlive most domesticated animals and that the death of an animal is rarely seen as significant by other humans. How women of diverse genders and sexualities make sense of this question, this chapter argues, speaks to how being situated at the margins of intelligibility in terms of gender or sexuality affords women the space to think about the intelligibility or grievability of love for animal companions.
In this chapter, we problematise the simplistic assumption that change in regard to gender is made more tenable or positive for humans as a result of the continuity that animal companionship offers. Instead, we argue that animals are not passive recipients of human change. Rather, we suggest that animals are closely attuned to human change. In the context of gender transition, continuity is rendered far more complex than might be suggested by cisgenderist narratives circulating about transgender and non-binary people. Liberal accounts of gender transition suggest that ‘the person doesn’t change’. Yet animal responses to gender transition suggest that the person does change, even if the nature of the human–animal relationship remains constant. By considering human accounts of how animals engage with change in their lives, this chapter suggests that animal companions are active agents in the context of human gender transition, speaking to their own awareness of, and contribution to, human–animal relationships.