bluuebunny/crossref_metadata_2025 huggingface dataset:
Determinism, Predictions, and Probabilism
Authors: Dépelteau Francois
Published: August 2021

This chapter addresses determinism, which has been the predominant mode of perceiving the universe in modern sciences. The basic assumption is that any event is the effect of an external cause. Generally speaking, biological determinism focuses on the biological causes of events, whereas social sciences focus on the social causes. This mode of perceiving the social universe is typically associated with positivism and, more specifically, social naturalism — or the idea that there is no significant difference between social phenomena and natural phenomena. In this logic, it is assumed that social scientists can and should discover ‘social laws’ — or universal relations of causality between a social cause and a social effect. However, determinism in the social sciences has been criticized since its very beginning. In response to these critiques, many social scientists have adopted various forms of ‘soft’ determinism. The chapter then considers social predictions and probabilism.
Ethnography
Authors: Makaremi Chowra
Published: August 2021

This chapter highlights ethnography, which is a method developed in the practice of ethnology, a subdiscipline of anthropology dedicated to the study of peoples using a micro-analytical and comparative perspective. Ethnographic methods such as immersion and micro-analysis have influenced qualitative research in sociology since the rise of the Chicago school of sociology. However, it is only since the 1970s that anthropologists have started to apply their research methods to their own societies. A founding principle of ethnographic knowledge lies in the notion of alterity and the idea that being an outsider to a culture may bring specific insights and questions about dimensions of social life that are interiorized as ‘natural’ and obvious by those native to that culture. What opened the path to ethnographizing one’s own society was the understanding that this productive and scientific use of alterity was not related to some intrinsic qualities of the researchers or the people they study, but to the ability to develop an estranged gaze, even on one’s own social world.
Experiments
Authors: Bol Damien
Published: August 2021

This chapter discusses experiments. For decades, social scientists were convinced that experimentations were not for them. Consequently, the use of comparative analysis was recommended as a substitute. Yet, since 1990, experiments have become increasingly popular in the social sciences. Experiments have two important advantages compared to observational methods. First, they allow the researcher to clearly identify what the causal variable X is and the outcome Y. Second, with observational methods the precision of the estimates depends on the extent to which the researcher manages to control for the differences between the cases. When the researcher cannot entirely capture these differences, the estimates are likely to be inflated, underestimated, or simply wrong. The chapter then considers the ‘Neyman-Rubin potential-outcome framework’ and looks at the two broad types of experiments: experiments in the field (including survey experiments), and in the lab. It also addresses ethical experiments.
Focus Groups
Authors: Parker Andrew , Tritter Jonathan
Published: August 2021

This chapter looks at focus groups, which grew out of both a therapeutic and marketing tradition and have been utilized by social scientists for many years. Their format constitutes a type of interview technique where six to twelve people are brought together and encouraged to discuss specific topics for 60–90 minutes in order that underlying issues might be explored. Focus groups are often used to investigate areas about which relatively little is known, and they are premised on face-to-face interactions between participants rather than direct responses to questions. More recently they have been adapted to online settings, particularly for hard-to-reach populations. Focus groups are valuable because they capture and harness group interaction to prompt fuller and deeper discussion and the triggering of new ideas. But in order for these dynamics to develop, it is vital that people’s stories are not already well known to each other.
Formal Modelling
Authors: Duchesne Érick , Silve Arthur
Published: August 2021

This chapter focuses on formal modelling. A formal model is the mathematical exposition of reasoning. Its purpose is to formulate consistent and rigorously stated hypotheses, which often shed light on the causation of a particular social phenomenon. Often, in the social sciences, a formal model is valuable because it can accurately predict behaviour and describe an actual (although unobservable) causal mechanism. Thus, formal models also allow plenty of space for deductive reasoning. Whether they clarify hypotheses or describe a mechanism, the success of formal models remains a matter of debate. The chapter then presents a few examples of useful models and considers the most frequent criticisms of formal modelling in order to identify a series of good practices for its proper use.
Hermeneutics
Authors: Samson Mélanie
Published: August 2021

This chapter assesses hermeneutics, which can refer to an art, a methodological paradigm, or a philosophical movement. In its primary sense, hermeneutics is the art of interpreting texts correctly. Today, hermeneutic method is practised across the human sciences and applied to the study of all types of written texts, actions, and other meaningful material. The chapter then focuses on the relationship between hermeneutics and human sciences. It also examines hermeneutics as a methodological approach used in legal research and the practice of law. There are two broad notions of legal interpretation. According to the first — the prevailing and most traditional notion — the interpretation of the sources of law is knowledge-based; the interpreter’s task is to extract the pre-existing meaning of a legal text, as set out by its author. According to the second notion of legal interpretation, the activity involves the interpreter’s will. The interpreter’s task is to attribute meaning to a text, by choosing from several possible meanings.
Hypotheses
Authors: Broek Onna van den , Chalmers Adam William
Published: August 2021

This chapter addresses hypotheses. Empirical social scientific research often entails an interaction between observations and theory (a logical and precise speculation about an answer to a research question). In the application of deductive reasoning, a specific theory will inform a set of hypotheses that are then tested through empirical observations. Accordingly, hypotheses can be defined as ‘testable propositions entailed by the logic of the theory’. The chapter then details five basic principles to build a theory. Although critics have pointed out that these principles are unsuitable for the investigation of a small-Number of cases due to the reliance on random selection and generalization, it remains an important work in developing procedures for avoiding bias and making reliable inferences. The chapter also discusses the formulation of a good hypothesis.
L. Levels of Analysis
Authors: Caprioli Mauro , Dupuy Claire
Published: August 2021

This chapter studies levels of analysis. Research in the social sciences may be interested in subjects located at different levels of analysis. The level of analysis indicates the position at which social and political phenomena are analysed within a gradual order of abstraction or aggregation that is constructed analytically. Its definition and boundaries vary across social science disciplines. In general, the micro level refers to the individual level and focuses on citizens’ attitudes or politicians’ and diplomats’ behaviour. Analyses at the meso level focus on groups and organizations, like political parties, social movements, and public administrations. The macro level corresponds to structures that are national, social, economic, cultural, or institutional — for example, countries and national or supranational political regimes. The explanandum (what research aims to account for), the explanans (the explanations), the unit of analysis, and data collection can be located at different levels. The chapter then considers two main errors commonly associated with aggregation and levels of analysis: ecological and atomistic fallacies.
Observational Methods
Authors: Olsson Christian
Published: August 2021

This chapter assesses observational methods. What distinguishes observational methods, and particularly participant observation (PO), from other data-gathering methods is, among others, that it privileges direct observation over the use of instruments. This implies that the observation is likely to be holistic, in the sense of involving the five senses, rather than only one of the senses (typically sight). PO also privileges observation in real time over the retrospective observation of traces left by past activities (texts, pictures, filmed sequences). It allows one to observe discourses, practices, interactions, and context together rather than separately. It focuses on first-hand observation, as opposed to observation based on secondary sources (involving a mediator or third person). PO is sometimes accused of harbouring a naive belief in the scientific virtue of ‘gut feeling’.
Oral History and Life History
Authors: Pomarède Julien
Published: August 2021

This chapter explores oral history and life history, which can be defined as the methods used to analyse the way actors narrate their past experiences. In oral history, the material is collected by an external observer and is mainly used to focus on delimited past sequences. Life history involves an examination of self-written accounts, such as autobiographies (memoirs), letters, or diaries. It serves the biographical objective of reconstituting individual or collective trajectories. Oral and life history can, therefore, be useful for analysing typical trajectories (the story of a member of a larger group), extraordinary experiences (or ‘deviant cases‘), and actors’ knowledge (relevant to their professional situation). The chapter focuses on key epistemological issues regarding the challenges, opportunities, and limits of using oral and life history as a research method.
Process Tracing
Authors: Rietveld Jochem , Gürkan Seda
Published: August 2021

This chapter illustrates process-tracing (PT), which is a qualitative within-case data analysis technique used to identify causal relations. Although there are several distinct definitions of the PT method, scholars largely agree that the process-tracing method attempts to identify the intervening causal process (or the causal chain or causal mechanism) between an independent variable and the dependent variable. The PT method can be used for theory testing and theory-building. When it is applied to theory testing, a hypothetical causal mechanism is tested against empirical evidence. The research goal is to test whether a theorized mechanism is present in a given case, or whether the mechanism functions as expected in the selected case. When tracing is applied to theory-building, the goal is to identify causal processes for which there is no available prior theoretical hypothesis in the literature. Here, the aim of the research is to develop theory.
Qualitative Comparative Analysis
Authors: Kalomeni Kevin , Wagemann Claudius
Published: August 2021

This chapter examines qualitative comparative analysis (QCA), which strives to bridge the methodological rift between case study-based research and quantitative studies. QCA belongs to the broader family of configurational comparative methods (CCMs). From an analytical perspective, QCA can be distinguished from quantitative approaches. The emphasis shifts from covariance to the analysis of set relations. Being strongly tied to a profound theoretical and conceptual reasoning which is typical for comparison in general, the analysis of set relations is based on three steps: first, a score is attributed to a social phenomenon (representing either a dichotomous or a graded set membership), usually in relation to other phenomena. Second, necessary conditions are defined. Third, through the help of a truth table analysis, (combinations of) sufficient conditions are analysed.
Replication and Reproducibility
Authors: Schmidt Stefan
Published: August 2021

This chapter focuses on replication and reproducibility. A single observation cannot be trusted. Similarly, findings from a single experimental investigation may reflect some regularity but they may also be due to chance, artefacts, or misinterpretations. Therefore, it is necessary to repeat the respective research procedure in order to validate the observations from the first study. Such a repetition is called replication. It is a very basic methodological tool that serves to transform an observation into a piece of validated knowledge. An observation or relationship that is found repeatedly and is also found under various scope conditions fulfils the important scientific criteria of reproducibility. There are different types of replications. The most basic distinction is between a narrow-bounded notion of replication termed direct replication and a wider notion of replication termed conceptual replication.
Source Criticism
Authors: Morin Jean-Frédéric , Olsson Christian , Atikcan Ece Özlem
Published: August 2021

This chapter illustrates source criticism, which is a technical and intellectual method used to track down the itinerary of a source of information. It aims to identify the producer, determine its initial meaning, and establish its conformity as an authentic unaltered source that yields truthful information. The general aims of source criticism are now widely shared by all social science disciplines. Though interdisciplinary in nature, its treatment and implementation vary according to the fields and sources concerned. The use and application of criticism can differ considerably depending on whether a study relies directly on people, documents, or other potential evidence. Ultimately, source criticism provides scientific legitimacy and rigour in the social science disciplines, where the nature and diversity of levels of intermediation and interpretation in the observational and empirical process can often prove misleading.
V. Variables
Authors: Morin Jean-Frédéric , Olsson Christian , Atikcan Ece Özlem
Published: August 2021

This chapter explores variables, which are measurable representations. As such, they are located at the interface between theoretical constructs and empirical observations. Deductive research identifies variables by operationalizing abstract concepts, while inductive research typically constructs variables from the observation of units. Irrespective of whether the research is deductive and theory-driven or inductive and empirically driven, variables occupy a central position in research methodology. One of the key features of variables is that they vary across units; any variable can have at least two distinct values (also called attributes). The chapter distinguishes dependent and independent variables before introducing other types of variables and presenting different types of values. It also discusses the epistemological assumptions underlying the notion of variables.
Global Experience With Rotavirus Vaccines
Authors: Burke Rachel M , Tate Jacqueline E , Parashar Umesh D
Published: August 2021

Rotavirus is a major cause of severe pediatric diarrhea worldwide. In 2006, 2 live, oral rotavirus vaccines, Rotarix and RotaTeq, were licensed for use in infants and were rapidly adopted in many high- and middle-income settings where efficacy had been demonstrated in clinical trials. Following completion of successful trials in low-income settings, the World Health Organization (WHO) recommended rotavirus vaccination for all infants globally in 2009. In 2018, 2 new rotavirus vaccines, Rotasiil and Rotavac, were prequalified by WHO, expanding global availability. As of March 2021, rotavirus vaccines have been introduced nationally in 106 countries. Since, Rotavirus vaccines have demonstrated effectiveness against severe disease and mortality, even among age groups in eligible for vaccination. Cross-genotypic protection has been demonstrated, and the favorable benefit-risk profile of these vaccines continues to be confirmed. Ongoing research seeks to better understand reasons for the geographic disparities in effectiveness observed, in order to optimize vaccine strategies worldwide.
Engineering acetyl-CoA supply andERG9repression to enhance mevalonate production inSaccharomyces cerevisiae
Authors: Wegner Scott A , Chen Jhong-Min , Ip Samantha S , Zhang Yanfei , Dugar Deepak , Avalos José L
Published: August 2021

Mevalonate is a key precursor in isoprenoid biosynthesis and a promising commodity chemical. Although mevalonate is a native metabolite in Saccharomyces cerevisiae, its production is challenged by the relatively low flux toward acetyl-CoA in this yeast. In this study we explore different approaches to increase acetyl-CoA supply in S. cerevisiae to boost mevalonate production. Stable integration of a feedback-insensitive acetyl-CoA synthetase (Se-acsL641P) from Salmonella enterica and the mevalonate pathway from Enterococcus faecalis results in the production of 1,390 ± 10 mg/l of mevalonate from glucose. While bifid shunt enzymes failed to improve titers in high-producing strains, inhibition of squalene synthase (ERG9) results in a significant enhancement. Finally, increasing coenzyme A (CoA) biosynthesis by overexpression of pantothenate kinase (CAB1) and pantothenate supplementation further increased production to 3,830 ± 120 mg/l. Using strains that combine these strategies in lab-scale bioreactors results in the production of 13.3 ± 0.5 g/l, which is ∼360-fold higher than previously reported mevalonate titers in yeast. This study demonstrates the feasibility of engineering S. cerevisiae for high-level mevalonate production.
Hapax remains: Regularity of low-frequency words in authorial texts
Authors: Faltýnek Dan , Matlach Vladimír
Published: August 2021

This article highlights the usual overlook in the literature of regular occurrences of low-frequency words (hapax legomena) in specific authors’ texts. This overlook arises from a linguistic assumption of non-systematic and context-dependent low-frequency word occurrences in extensive texts, and from the tendency of SVM methods to mark low-frequency words as irrelevant compared to the more frequent lexicon (e.g. Boukhaled, M. A. and Ganascia, J.-G. (2015). Using function words for authorship attribution: bag-of-words vs. sequential rules. In The 11th International Workshop on Natural Language Processing and Cognitive Science, October 2014, Venice, Italy. de Gruyter, Natural Language Processing and Cognitive Science Proceedings 2014, pp. 115–122.). Many approaches to authorship attribution are based on the n most frequent ‘function words’, which (1) are grammatically essential, frequent, and therefore included in each text; (2) are not affected by the topic of the text; and (3) reflect the unintentional linguistic activity of the author (Binongo, J. N. G. (2003). Who wrote the 15th book of Oz? An application of multivariate analysis to authorship attribution. Chance, 16(2): 9–17). Hapax legomena meet these conditions as well, except frequency (Baayen, H., van Halteren, H., and Tweedie, F. (1996). Outside the cave of shadows: using syntactic annotation to enhance authorship attribution. Literary and Linguistic Computing, 11(3): 121–32). We test the hypothesis that hapax legomena may work for purposes of authorship attribution based on selecting only hapaxes from whole texts (or randomly selected tokens of hapaxes) while using a specific pre-processed input (eigendecomposition of a cosine distance matrix) to the SVM classifier. This method evaluated the attribution of texts from fourteen Czech authors (yielding ninety-one pairs in total) and Evert, S., Proisl, T., Jannidis, F. et al. (2017). Understanding and explaining Delta measures for authorship attribution. Digital Scholarship in the Humanities, 32(2): 4–16 data set, and proved itself a suitable tool for identifying authors of previously unknown texts. Our method identifies a sparse network of regular occurrences of low-frequency words in different authors’ texts.
Testing
Authors: Graham Kennedy Ashley
Published: August 2021

When evaluating a diagnostic test, the following three components must be considered: accuracy, clinical effectiveness, and extraclinical value. Doing this requires not only scientific inquiry but also philosophical analysis. Accuracy is best determined via a clinical trial that carefully controls for confounding factors. The clinical effectiveness of a diagnostic test, on the other hand, must be determined by evaluating the test in addition to any subsequent treatment and/or prevention measures. Finally, when evaluating a diagnostic test, one must consider more than just a patient’s measurable clinical outcome. At least in some cases, the epistemic benefits of an accurate diagnostic test can make it valuable to perform even when it does not directly influence the patient’s treatment or prognostic outcomes.
Institutional Issues
Authors: Gruenewald David A.
Published: August 2021

Residents with intact decision-making capacity who wish to hasten death by VSED while living in institutional long-term care (LTC) settings may encounter barriers to enacting this choice. LTC facility administrators and clinical staff must balance concerns about resident safety and moral objections to hastened death with support for resident rights and self-determination. Achieving this balance involves careful resident assessment and interdisciplinary care planning to identify and mitigate causes of suffering where possible, along with staff training regarding VSED and rigorous documentation of the care plan and interventions. Involvement of hospice may help to: (1) clarify resident goals; (2) ensure alignment between these goals and the care plan; and (3) support physical, psychosocial, and spiritual care before and during VSED. Resident-centered care planning is facilitated by using a checklist to ensure that all major issues are addressed in these complex LTC situations.
Clinical Issues
Authors: Quill Timothy E. , Schwarz Judith K.
Published: August 2021

All seriously ill persons should complete advance directives specifying indications for limiting future provision of food and fluids. AD’s for SED specify When oral intake is to be limited and What limitations are to be imposed. Two categories include: (1) withholding all assisted oral intake from a person who has lost decision-making capacity, and previously indicated her wish to not receive any assisted feeding, and (2) Comfort Feeding Only (CFO) which involves providing as much or as little food and fluid as the patient seems to desire. CFO has three subcategories: (a) “Self-feeding only”—limiting oral intake to what the patient is able to self-administer. (b) Both “self-feeding” and “caregiver assisted-feeding” in whatever amount the patient enjoys. (c) “Minimum Comfort Feeding Only” is a modification for those who had expressed a desire to SED but lost decisional capacity before implementation, but now seem to desire food or fluid.
Ethical Issues
Authors: Davis Dena S. , Menzel Paul T.
Published: August 2021

The implementation of advance directives to withhold food and water by mouth faces significantly more challenges than VSED by persons with decision-making capacity, though with sufficient care and attention, many of these can be resolved. Reduced awareness may leave the person with little understanding of her directive or no awareness at all. In severe dementia, is behavioral expression of a simple desire for food or drink a relevant change of mind about the directive, or by then does the person no longer have the capacity to make such a change? How relevant is the moral distress that caregivers and health care agents will often experience when implementing the person’s directive, or when they are unable to get it implemented? Patients in severe dementia also may be relatively content, with little pain and suffering—is the deterioration itself, without pain and suffering, a legitimate reason for implementing a VSED directive?
Legal Issues
Authors: Pope Thaddeus M.
Published: August 2021

This chapter analyzes a patient’s right to have food and drink withheld when they lack decision-making capacity. Authorization for this decision typically comes from the patient’s advance directive. Yet, because the relevant statutory language varies materially from jurisdiction to jurisdiction, so does the permissibility of stopping eating and drinking by advance directive. Individuals may be able to circumvent statutory obstacles by either (1) completing a non-statutory advance directive, or (2) completing an advance directive in a permissive state and having it recognized in their home state. Furthermore, even in permissive jurisdictions, there may be challenges in implementing the directive because some incapacitated individuals in late-stage dementia may make utterances or gestures that suggest they want food and water. Individuals may be able to resolve the contradiction between the wishes of their past self and their present self by including “Ulysses clause” language in their advance directives.
Why Reproductive Justice Matters to Reproductive Ethics
Authors: Gilliam Melissa , Roberts Dorothy
Published: August 2021

This chapter addresses the historical and current attempts by physicians and legislators to regulate the reproduction of Black, Latina, and Indigenous women, with a particular focus on Black women. It connects the contemporary language promoting long-acting reversible contraception for “risky” populations to past policies coercing Black, Latina, and Indigenous women to use contraception and undergo sterilization. At the same time, these efforts to regulate the reproduction of women of color coincide with a rising number of abortion restrictions and lack of access to abortion and safe motherhood, which affect women of color disproportionately. Black women bear a disproportionate burden of the staggering and rising maternal mortality rate in the United States. These topics are often omitted from discussions about reproductive ethics, and social justice is often neglected as a major ethical principle. Approaching the reproductive freedom of women of color from a reproductive justice perspective, therefore, offers an important way to expand our understanding of reproductive ethics.
Contemporary Challenges to Providing Confidential Reproductive Healthcare to Minors
Authors: Truehart Amber , Hasselbacher Lee , Chor Julie
Published: August 2021

Minors in most states have a legal right to consent for reproductive health services, including contraception, pregnancy care, sexually transmitted infection testing and treatment, and (to varying degrees) abortion care. The right to consent usually corresponds with a right to confidentiality, but clinicians struggle to ensure minor confidentiality. This chapter reviews contemporary policies and laws that impact consent and confidentiality for minors seeking reproductive healthcare services. The authors also provide context on the public health framework for laws pertaining to adolescent consent and confidentiality. In the third section, they explore ethical considerations regarding the provision of confidential reproductive healthcare to minors. Last, the authors explore how contemporary medical practice can undermine legal protections afforded to minors, specifically focusing on electronic medical records, electronic prescriptions, and insurance. The authors give providers practical advice on how to optimize minor patients’ access to needed services while maintaining a trusting patient–provider relationship.
Contraception and Abortion in the United States
Authors: Strauss David A.
Published: August 2021

This chapter provides the legal background for the issues discussed in subsequent chapters. The author discusses how US constitutional law treats the right to abortion and contraception. He describes the history of the law regulating abortion, the current state of the law, and what the most controversial issues have been. He describes some roads not taken and speculates about future developments. Finally, the author addresses the practical effects of these legal developments on the availability of abortion.
Who Are Your Patients, and What Happens When They Disagree?
Authors: Ross Heather E.
Published: August 2021

Third-party reproduction carries significant legal and ethical challenges. Although well-intentioned mutual desire typically guides parties entering a gestational surrogacy or egg donation arrangement, the potential for conflict cannot be avoided. Because the physician’s role includes treating both their patient (the intended parent/s) and the “third-party patient” (the egg donor or surrogate), the physician should be aware of potential conflicting desires about medical treatment (i.e., an intended parent may desire a triplet pregnancy, while the surrogate may prefer to reduce). Systematic bias should also be considered, as it may result in favoring one patient’s medical needs over the other. The laws in this area are unsettled and in many situations no definitive legal answers are available. Prior to engaging in third-party reproduction each patient should be fully informed of potential medical risks and consult with mental health professionals and independent lawyers to confirm agreement with respect to the arrangement.
Accessing Reproductive Technology in France
Authors: Brunet Laurence , Fournier Véronique
Published: August 2021

This chapter compares French and American approaches to assisted reproductive technologies (ART). These countries are a fascinating (and unexplored) mirror: the United States focuses on the individual, while France emphasizes the best interest of society as a whole. This results in an access to ART largely open in the United States, yet all costs are covered by patients, and an access strictly regulated by law in France (and quite restricted until recent changes), yet costs are fully financed. This chapter introduces readers to the legal framework of access to ART in France and its cultural foundations. It highlights the insistence on the “right to privacy” in the United States, a concept much less valued in France, and concludes with a discussion, using clinical cases, of the ethical issues underlying tensions between reproductive autonomy and public policymaking, which differ in both countries.
Professional Ethics in Obstetric Practice, Innovation, and Research
Authors: Chervenak Frank A. , McCullough Laurence B.
Published: August 2021

Obstetric clinical practice, innovation, and research should be guided by professional ethics in obstetrics. In this chapter, the authors distinguish professional medical ethics from medical ethics and bioethics. They set out an ethical framework for obstetrics based on the invention of professional medical ethics by two eighteenth-century physician-ethicists, John Gregory (1724–1773) and Thomas Percival (1740–1804). Professional ethics in obstetrics appeals to the ethical principles of beneficence and respect for autonomy and the ethical concept of the fetus as a patient. This framework is deployed to provide ethically justified, practical guidance about two ethical challenges in obstetric practice: the professionally responsible role of nondirective counseling of pregnant women about induced abortion and the professionally responsible role of directive counseling about planned home birth. This framework is also deployed to provide ethically justified, practical guidance about professionally responsible obstetric innovation and research for fetal benefit.
Ethical Issues in Academic Global Reproductive Health
Authors: Spector-Bagdady Kayte , Johnson Timothy R. B.
Published: August 2021

This chapter addresses the ethical issues relevant to all academics and academic institutions engaging in global health, with a focus on international experiences in women’s health. The ethical issues for educational and clinical program development, such as sustainability, mutual benefit, and transparency, are relatively new interests. The authors discuss the ethical issues involved with global health research, including funding, community involvement, and informed consent and institutional review boards and argue that sustainability, mutual benefit, and fiscal transparency should be part of formal agreements and memoranda of understanding between academic global health partners; exchanges of learners should be bilateral and equitable; funding should be sustainable and fairly distributed; transcultural and translational issues must be welcomed and valued; research must be ethically grounded because of fundamental disparities between universities in low- and high-income countries; and issues of governance and institutional autonomy must be considered as transnational university partnerships are developed.
Culture, spirituality, religion, and ritual
Authors: Brown Erica , Muckaden Mary Ann , Mndende Nokuzola
Published: August 2021

Culture, religion, and spiritual beliefs can profoundly affect the ways in which families cope with caring for a child living with a life-shortening illness. These patterns and belief systems may also impact how families navigate decisions and make sense of death and dying. People’s attitudes and beliefs affect the way in which they respond to others, particularly those whose views and lifestyles are different from their own. To be effective, caring professions need to be aware of their own social mores, prejudices, and worldview. Cultural sensitivity is required to comprehensively support a child and family especially at the end of life (EOL). The chapter starts by defining key concepts and then describes some common worldviews and religions with particular relevance to children’s palliative care and ends with an example from the traditional perspective from southern Africa.
Assessment of the child and family
Authors: Contro Nancy , Zimmerman Jane
Published: August 2021

The assessment of the child and family in paediatric palliative care is a blend of art and science. It is a continuous rather than finite process that if done well helps solidify the therapeutic relationship between the family and the provider. In this chapter we discuss both the components of assessment and the ways in which it lays the foundation for treatment. First, we examine the fundamentals of assessment and identify how various concepts apply through case discussion. Next we review and integrate data from a large-scale study that highlighted themes identified by families which they considered critical components of assessment and quality care.
Education and school
Authors: Boucher Sue
Published: August 2021

Every child has the right to an education. Children with life-limiting illnesses or conditions aspire to normality and will often express a strong desire to return to school or continue their education, despite probable limitations. This chapter looks at how education can be offered to children with a life-limiting diagnosis and suggests how mainstream schools can work collaboratively with the child and the family to integrate or reintegrate them into their school programme. Information is provided on ways in which the school can manage risks, protect the child, and play a pivotal role in the provision of holistic and ongoing support. It also considers the need for in-depth planning and training for school staff in order to achieve safe reintegration and what must be done to provide support to siblings, classmates, and educators while the child attends school and during bereavement, should the child die.
Bereavement
Authors: Portnoy Sara , Ives-Baine Lori
Published: August 2021

Most families do not expect to bury a child. Adults expect to die before their children, certainly before their grandchildren. Yet every year parents face the enormous grief of having their child die and many young people experience the death of their sibling. This chapter discusses the impact of a child’s death on families, adults, and children, and describes interventions, based on theory, that may help bereaved families. Although unimaginable, most children and their families will cope with the death of a close family member, especially if they can express their feelings and thoughts, if the family can talk about what is happening and about their memories of the deceased, and if they have the opportunity to meet others who have been bereaved.
Using medication in children’s palliative care
Authors: Gray Andy , Riddin Jane , Hain Richard
Published: August 2021

Using medication in children’s palliative care (CPC) is fraught with difficulties as a result of an insufficient evidence-base and a lack of child friendly formulations, however this cannot be a reason not to intervene and allow unnecessary suffering. A lack of access in some countries to even essential medicines such as opioids is an infringement of the rights of the child to pain relief and needs urgent redress. Often, the only reasonable option is to extrapolate from adult data and to proceed rationally on the basis of what the prescriber knows about the available drug, the individual child, and the likely effects of their disease. Alternative routes for administration of medicines in children who are no longer able to use the oral route, such as the trans- and sub-cutaneous and buccal route mean symptom control can be provided at home and until end of life.
Cardiorespiratory symptoms
Authors: Harrop Emily , Kirsch Roxanne
Published: August 2021

Cardiorespiratory symptoms are important in paediatric palliative care, affecting those with cancer as well as children with non-oncological life-limiting illnesses. Breathing is not only a vital function; it also often acts as a barometer of a person’s overall comfort. Breathlessness, often the end point of both cardiac and respiratory compromise, is invariably listed among the most distressing of symptoms. A multimodal approach to treating discomfort related to cardiorespiratory compromise, is essential, allowing for the physical, psychological, social, and spiritual dimensions of the symptoms. The range of possible treatments available continues to expand, encompassing everything from simple non-pharmacological measures to long-term mechanical support of respiratory or cardiac function. This chapter will outline a holistic approach to managing cardiorespiratory symptoms in the child, providing excellent palliative care, where improving quality of life is a primary focus.
Palliative care for children with communicable illnesses
Authors: Meiring Michelle , Arscott-Mills Tonya
Published: August 2021

Whilst non-communicable diseases provided the impetus for the development of children’s palliative care (CPC) in the developed world, it was a single communicable illness human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) that was the catalyst for the development of many CPC programmes in the developing world. Whilst considerable gains have been made in preventing and controlling paediatric AIDS globally, there is still benefit to an integrated palliative care approach to the care of these children and especially for those living in countries without access to anti-retrovirals. Furthermore, there are many other communicable diseases associated with significant health-related suffering in children that could benefit from palliative care. This chapter proposes grouping these diseases using the well-known Association for Children with Terminal Conditions (ACT) categorization and discusses examples of important communicable diseases in each category. The need for improved CPC as part of the humanitarian response to acute communicable disease outbreaks such as Ebola virus disease is also explored.
Perinatal palliative care
Authors: Laoire Áine Ni , Nuzum Daniel , O’Reilly Maeve , Twomey Marie , O’Donoghue Keelin , Devins Mary
Published: August 2021

Perinatal palliative care (PNPC) is a holistic multidisciplinary model of care for both baby and family in the event of a perinatal diagnosis of a life-limiting condition. It aims to provide optimal symptom control and end-of-life care to the baby as well as specialized support to families from diagnosis through to birth, death, and bereavement. This chapter aims to address the challenging clinical, ethical, and practical issues specific to perinatal palliative care. It describes antenatal life-limiting diagnoses, the role of anticipatory bereavement care, a palliative care approach to pregnancy, and outlines the complex planning and models of care required to optimally provide for the baby, mother, and family throughout. This chapter ultimately aims to provide management strategies to guide multidisciplinary teams (MDT) to deliver high-quality PNPC to the family as a whole.
Teamwork
Authors: Aldridge Jan , Carragher Pat
Published: August 2021

In this chapter we consider what is meant by a team and by team-working. We explore the issues that arise in teams in paediatric palliative care and some of the key challenges of team working. We look at ways of tackling these challenges, so teams develop and function in healthy and creative ways, and so members are able to recognize when there are difficulties and have ways to resolve them, irrespective of the particular composition of the team. Teams are often used to address these various aspects of care, as no one professional can cover all aspects, or meet the diverse range of needs of these children and their families.
On the need for a natural philosophy of psychedelics
Authors: Letheby Chris
Published: August 2021

‘On the need for a natural philosophy of psychedelics’ provides a brief overview of the history of psychedelics in science and psychiatry, and a detailed review of recent evidence for their therapeutic and transformative efficacy. The chapter reviews clinical trials showing that one or two controlled psychedelic experiences can durably reduce symptoms of anxiety, depression, and addiction, and can cause lasting psychological benefits in healthy subjects. The chapter also reviews evidence that these beneficial effects are mediated by the occurrence of ‘mystical-type’ experiences. This evidence gives rise to the Comforting Delusion Objection that is the central focus of the book. Existing responses involve (i) rejecting philosophical naturalism, or (ii) downplaying the importance of epistemic factors in the evaluation of psychiatric treatments. The chapter raises problems for both approaches, and outlines a new one: to show that the Objection fails even if naturalism is true and the epistemic status of psychedelic therapy is important.
The mechanisms of psychedelic therapy
Authors: Letheby Chris
Published: August 2021

‘The mechanisms of psychedelic therapy’ presents arguments against three theories of psychedelic therapy. The Molecular Neuroplasticity Theory ascribes therapeutic benefits to an experience-independent molecular mechanism. This theory is undermined by the correlation between ‘mystical-type experiences’ and beneficial outcomes, which suggests that genuinely psychological mechanisms are involved. The Metaphysical Belief Theory and the Metaphysical Alief Theory fare better on this count: both ascribe beneficial outcomes to the transcendent vision of a ‘Joyous Cosmology’ supposedly encountered in the mystical-type experience. However, these theories struggle to account for the fact that some patients satisfy psychometric criteria for a mystical-type experience without undergoing a non-naturalistic metaphysical hallucination. The psychometric criteria can also be satisfied by more naturalistic experiences of ego dissolution and connectedness. The conclusion is that psychedelics cause lasting benefits via some genuinely psychological factor that (i) correlates with the construct of a mystical-type experience, but (ii) is independent of non-naturalistic metaphysical ideations.
Mechanisms: Religion’s impact on mental health
Authors: Koenig Harold G.
Published: August 2021

This chapter examines the genetic, psychological, social, behavioural, environmental, individual-level, and biological pathways that may help explain the relationship between religion/spirituality (R/S) and mental health. I use spirituality interchangeably with religion, since my use of the term ‘religion’ goes far beyond institutional religion—that is, it includes individual beliefs, practices, and intrinsic commitments related to the Transcendent. No doubt, there are many different ways that R/S might influence mental health in either positive or negative ways. Not only are there likely to be many pathways of direct influence, but also indirect effects that may be difficult to appreciate unless a comprehensive approach is taken. First, I briefly review research on the relationship between R/S and mental health, and then, having established a relationship, attempt to explain it by the multiple pathways noted above.
Christianity and mental health
Authors: Gray Alison J. , Cook Christopher C.H.
Published: August 2021

This chapter summarizes the impact of the Christian faith on mental health and illness. It provides an overview of the history of the Christian church founded in the teachings of Jesus Christ, and the key beliefs and distinctions from other monotheistic religions. It considers the different beliefs and practices of the main Christian denominations: Catholic, Protestant, and Orthodox. The church has a long and ongoing history of involvement in health care, and churches are at their best healing communities offering community, prayer, and, rituals such as Baptism and the Eucharist. Prospective studies have found that elements of Christian faith and practice benefit those with psychotic disorders and depression, increase happiness and resilience, and decrease the risk of substance abuse or suicide. Although teaching that over-spiritualizes or discourages timely interaction with health care and consistent treatment concordance is sometimes harmful, the evidence suggests that Christianity is generally a positive influence on mental health.
Judaism
Authors: Belmaker Haim , Strous Rael , Lichtenberg Pesach
Published: August 2021

Judaism was the first monotheist religion and has about 18 million adherents in the world today. This review covers the historical development of biblical Israelite religion in the ancient land of Israel beginning 1000 BCE and how it gradually developed into the very different rabbinical Judaism that exists today. While most Jews today are secular participants in Western democratic liberal cultures, Orthodox, and especially ultra-orthodox Jews are a rapidly growing minority with special needs for culturally sensitive psychiatry acceptable to their religious lifestyle and observance to the commandments. The traditional Jewish beliefs in a future Messiah is also a component of some manic states and the differential diagnosis between ‘religiosity’ and mental illness can be important in psychiatric settings with orthodox Jewish patients.
African religions, spirituality, and mental health healing practices
Authors: Ayinde Olatunde , Ojagbemi Akin , Makanjuola Victor , Gureje Oye
Published: August 2021

Traditional African religions are diverse with each having its own rituals and symbolisms and often defining an ethnic and language group. Even though most subscribe to the notion of a supreme deity, a common feature of these religions is their polythetic philosophy in which there are many layers of deities and ancestral spirits. The African gods are not jealous, making religious fundamentalism alien to the adherents of traditional religions. African traditional healing practices, rooted in African religious beliefs, are commonly sought because they are thought to get at the root causes of illness and not just to provide relief from symptoms. In the face of globalization as well as pervasive influence of Western cultures, the Abrahamic religions of Christianity and Islam now jostle for dominance and for the sole occupation of the spiritual space. However, even when the average African subscribes to an Abrahamic faith, it is common for them to retain a world view steeped in traditional spirituality. An appreciation of this dualism is important when addressing the mental health condition of the African patient.