Calibrating logics: How adolescents and young adults calibrate often-competing logics in their daily self-management of type 1 diabetes.

Adolescents and young adults with type 1 diabetes must manage a demanding chronic condition in their daily lives, but adequate self-management remains a major challenge. In this article, we explore the logics invoked in shaping daily type 1 diabetes self-management among adolescents and young adults and propose an analytical view of self-management as a matter of 'calibrating logics'. Drawing on Annemarie Mol's concept of logic, our analysis of in-depth interviews with 21 adolescents and young adults with type 1 diabetes suggested that three main logics collectively shaped their self-management: biomedical, embodied and social. Biomedical logics appeared in the form of routinised insulin therapy, frequent blood glucose testing, and carbohydrate counting, all of which emphasise controlling blood glucose levels. Embodied logics emerged as refined practices such as 'thinking insulin units' and 'listening' to blood glucose fluctuations. Finally, social logics were at play when discreet or postponed self-management practices were used to adjust to social situations. While these logics may complement each other, study participants invoked how these logics often competed in daily life, generating tensions. We therefore propose viewing self-management as a matter of calibrating logics in which often-competing logics are at play. This can provide nuanced insights into the effort and challenges related to the daily self-management of type 1 diabetes for adolescents and young adults, in contrast to the prevailing dichotomy of adherence versus nonadherence to prescribed treatment regimens.

Development of an intravenous chemotherapy intervention for children and adolescents with cancer administered by their parents at home (INTACTatHome).

BACKGROUND: Families of children and adolescents with cancer strive to maintain routines and normalcy during the child's treatment trajectory that requires frequent hospital visits. Intravenous chemotherapy at home can reduce time spent on the frequent hospital visits and mitigate disruption in daily life. Studies on home chemotherapy for children and adolescents with cancer are limited, as is knowledge of family and health care professionals' needs, and knowledge required to inform adaptation or replication of interventions in other settings. The aim of this study was to develop and describe an evidence-based home chemotherapy intervention that is feasible and safe for children and adolescents and suitable for future feasibility testing. METHODS: The Medical Research Council's guidance for developing complex interventions in health care and the framework of action developed by O'Cathain et al. was used as theoretical frameworks to structure the development process. A literature search, an ethnographic study, and interviews with clinical nurse specialists from adult cancer departments formed the evidence base. Educational learning theory to support and understand the intervention was identified. Stakeholder perspectives were explored in workshops with health care professionals and parent-adolescent interviews. Reporting was qualified using the GUIDED checklist. RESULTS: A stepwise educational program to teach parents how to administer low-dose chemotherapy (Ara-C) to their child at home and a simple and safe administration procedure were developed. Key uncertainties were identified, including barriers and facilitators impacting future testing, evaluation, and implementation. Causal assumptions and reasoning for how the intervention leads to short-term outcomes and long-term impact were clarified in a logic model. CONCLUSIONS: The iterative and flexible framework allowed for integration of existing evidence and new data and was successfully applied to the development process. The detailed report on the development process of the home chemotherapy intervention can enhance adaptation or replication of the intervention to other settings and thereby mitigate family disruption and stress of frequent hospital visits for these treatments. The study has informed the next phase of the research project that aims to test the home chemotherapy intervention in a prospective single-arm feasibility study. TRIAL REGISTRATION: ClinicalTrials.gov ID: NCT05372536.

Ambiguous Expectations of Parent Caregiving for the Child and Adolescent With Cancer at the Hospital and at Home-An Ethnographic Study.

Background: Over the past three decades, complex care and treatment have increasingly become the responsibility of parents as home-based care providers, yet little is known about parents' caregiving experiences when considering the variety of care tasks. It is imperative to gain insight into the challenges parents face when managing treatment and care of their child with cancer to ensure optimal parental support and prior to further expansion of home-based parent caregiving. This study aimed to explore the experiences of children and adolescents with cancer, who had received treatment through a portable infusion pump, and their parents in managing different care tasks. It is the first study and forms the basis of the research project INTACTatHome, that develops and tests interventions of home-based intravenous anti-cancer treatment. Methods: Ethnographic fieldwork comprising participant observation and semi-structured interviewing analyzed using qualitative thematic analysis. Thirteen families participated in the study. Results: Three main themes were identified: (1) being a "mini-nurse"; (2) dividing care; and (3) managing anxiety and fear, each based on separate sub-themes. These themes were bound together by an overarching theme: "Ambiguous expectations of parent caregiving." Discussion: This study contributes to a deeper understanding of the varying experiences of children and adolescents and their parents in managing different care tasks for a child or adolescent with cancer. It underscores the need to establish clear expectations of parents as caregivers throughout the cancer treatment trajectory. This perspective is crucial when developing and implementing future home-based care services.

Surveillance life and the shaping of 'genetically at risk' chronicities in Denmark.

Today, in the field of hereditary colorectal cancer in Denmark, more than 40,000 identified healthy individuals with an increased risk of cancer are enrolled in a surveillance program aimed at preventing cancer from developing, with numbers still growing. What this group of healthy individuals has in common is lifelong regular interaction with a healthcare system that has traditionally been geared towards treating the acutely and chronically ill. In this article, we explore how people living with an inherited elevated risk of colorectal cancer orient themselves towards their families' and their own predispositions as well as the lifelong surveillance trajectories that they have embarked upon - what we call surveillance life. Unlike prior critiques of predictive genetic testing as generative of 'pre-patients' or 'pre-symptomatically ill', we suggest that for those enrolled in lifelong surveillance programmes in welfare state Denmark, the relevance of risk fluctuates according to certain moments in life, e.g. at family reunions, when a close relative falls ill, in the time leading up to a surveillance colonoscopy or when enduring the procedures themselves. As such, rather than characterising surveillance life in terms of 'living with chronic risk' we show how 'genetically at risk' chronicities take shape as persons come to terms with a disease that possibly awaits them leading them to recalibrate familial bonds and responsibilities while leading lives punctuated by regular medical check-ups.

Parent's perspectives of the pathway to diagnosis of childhood cancer: a matter of diagnostic triage.

BACKGROUND: Early diagnosis is crucial for the treatment of childhood cancer as it in some cases can prevent progression of disease and improve prognoses. However, childhood cancer can be difficult to diagnose and barriers to early diagnosis are multifactorial. New knowledge about factors influencing the pathway to diagnosis contribute to a deeper understanding of the mechanisms that influence this time span. Qualitative research in the field is sparse but can be expected to lead to additional useful insights that could contribute to efforts shorten time to diagnosis. The purpose of this study was to explore parents' experiences of the pathway to diagnosis in the time between their noticing bodily or behavioural changes and their child's diagnosis. METHODS: The study is a qualitative interview study carried out in large Danish hospital. Thirty-two interviews with a total of 46 parents of children with cancer were included for analysis. The children were diagnosed with haematological cancers (n = 17), solid tumours (n = 9) or brain tumours (n = 6). Data were analysed applying the theoretical model of pathways to treatment and an inductive-deductive approach. A revised 'diagnostic triage' model was developed and validated by member checking. RESULTS: The pathway to diagnosis was influenced by various factors which we present as consistent parts of a new diagnostic triage model. Each factor impacts the level of urgency assigned to bodily and behavioural changes by parents, general practitioners and specialists. The model of diagnostic triage was developed and validated to understand mechanisms influencing time from the point parents notice changes in their child to diagnosis. The model identifies dynamic movement between parental triage in everyday life and professional triage in a healthcare system, both affecting appraisal and case escalation according to: 1) the nature of bodily and behavioural changes, 2) parental intuition, 3) social relations, 4) professional-child-parent interaction, and 5) specialist-child-parent interaction. CONCLUSIONS: Diagnostic triage is a model which explains mechanisms that shape the pathway to diagnosis. It is a contribution aimed at supporting the clinical diagnostic process, that ultimately could ensure more timely testing, referral and diagnosis, and also a novel theoretical framework for future research on diagnostic pathways.

Everyday life challenges among adolescent and young adult survivors of childhood acute lymphoblastic leukemia: An in-depth qualitative study.

OBJECTIVE: As survival rates increase, growing numbers of childhood acute lymphoblastic leukemia (ALL) survivors are at risk for somatic and psychosocial late effects. Adolescent and young adult (AYA) survivors represent a distinct and vulnerable group. This study aimed to explore how AYA survivors of childhood ALL experience everyday life after cancer while adjusting to the potential impact of prior disease and treatment. METHODS: Semi-structured interviews were performed with survivors aged 15-22 years. Criterion-based homogenous purposive sampling was used to identify similarities within the group. Data were analyzed using an inductive, thematic approach. RESULTS: Data saturation occurred after 18 interviews. Identified themes included the post-chemo body, negotiating identities, and disruption. More than 80% reported physical or cognitive late effects, but survivors adapted to these and had a positive view on own health. However, a co-existing experience of frailty persisted. Social disruption during treatment had a negative impact on social relations even years following cure. Identity issues revolved around the paradox of seeking recognition for their cancer-related experiences, while also wanting to be treated like everyone else. Some participants aged 18-22 years experienced delayed reactions and a new, but unmet, need to process the past. CONCLUSIONS: AYA survivors of childhood ALL adapt well to their new life situations, but many experience ongoing cancer-related disruptions and experience not being fully understood. We suggest exploration and verbalization of these issues alongside somatic follow-up around the age of 16-18 years to support the AYA survivors during their transition into adulthood.

Germline whole genome sequencing in pediatric oncology in Denmark-Practitioner perspectives.

BACKGROUND: With the implementation of a research project providing whole genome sequencing (WGS) to all pediatric cancer patients in Denmark (2016-2019), we sought to investigate healthcare professionals' views on WGS as it was actively being implemented in pediatric oncology. METHODS: Semistructured interviews were carried out with pediatric oncologists, clinical geneticists, and research coordinating nurses (N = 17), followed by content analysis of transcribed interviews. Interviews were supplemented by ethnographic observations on Danish pediatric oncology wards. Additionally, questionnaires were distributed to healthcare professionals concerning when they found it appropriate to approach families regarding WGS. The response rate was 74%. RESULTS: Healthcare professionals see imbalances in doctor-patient relationship, especially the double role doctors have as clinicians and researchers. Some were concerned that it might not be possible to obtain meaningful informed consent from all families following diagnosis. Still, 94% of respondents found it acceptable to approach families during the first 4 weeks from the child's diagnosis. Views on the utility of WGS, treatment adaptation, and surveillance differed among interviewees. CONCLUSION: Overall, healthcare professionals see dilemmas arising from WGS in the pediatric oncology clinic, and some advocate for further educational sessions with families and healthcare professionals. Despite concerns, healthcare professionals overwhelmingly supported early approach of families regarding WGS. Interviewees disagree on the benefits of surveillance based on genetic findings.

Chronic Living in a Communicable World.

By April 2020, COVID-19 lockdowns had restricted the movements of over half the world's population. As health authorities advise people living with chronic conditions to self-isolate because they are at particular risk of serious complications and death, the epidemiological split between communicable and noncommunicable disease is tenuous. We argue that much more is at stake for people living with (multiple) medical conditions than being "at risk" of infection of coronavirus. We emphasize the need to attend to the long-term effects of COVID-19, but also the importance of the continued care of people living with other lifelong medical conditions.

Traveling health-promoting infrastructures: A meta-ethnographic analysis.

In recent years, it has become increasingly important to understand the global circulation of healthcare innovations in nations' attempts to solve contemporary health challenges. This article is a systematic review and meta-ethnography-inspired analysis that explores the global circulation of health-related standards, protocols, procedures, and regulations, or what we term health-promoting infrastructures (HPIs). The notion of HPIs is defined as built networks that allow for the circulation of health expertise with the intention of promoting solutions that address global health problems. We conducted systematic searches in six relevant electronic databases and ended up with a set of 13 studies. The review shows that it takes arduous work to prepare and facilitate the travel of HPIs and to mold them into meaningful local forms. In conclusion, we argue that HPIs can helpfully be thought of as scripted forms, which are globally available in always sited efforts to address specific problems.

Chronic Paradoxes: A Systematic Review of Qualitative Family Perspectives on Living With Congenital Heart Defects.

There have been substantial advances in the diagnostics and treatment of congenital heart defects (CHDs) in recent decades, and this has improved survival significantly. Consequently, there is a growing interest in how CHDs affect the daily lives of children and youth. We examine life with CHDs as a particular kind of living from the perspectives of both children and youth with CHDs and their families through a systematic review of existing qualitative research. Based on a meta-ethnographic analysis of 20 articles (identified through PubMed, EMBASE, EBSCOhost, PSYCHinfo, Scopus, and Web of Science from January 7 to 12, 2016), we argue that living with CHDs is characterized by chronic paradoxes arising out of the transitions, normalities, and futures that families have to navigate.

Pediatric cancer families' participation in whole-genome sequencing research in Denmark: Parent perspectives.

With an impending introduction of genome sequencing into paediatric oncology to facilitate personalised medicine, this study examines parent perspectives on participating in whole genome sequencing (WGS) research in the difficult weeks following diagnosis. As an embedded part of Sequencing Tumor and Germline DNA-Implications and National Guidelines (STAGING), a project aiming to implement WGS of all newly diagnosed paediatric cancer patients in Denmark, a parent perspective study was conducted by a clinical geneticist and anthropologist to document pragmatic, social and ethical dilemmas. Following genetic counselling, systematic debriefings were held and the anthropologist carried out in-depth parent interviews (N = 30 parents to 15 patients). Parents were approached about STAGING 2-28 days after diagnosis. The majority of interviewed parents reported that an early approach had been feasible for them, a few found it too early. Participation was explained in terms of altruism and a desire to learn more about why their child had developed cancer. A number of parents openly disagreed about the amount of information they wanted reported back. Enrolment in WGS research around the time of diagnosis is feasible, however, flexibility from researchers is essential. Notwithstanding high participation rates and a tendency to choose full disclosure, caution as regards the consequences of participating in WGS research is warranted.

[Germ line mutations causing paediatric cancer predisposition syndromes are common in children and adolescents with cancer].

Germ line mutations causing paediatric cancer predisposition syndromes (PCPSs) are more common than previously anticipated and are now recognised as a significant contributor to the incidence of childhood cancer. Advances in and increased clinical application of next-generation sequencing technologies have led to a rise in paediatric patients undergoing whole genome sequencing (WGS). This review focuses on the potential syndromes/diagnoses, which WGS may reveal in patients with childhood cancers, and highlights the clinical and psychosocial impact of PCPSs.

Online Peer-to-Peer Communities in the Daily Lives of People With Chronic Illness: A Qualitative Systematic Review.

This qualitative systematic review investigated how individuals with chronic illness experience online peer-to-peer support and how their experiences influence daily life with illness. Selected studies were appraised by quality criteria focused upon research questions and study design, participant selection, methods of data collection, and methods of analysis. Four themes were identified: (a) illness-associated identity work, (b) social support and connectivity, (c) experiential knowledge sharing, and (d) collective voice and mobilization. Findings indicate that online peer-to-peer communities provide a supportive space for daily self-care related to chronic illness. Online communities provided a valued space to strengthen social ties and exchange knowledge that supported offline ties and patient-doctor relationships. Individuals used online communities to exchange experiential knowledge about everyday life with illness. This type of knowledge was perceived as extending far beyond medical care. Online communities were also used to mobilize and raise collective awareness about illness-specific concerns.

The birth and routinization of IVF in China.

How can it be that China, with its history of restrictive family planning policies, is today home to some of the world's largest IVF clinics, carrying out as many as 30,000 cycles annually? This article addresses how IVF was developed in China during the early 1980s, becoming routinized at the same time as one of the world's most comprehensive family planning programmes aimed at preventing birth was being rolled out. IVF was not merely imported into China; rather it was experimentally developed within China into a form suitable for its restrictive family planning regulations. As a result, IVF and other procedures of assisted reproductive technology have settled alongside contraception, sterilization and abortion as yet another technology of birth control.

The problem of complementary and alternative medicine use today: eyes half closed?

Commentators such as Goldacre, Dawkins, and Singh and Ernst are worried that the rise in complementary and alternative medicine (CAM) represents a flight from science propagated by enemies of reason. We outline what kind of problem CAM use is for these commentators, and find that users of CAM have been constituted as duped, ignorant, irrational, or immoral in explaining CAM use. However, this form of problematization can be described as a flight from social science. We explore CAM use in light of a rigorous and robust social scientific body of knowledge about how individuals engage with CAM. By pointing to the push and pull factors, CAM user's experiences of their body, and the problem of patient choice in CAM use, we summarize some of the key findings made by social scientists and show how they trouble many of the reasoned assumptions about CAM use.

From global bioethics to ethical governance of biomedical research collaborations.

One of the features of advanced life sciences research in recent years has been its internationalisation, with countries such as China and South Korea considered 'emerging biotech' locations. As a result, cross-continental collaborations are becoming common generating moves towards ethical and legal standardisation under the rubric of 'global bioethics'. Such a 'global', 'Western' or 'universal' bioethics has in turn been critiqued as an imposition upon resource-poor, non-Western or local medical settings. In this article, we propose that a different tack is necessary if we are to come to grips with the ethical challenges that inter-continental biomedical research collaborations generate. In particular we ask how national systems of ethical governance of life science research might cope with increasingly global research collaborations with a focus on Sino-European collaboration. We propose four 'spheres' - deliberation, regulation, oversight and interaction - as a helpful way to conceptualise national systems of ethical governance. Using a workshop-based mapping methodology (workshops held in Beijing, Shanghai, Changsha, Xian, Shenzen and London) we identified three specific ethical challenges arising from cross-continental research collaborations: (1) ambiguity as to which regulations are applicable; (2) lack of ethical review capacity not only among ethical review board members but also collaborating scientists; (3) already complex, researcher-research subject interaction is further complicated when many nationalities are involved.

A quackery with a difference-new medical pluralism and the problem of 'dangerous practitioners' in the United Kingdom.

The figure of the 'miracle cure'-peddling quack pretending spectacular properties for worthless tonics is iconic. From their 19th century traveling wagon shows to their 21st century Internet spam scams, hucksters and cranks have been consistently targeted by health authorities as a danger to public health. Yet, in this paper, I argue that this is only one form that the problem of 'quackery' has taken in the past two centuries or so in the United Kingdom. Just as Roy Porter showed how the mid-19th century professionalization of medicine gave rise to a 'quackery with a difference' as a whole range of new medical movements-homoeopathy, hydropathy, medical botany, mesmerism-actively denounced allopathic or modern medicine, I will suggest that the late 20th century birth of 'complementary and alternative medicine' (CAM) has resulted in yet another transformation in quackery. By examining the ways in which regulatory authorities in the UK have come to address what is invariably described as a 'growing interest in CAM', I will show how the problem of quackery today is increasingly located in an ethical field of practitioner competency, qualifications, conduct, responsibility and personal professional development, almost (but not quite) regardless of the form of therapy in question.

Bio-politics and the promotion of traditional herbal medicine in Vietnam.

It is often suggested that, in the past 50 years, Vietnam has experienced a traditional medicine 'revival' that can be traced back to late President Ho Chi Minh's 1955 appeal 'to study means of uniting the effects of oriental remedies with those of Europe'. In this article, I demonstrate how traditional herbal medicine came to be recruited as an important component of national efforts to promote the public health of urban and rural populations in Vietnam. Importantly, this has entailed a rejection of a colonial biopolitics that sought to marginalize 'quackery' in favour of a postcolonial bio-politics that aims to promote the 'appropriate' use of traditional herbal medicines. While the Vietnamese case bears many parallels to other countries in this respect, notably China, Vietnam's ancient history of medicine, postcolonial isolation and extensive health delivery network have resulted in a unique strategy that encourages rural populations to become self-sufficient in the herbal treatment of their most common illnesses.