Research exploring the needs of families of childhood cancer survivors is critical to improving the experiences of future families faced by this disease. However, there are numerous challenges in conducting research with this unique population, including a relatively high mortality rate. In recognition that research with cancer survivors is a relational activity, this article presents a series of cases of parents bereaved by childhood cancer who unintentionally received invitations to participate in survivorship research. We explore six ethical considerations, (...) and compare our experiences with that described previously. Our considerations include the sharing of confidential information with external parties to confirm past patients’ vital status and appropriate researcher responses to bereaved parents. The management of researchers’ emotional safety when working with illness populations and the fact that study invitations can elicit grief responses in non-bereaved families are discussed. To conclude, we argue for the benefits of inviting bereaved parents whose children died after treatment completion in survivorship research. Such parents’ early survivorship experiences will otherwise be systemically neglected. We argue that discussing complex cases can assist researchers to protect participants’ and researchers’ emotional well-being. We hope to contribute to the dearth of discussion about research operating procedures to address these issues. (shrink)

Objective: Losing the only child is considered as the most severe kind of bereavement. It can trigger intense grief symptoms along with loss of psychosocial resources, but meanwhile, it can also lead to posttraumatic growth (PTG). The current study aimed to examine (a) whether a curvilinear relationship exists between grief and PTG, and (b) the moderating role of resources-loss among Chinese bereaved parents who lost their only child (shidu parents). Methods: 199 shidu parents from five provinces (...) completed the assessment packet covering prolonged grief symptoms and PTG, as well as resource loss. Hierarchical regression analyses were computed to examine the curvilinear relationship and the moderating effect of interpersonal loss and socio-economic loss. Results: There was no significant curvilinear relationship between grief and PTG in shidu parents. Under the high levels of interpersonal loss, shidu parents’ PTG scores decreased as the severity of grief increased. However, the socio-economic loss did not show a significant moderating effect. Conclusion: The results of the current study did not show a significant curvilinear relationship between grief and PTG in shidu parents. High levels of grief coupled with high levels of interpersonal loss may interfere with their ability to achieve PTG. Therefore, evaluating degrees of interpersonal loss seems to be an important part of the treatment process when working with shidu parents. To facilitate their adaptation from a positive perspective, helping them maintain existing or develop new interpersonal relationships may be helpful. (shrink)

Bioethicists, medical professionals and lawyers who support Posthumous Assisted Reproduction as an ethical procedure in the case of the deceased’s spouse often oppose it in the case of the deceased’s parents. In addition, supporters of PAR usually rely on an individualistic version of liberalism, thus focusing on a personal rather than relational approach to autonomy. This article proposes an alternative and comprehensive theoretical framework for the practice of PAR, based on the concepts of solidarity and relational autonomy. By analyzing (...) empirical data on people’s attitudes towards PAR, we reveal an important distinction between the deceased’s wish and the deceased’s consent. In addition, we show that in the majority of cases individuals report that the well-being of their relatives is paramount once they are dead. This finding, as will be demonstrated in the article, is not fully in line with Tremellen and Savulescu’s position who allow PAR in the case of the deceased’s spouse but not in the case of his parents. We also suggest that a relational autonomy perspective can be used to evaluate the choices and actions of the deceased, and to justify the requests for PAR by his spouse or parents. Furthermore, the discussion leads us to analyze both Sandel’s account of solidarity and the more recent account of Prainsack and Buyx. We conclude that PAR can be considered as a solidarity-based practice, both at the familial and societal level, an aspect that should be given more emphasis in the discourse surrounding PAR. (shrink)

BackgroundA child’s death is the most stressful event and the most complex grief that families face. The process of psychological adaptation to the illness and death of a child is difficult due to a variety of emotional reactions. Parental grief had received the attention of researchers only in recent years when it became clear that this reality differs substantially from the general grief process.ObjectiveThis work aims to highlight the needs of bereaved parents; increase the specificity and effectiveness of (...) the therapeutic approach to prevent complications in the process of loss-making; and find the recurrent thematic nuclei in the development of bereavement present in a therapeutic group of parents who have lost their child to an onco-hematological disease.MethodBetween 2011 and 2016, five therapeutic groups for the grief elaboration were made. The sample included a total of 50 parents of children who died from cancer between the ages of 0 and 21 years.Content analysis was carried out as a qualitative analysis method. The SAS® Text Miner software was used to read, interpret, classify and integrate the data from numerous sources.ResultsThe development and consecutive interpretation of the 5 clusters have been carried out to analyze the related topics using the node “Topic Analysis” and requesting the subdivision into five topics. Four topics have been well defined. Clear topics are reducible to categories of emotional relief, tools, legacy, and unfinished business. The topic analysis provides interesting indications about the different interpretive journeys of the bereavement situation and offers ideas regarding the different types of social responses.ConclusionsAfter reviewing the existing bibliography, we have confirmed the lack of specific literature on the problem of grief in parents whose children have died from cancer. Much research has shown that parents who lose a child to cancer want support, and there are still few studies on the most effective interventions for this group. (shrink)

A fundamental tenet of hermeneutic phenomenology is that people seek to create meaning of their experience from the response sited within human consciousness. The focus of this study is on the world of the lived experience as it is interpreted by participants through memory and language as accessed by interviews in order to produce an understanding of the participants’ experience. Three participants were interviewed whose adult children had died as a result of an AIDS-related illness. The interviews were recorded and (...) transcribed, and interwoven analyses sought to illustrate the participants’ lived experience of the phenomenon. An attempt was made to understand how the various phenomena relating to parental bereavement were reflected by participants in the interviews. Common themes included reactions to the knowledge of the illness, the experience of being with their dying child, coping with the pain of the loss, and spiritual and existential concerns. There are references to how others judge their grieving behaviour. Issues of retribution and punishment are prominent and these appear to place a particular burden of sorrow on the grieving parent. The study provided insight into the lived experience of bereavement and the forging of new meaning structures that can accommodate the loss. (shrink)

IntroductionDrug-related deaths are a major public health challenge. Losing a child to a DRD can be a very stressful life event, which places parents at risk of mental and physical health problems. However, traumatic experiences like losing a child to DRD can paradoxically also lead to positive psychological changes. A mixed-method approach was used to understand the complexity of the phenomenon of post-traumatic growth experienced by parents following a DRD.MethodBy combining data from a survey and interviews, we explored (...) positive growth experiences among Norwegian parents. We conducted descriptive analyses of the sample’s demographic characteristics and mean scores for Post-traumatic Growth Inventory items. Hierarchical multiple regression was used to examine the influence of the ability to perform daily activities, self-efficacy, social support, and symptoms of prolonged grief on the outcome variable of post-traumatic growth. Reflexive thematic analysis was applied to analyze the qualitative data. Finally, we integrated the results of the survey and the interviews.ResultsFor items measuring post-traumatic growth, parents scored highest on the item “I discovered that I’m stronger than I thought I was” and lowest on the item “I am able to do better things with my life.” Self-efficacy and social support had a statistically significant relation with post-traumatic growth. Two themes were generated from the interviews: new perspectives on life and new paths in life. Even though the “New Possibilities” subscale had the lowest mean score for the PTGI-SF, new paths in life were important for many of the interviewed parents.DiscussionParents described traumatic stressors associated with having a child who uses narcotics and hence experienced positive changes even before losing their child. We argue that on an individual level, the consequences of spillover stigma, low self-efficacy, and intrusive rumination can hinder potential post-traumatic growth. On a group level, enhancing network support may increase post-traumatic growth experiences. Hence, parents who have experienced a DRD can benefit from help to activate their social networks and strengthen their self-efficacy. (shrink)

Absence of health, that is, sickness in Africa is viewed in personalistic terms. A disease is explained as effected by 'the active purposeful intervention of an agent, who may be human', non-human (a ghost, an ancestor, an 'evil spirit), or supernatural (a deity or other very powerful being)' (Foster). Illness is thus attributed to breaking of taboos, offending God and/ or ancestral spirits; witchcraft, sorcery, the evil eye, passion by an evil spirit and a curse from parents or from (...) an offended neighbour. In view of these personalistic theories of ill health, treatment is through ritual purification, exorcism or sacrifices. For an appropriate diagnosis and intervention, it is imperative to determine 'who' caused the illness and then 'why' it was caused, to which answers are offered through divination by a healer. This interpretive framework, is applicable to all types of sickness, facilitates co-existence of African traditional healing and biomedical treatment, that is, plurality of health seeking practices. The approach fails to offer a constructive approach and contradicts the biblical healing framework whereby one may not have explanatory causes to a situation of ill health. This article engaged the biblical concept of shalōm as a relevant constructive framework. The Hebrew concept of shalōm, though distinctly salvific, is inclusive of holistic and personalistic healing aspects. The concept encompasses constructive aspects of completeness, wholeness, health, peace, welfare, safety, soundness, tranquillity, prosperity, perfectness, fullness, rest, harmony and the absence of agitation or discord, which provides a useful holistic healing theological framework. It therefore provides a health and well-being framework that is relational, sensitive and applicable to healing patterns in Africa. Using the case study of the Abaluyia people of East Africa, this article discussed bereavement as a state that requires healing and how the biblical framework of shalōm could be applied in fostering bereavement healing. (shrink)

The unexpected death of a child is one of the most challenging losses as it fractures survivors’ sense of parenthood and other layers of identity. Given that not all the bereaved parents who have need for support respond well to available treatments and that many have little access to further intervention or follow-up over time, online interventions featuring therapeutic writing and peer support have strong potential. In this article we explore how a group of bereaved mothers experienced (...) the process of participating in an online course in therapeutic writing for the integration of grief. Our research questions were: How do parents who have lost a child experience being part of an online course in therapeutic writing? What are the perceived benefits and challenges of writing in processing their grief? We followed an existential phenomenological approach and analyzed fieldwork notes (n= 13), qualitative data from the application and assessment surveys (n= 35;n= 21), excerpts from the journals of some participants (n= 3), and email correspondence with some participants (n= 5). We categorized the results in three meaning units: (1) where does my story begin? The “both and” of their silent chaos; (2) standing on the middle line: a pregnancy that does not end; (3) closures and openings: “careful optimism” and the need for community support. Participants experienced writing as an opportunity for self-exploration regarding their identities and their emotional world, as well as a means to develop and strengthen a bond with their children. They also experienced a sense of belonging, validation, and acceptance in the online group in a way that helped them make sense of their suffering. Online writing courses could be of benefit for bereaved parents who are grieving the unexpected death of a child, but do not replace other interventions such as psychotherapy. In addition to trauma and attachment informed models of grief, identity informed models with a developmental focus might enhance the impact of both low-threshold community interventions and more intensive clinical ones. Further studies and theoretical development in the area are needed, addressing dialogical notions such as the multivoicedness of the self. (shrink)

This paper examines the ethicalproblems that arise when research is carriedout after autopsy on dead infants. It comparesthe right of parents against that of the publicinterest in matters of research on dead minors. The basis for the respect that is widelyaccorded to the body of a dead person isexamined and is shown to ground the parentalinterest. A discussion of the nature of thefamily suggests that `informed consent' is notthe best term to apply to the process ofparental consultation. Some reasons (...) areprovided against using this term in the contextin which bereaved parents are consulted aboutautopsy and research on their dead infants. Itis suggested that a term such as `authorize'might better apply to this situation. (shrink)

Faith healing deaths occur infrequently in Canada, but when they do they pose a considerable challenge for criminal justice. Similar to caregivers who absent-mindedly and fatally forget a child in a hot vehicle, faith healers do not intentionally harm their children. It can seem legally excessive and unjust to prosecute achingly bereaved parents. But unlike ‘hot-car’ deaths, faith healing parents are not absent minded in the deaths they cause. Rather, significant deliberation and strength of will is necessary (...) to treat their child’s ailment with faith alone. Two different Criminal Code provisions can be brought to bear upon these deaths, namely, s. 215 ‘Failing to provide the necessaries of life’ and s. 219 ‘Criminal negligence’. From a public, medical, and scientific perspective treating potentially fatal ailments with ‘faith’ and ‘prayer’ seems like reckless endangerment, giving apparent justification to the more serious criminal negligence charge. But, the fault element in the criminal negligence offence continues to be a vexing issue in Canadian jurisprudence. People accused of negligence-based offences are commonly held to the standard of what a reasonable person might predictably have done in similar circumstances. While it is unnecessary for the impartial trier of fact to conceive of faith healing as ‘reasonable’, it is an open question whether faith healers are sufficiently unreasonable to warrant serious criminal condemnation and possible incarceration when their course of action causes death. Is it justifiable to think of faith healers who cause death as criminally unreasonable? That is, do they depart markedly enough from the standard that criminal negligence is rightly attributed to them? Public attitudes toward religion, religious fundamentalism, and healthcare must be considered when trying to discern what a reasonable person does when treating an ailing child at risk of death. (shrink)

Purpose This study aims to explore the complexities of methodological, ethical and emotional challenges of studying sensitive and vulnerable communities online from the perspective of simultaneously being a researcher and a research subject. The point of departure for these explorations consists of the author’s past and ongoing studies of the role and use of a closed grief support group on Facebook for bereaved parents – a community of which the author is a member. The aim is not to (...) provide ready solutions for “how to do ethics,” but rather to contribute to the collective and ongoing work initiated by the Association of Internet Researchers, among others, and to recognize the necessity of ethical pluralism, cross-cultural awareness and an interdisciplinary approach. Design/methodology/approach This is an explorative study, drawing on an ethnographic case study. The case serves as a point of departure for discussing the complexities of methodological, ethical and emotional challenges of studying sensitive and vulnerable communities online from the perspective of simultaneously being a researcher and a research subject. Findings Being a researcher and a research subject rolled into one, as it were, presents both opportunities and challenges. To conduct responsible research from both these perspectives pose high demands on the researchers’ ethical as well as emotional capacities and responsibilities. Hopes and expectancies of the community under study might put the researcher into a dilemma, ethical aspects of anonymity and informed consent might have to be reconsidered as well as emotional challenges of engaging in and with sensitive research, all of which makes for a complex balancing act. Ethics and methods are inextricably intertwined, so are the emotional challenges of conducting sensitive research intermingled. Studying vulnerable individuals and closed communities online highlights the necessity for case and context sensitive research and for flexibility, adaptivity and mindfulness of the researcher. It also highlights the importance of discussing and questioning theoretical, methodological and ethical developments for studying everyday life practices online. Originality/value The challenges encountered in this case study contribute to the experientially grounded approach to research ethics emphasized in AoIR’s ethics guidelines. This case offers an opportunity to explore and discuss complex issues arising from the researcher’s insider position in a closed group devoted to the sensitive topic of supporting bereaved parents. Further, it highlights the necessity for research to be case and context sensitive as well as for the researcher and the research design to be flexible and adaptive. Research on vulnerable communities also heightens the demands of ethical responsibility of the researcher and the research process. (shrink)

BackgroundPerinatal bereavement is an event that greatly impacts the emotional, psychological, and psychosocial aspects of those who want to have a child.ObjectivesSince there are few studies on the psychological impact of the COVID-19 pandemic on couples grieving for perinatal loss, this research aimed to survey this experience.ParticipantsBetween 2020 and 2021, in Italian provinces highly affected by the COVID-19 pandemic, 21 parents participated: 16 mothers and 5 fathers, among which there were 4 couples.MethodsA mixed-method design was used through self-report questionnaires (...) and in-depth interviews. Accompanied by a sociodemographic form, the following questionnaires were administered: Prolonged Grief-13, the Parental Assessment of Paternal Affectivity, the Parental Assessment of Maternal Affectivity, the Dyadic Adjustment Scale short version, the Daily Spiritual Experiences Scale, and the Impact of Event Scale-Revised. The texts obtained through the in-depth interviews underwent thematic analysis.ResultsFifty per cent of participants suffered from Post-Traumatic Stress Disorders symptoms and 20% suffered from relational dyadic stress. Four areas of thematic prevalence emerged: psychological complexity of bereavement, the impact of the COVID-19, disenfranchisement vs. support, and spirituality and contact with the lost child. Participants interpreted their distress as related to inadequate access to healthcare services, and perceiving the pandemic restrictions to be responsible for less support and lower quality of care. Furthermore, they needed psychological help, and most of them were unable to access this service. Spirituality/religiosity did not help, while contact with the fetus and burial did.ConclusionIt is important to implement psychological services in obstetrics departments to offer adequate support, even in pandemic situations. (shrink)

Despite significant efforts to support those bereaved by intrauterine death, they remain susceptible to avoidable psychological harm such as disenfranchised grief, misplaced guilt, and emotional shock. This is in part because the words available to describe intrauterine death—“miscarriage,” “spontaneous abortion,” and “pregnancy loss”—are referentially ambiguous. Despite appearing to refer to one event, they can refer to two distinct events: the baby’s death and his preterm delivery. Disenfranchised grief increases when people understand “miscarriage” as the physical process of preterm delivery (...) alone, for this obscures the baby’s death and excludes non-gestational parents, such as the father. Additionally, focusing on the delivery reinforces the mistaken idea that a gestational mother bears responsibility for her baby’s death, increasing misplaced guilt. When these terms instead shift the focus to the baby’s intrauterine death rather than the preterm delivery, they can obscure the physically difficult and often traumatic experience women have when they deliver their dead children, leaving women shocked by preterm delivery’s physical reality. Given their outsized role in framing the bereaved’s experiences, and their duty to avoid harming their patients, healthcare practitioners in particular should take special care to discuss intrauterine death and preterm delivery appropriately with patients and their families. Changing language to describe intrauterine death and preterm delivery clearly and precisely helps mitigate disenfranchised grief, misplaced guilt, and shock, while also helping to reframe the social response to intrauterine death, making it more obvious why certain steps, such as allowing bereavement leave following an intrauterine death, promote healing. (shrink)

In this article, we develop a new approach to integrating philosophical phenomenology with qualitative research. The approach uses phenomenology’s concepts, namely existentials, rather than methods such as the epoché or reductions. We here introduce the approach to both philosophers and qualitative researchers, as we believe that these studies are best conducted through interdisciplinary collaboration. In section 1, we review the debate over phenomenology’s role in qualitative research and argue that qualitative theorists have not taken full advantage of what philosophical phenomenology (...) has to offer, thus motivating the need for new approaches. In section 2, we introduce our alternative approach, which we call Phenomenologically Grounded Qualitative Research (PGQR). Drawing parallels with phenomenology’s applications in the cognitive sciences, we explain how phenomenological grounding can be used to conceptually front-load a qualitative study, establishing an explicit focus on one or more structures of human existence, or of our being in the world. In section 3, we illustrate this approach with an example of a qualitative study carried out by one of the authors: a study of the existential impact of early parental bereavement. In section 4, we clarify the kind of knowledge that phenomenologically grounded studies generate and how it may be integrated with existing approaches. (shrink)

In this paper, I explore the phenomenon of a felt sense of the concrete other. Although the importance of this phenomenon is recognised in the contemporary discussion on intercorporeality, it has not been subjected to systematic phenomenological analysis. I argue that the felt sense of the other is an aspect of intercorporeal body memory in so far as it is a habituation to something like the concrete other’s expressive style. Because it is inherently a sensory phenomenon, I speak of an (...) embodied sensorium of the other. I illustrate the phenomenon through contrasting case-vignettes taken from research in early parental bereavement. Based on this, I identify five modalities that outline the fundamental contours of a sensorium and specify that in their intermodal and synesthetic concretion they account for the felt sense of the other. Finally, I argue that the existential importance of the phenomenon is rooted in the distributed nature of my sense of self and self-familiarity. To illustrate this, I draw parallels between the felt sense of the concrete other and the felt sense of home and suggest that though there are also distinct differences between the two phenomena, they are rooted in the same underlying existential need for feeling-at-home in the world. (shrink)

The reconstruction of meaning in the aftermath of sudden infant death syndrome (SIDS) is part of the grieving process but has to date been poorly understood. Earlier theorists including Freud, Bowlby and Kübler‐Ross provided a foundation for what occurs during this time using stage theories. More recent researchers, often using qualitative techniques, have provided a more complex and expanded view that enhances our knowledge of meaning reconstruction following infant loss. This overview of representative contemporary authors compares and contrasts them with (...) the longstanding models that are being supplanted within the emerging field of thanatology. Understanding parental reactions within this new framework can help healthcare professionals in dealing with those affected by SIDS and provide a more empathic and sensitive approach to individual differences. Parents’ own accounts of their post‐SIDS experience are consistent with these newer theories. Comprehending how parents cope and reconstruct their lives is an important element in providing appropriate psychological support services. (shrink)

The perinatal necropsy is an important investigation following fetal or neonatal loss. Legal requirements on registration decree that consent is needed before necropsy can proceed in some of these babies. However, there are ill-defined grey areas which are open to legal and ethical difficulties. This paper discusses the problems that can arise with consent for a necropsy in the perinatal period. Some of these problems are clearly legal or ethical but all can cause distress to parents at a time (...) of grief and bereavement. The issues may not be readily resolved but public debate and ad hominem decisions on each perinatal loss may help to alleviate the problems. (shrink)

The observed Taiwanese neonatal professionals' more conservative attitudes than their worldwide colleagues towards end-of-life (EOL) decision making may stem from cultural attitudes toward death in children and concerns about medicolegal liability. Healthcare practice is rooted in local culture and laws; however that should be adjusted to patients' best interests. Improving Taiwanese neonatal professionals' knowledge and competence in EOL care may minimize ethical dilemmas, allow appropriate EOL care decision making, avoid infants' suffering, and ease parents' bereavement grief.

Adolescents are often an overlooked clinical population. Among school-based practitioners, there is a natural inclination to focus the delivery of mental health services, assessment measures, and intervention plans on younger children, and there is a strong research base to support these programs. On the other hand, the waiting rooms of most practitioners in private practice are filled with young and middle-age adults, couples, or families with young children. Because most therapists do not specialize in working with teens, who might make (...) up only a small portion of their overall caseload, there is a need for high quality, easily implemented activities to help engage with adolescent clients.This book provides an overview of the principles of therapeutic storytelling, developmental issues of adolescents and young adulthood, and their strengths-based model, before moving into a series of chapters devoted to specific issues. Commonly encountered topics such as sexuality, parent & peer relationships, substance abuse, violence & gangs, bereavement, and cultural and religious issues are covered within the chapters. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 81-85 [Access article in PDF] "What's in the Box Then, Mum?"—Death, Disability, and Dogma Sheila Colman OVERHEARD IN AN EXCHANGE between a bereaved woman and her son outside the church just prior to a funeral service: "What's in the box, then?" "Daddy." The son is in his late 30s and has a learning disability. His mother had prepared him as well as (...) she could; his father had been ill for some time and was not expected to recover. Death, and the rituals surrounding it, had been explained and it was not the first family funeral he had attended.Trying to field such childlike questions is typical of living with a person with a learning disability; trying to find the right words is difficult enough without the added pressure of personal emotional distress.The generally accepted norm in life is that a child is parented within the home until adulthood and then independence is attained. Roles may well be reversed in later life in that the "child" may find responsibilities in caring for, and making decisions for, elderly parents. Few people can stop parenting when their offspring are fledged—even though it is at arms length and any advice may be ignored. Life with a child with a learning disability is unbalanced in this respect; as carers we do not lead lives considered to be normal because our children continue to be childlike for the rest of their, and our, lives. Some of us know that our sons and daughters do not have "apparently limitless potential... to develop skills and autonomy if only they are given the right help" (but try, as a parent or carer, saying that to a professional working in the field of learning disability!) and know that the best we can hope for is mature, rather than immature, dependence.No one tells parents of a learning disabled child—or any other, for that matter—what their responsibilities to that child are. Food, warmth, love, support, and so on are givens, but it takes a conscious effort to move a child toward adulthood when it involves changes in life, for example, moving away from the family home. The debate rages; is it letting go or getting rid of?We all delight in the pleasures our children experience in childhood; we know the magic has gone from the family Christmas once realisation dawns on the youngest child. If you consider that your son or daughter has been dealt a very poor hand in life, the temptation to prolong and promote that innocence is very tempting. It is much easier to prevaricate than to admit that life has its unpleasant sides; that failure and disappointment exist: my son was a great fan of Thomas the Tank engine videos until he was in his early teens, long after it was age appropriate. I passed them onto a younger child, having told him the videos were lost. The fall-out was spectacular [End Page 81] (but fortunately short lived!) and he eventually became very interested in Formula 1 motor racing. I had to push him to grow up.For all of us, the transition from childhood to adulthood is a process, not an event. Although I agree with the professionals that the child with a learning disability should be part of any discussions concerning his or her future, if that child does not have the intellectual capacity to make informed choices, someone else has to do it. That someone else is usually a parent, but is it a parent who is prepared to let go to help that person become an adult with his or her own life away from the family home, or is it a parent who has protected and coddled the child by promising they will never have to go?Lest you think I am a particularly hard, confrontational, and unfeeling mother, I would point out that I have almost 50 years of experience of living with learning disability in the immediate family; my son is 20 but my brother... (shrink)

Definition of the problem The eleventh version of the International Classification of Diseases (ICD-11), which became effective in 2022, has raised a number of issues associated with medical ethics. Arguments In this context the paper explores the normative view of grief as a disease. ICD-11 contains the new diagnosis of “prolonged grief disorder” with a definition that fails to aid its clear distinction from the normal course of grief. The article discusses the philosophical and ethical implications of this diagnosis and (...) explores the risks of medicalizing and pathologizing grief which may lead to an undermining of its value. Conclusions and further perspectives The paper’s specific focus is the particular case of parental grief. We show that pediatric palliative care counteracts many risk factors for difficult grief reactions and may therefore serve as a valuable instrument for their prevention. We propose in this context the concept of “advance bereavement planning” as a potentially beneficial extension of advance care planning and palliative care in general. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy, Psychiatry, & Psychology 10.1 (2003) 91-97 [Access article in PDF] The Ambiguities of "Meaning":A Commentary Hans S. Reinders "Death, Disability, and Dogma" by Jennifer Clegg and Richard Lansdall Welfare (2003) is a rich paper that presents an unexpected but interesting mixture of observations and perspectives on mourning, grief and bereavement in the lives of people with intellectual disabilities.In a number of ways, the notion of meaning is prominent (...) in the paper. The authors observe that recent literature on grief and bereavement because of loss of loved ones does not confirm the "stage theory of loss." Instead there is a "multiplicity of possible responses to bereavement," which is partly explained by the role of cultural diversity. Cultural diversity is particularly involved in the development of "meanings" about loss (2003, 69). However, looking into the literature on grief and bereavement among persons with intellectual disabilities, the authors found that literature "dogmatic" in that it sticks to the traditional theoretical framework of "grief work" (2003, 74). The authors offer an explanation for this "stuck discourse": The approach to grief and bereavement among people with intellectual disabilities is framed within the philosophy of normalization. This leads professionals to downplay limitations to the potential of their clients in ways that encourage the denial of disability. The meaning assigned to intellectual disabilities, this is to say, is primarily positive. This positive outlook promotes the "belief in the apparently limitless potential of the client group to develop skills and autonomy if only they are given the right help" (2003, 71). The authors read this promoting of positive meaning as a counter strategy: our culture in general does not seem to be convinced of a valued meaning of life for persons with intellectual disabilities. Therefore, the professional world of service systems adopts a strategy of "separitism" (2003, 77), which explains why approaches to phenomena like grief and bereavement are "stuck" with ideas that are inadequate. The professional community attending those with intellectual disabilities is too much a world on its own. There should be more interaction between generalists and specialists on the subject of grief and bereavement.So far the general argument of the paper. Because my own area of research is not in the fields of clinical psychology or psychiatry, it cannot be my task to comment on Clegg and Lansdall-Welfare's presentation of the research on grief and bereavement in these fields. Nonetheless, there are a few points in their review of the literature that I will briefly address, but only to prepare the way for the major topic of this commentary, which is the issue of meaning as it relates to intellectual disability.Intuitively, my sympathy would lie with social critics arguing for caution with regard to the [End Page 91] medicalization of mourning and grief (Clegg and Lansdall-Welfare 2003, 67-79). The loss of loved ones will oftentimes be a traumatic experience, but when it is, I tend to see the symptoms of distress following that experience as a sign of mental health, more than anything else. Losing a parent, sibling, or someone else who has been part of one's life, is not only missing the other person, it is missing a part of oneself. That being the case, it is only to be expected that, in some sense, life will never be again what it was. Replacing notions of recovery from a traumatic experience by notions of "adaptation and accommodation" (2003, 68) appears to me the more sensible approach.Therefore, I tend to be suspicious about notions such as "pathological grief." From a philosophical point of view, such a notion seems to betray a modernist conception of the human subject in control of its own action. Following that conception, human beings need to transform that which happens to them by means of their own action so that they have made it part of themselves. Being overcome with grief one is in an emotional state that as such is "pathological"—as Immanuel Kant had it—the main characteristic of which is its heteronomy. A person overcome by grief is controlled by passion instead... (shrink)

In lieu of an abstract, here is a brief excerpt of the content:How Few Words Can the Shortest Story Have?Amihud GileadOf the best shortest story, we have only tales. According to one of them, Ernest Hemingway was proud of being the author of a story written in merely six words: "For sale: baby shoes, never worn." He considered this as his best story.1 Interviewing Gary Paulsen, Lori Atkins Goodson heard another version:Probably the best writing ever done was by Hemingway and (...) several other writers—I think it was in North Africa. During a drunken discussion, somebody said that they should write the best and shortest story they could write. They all had stories. Hemingway came up with six words: "For sale: Baby shoes. Never used."... Isn't that great? That's all there is. Six words. There's a book, there's a movie, there's a short story, there's a poem—anything you want to do with those six words, you can do it. It's just amazing what you can do with your words.2I greatly prefer the first version to the second despite its musicality or semi-rhythm. The minor colon is better than the major full stop and the capital letters. The whole story is genuinely minor in tone, and its great power rests upon this tone. "Used" is much less evocative and more commercially practical than "worn." "Used" draws the attention to the shoes, whereas "worn" intimately relates to the dead baby. Yes indeed, these six words can initiate a book, a feature movie, and the like; yet, as you will see below, I prefer to think about a whole world centered around, or arising out of, Hemingway's six words. Whether his six-words story is the shortest ever written is quite a different question, which will not be discussed in this paper.A very short story may comprise more than six words, say, seventeen, [End Page 119] such as the following: "The last man on earth sat alone in a room. There was a knock on the door" ("Knock" by Fredric Brown).3Which of these two stories is the better? The shorter one, Hemingway's story in the first version. Why? Not only because there is not a single superfluous word or, even, a letter or punctuation mark; each word, each mark must be there, each is necessary for the story. Hemingway's six words create or initiate a whole story, actually a universe, of sorrow, bereavement, mourning, solitude, silence, untimely death, despair, loss, and tragedy.4 Thus, each word in this story gets the utmost meaningfulness or significance that a word may have. Hemingway's story shows us a tragic world of dread "in a handful of" six words, each of which is very simple. In contrast, although Brown's story bears a lot of tension and it is quite enigmatic (Who is knocking on the door? God, the Devil, an alien? Or is it simply a hallucination?), it conveys much less in seventeen words than do Hemingway's six. Brown's seventeen words do not create or reveal a world, let alone a universe. They create some tension, perhaps a thrill, possibly an enigma but not a world. There is certainly some puzzle that the reader may attempt to solve, but not much more.Even in this respect, Hemingway's story is more enigmatic: What is the purpose of the sale of this baby's shoes? Is there some hope that what cannot be used for the lost baby will be useful for another, living baby? Or is it the stinginess of the dead baby's parents or relatives? Or is it their poverty that forces them to sell even these little shoes? Or is it their wish not to possess these shoes any longer despite their great significance? Regarding this last possibility, it is more suitable to sell them than to throw them away. In any of these possibilities, the shoes have some value. And the enigma under discussion is certainly tragic in any of these possibilities.In contrast, Brown's story suggests merely a puzzle, not a tragic enigma. Such a puzzle may be found even in pulp fiction, not in fine writing, whereas... (shrink)

This paper examines the contemplative techniques that comprised wesley's method of spiritual transformation. By employing a psychoanalytic perspective that explains the pastoral effectiveness of the method, I claim that Wesley's view of spiritual growth was therapeutic and transformative as measured by contemporary clinical standards. Wesley's developmental model involved a series of spiritual phases each characterized by techniques and meditations that culminated in sanctification, a cognitive-emotional transformation marked by the eradication of sinful temptations and the perfection of altruism. Couched in a (...) theological idiom, the method helped individuals to work through conflicts created by the three main traumata of British middle class childhood: authoritarian parenting and unresolved bereavement grief. This paper argues that religious-cultural symbolism may promote transformations of archaic affect and neurotic conflict that progressively reshape these pre-reflective materials into complex existential insights and convictions. (shrink)

AIDSThe sudden appearance of a truly new disease is a wake-up call. A new global pandemic of an infectious agent, transmitted through sexual contact and blood, affecting alienated and/or deprived people and communities, infectious throughout, that causes a slowly progressive breakdown of defence against other infectious diseases, as well as causing dementia in some, and leads to a premature death, occurring in an era of extensive travel and rapid communication, is a veritable tocsin. These crude ingredients of AIDS as a (...) medical and social phenomenon, blended with the poignant personal histories revealed to clinical professionals, spiced — as if this were necessary — by the fear, the prejudice, the wild theorising and the voyeurism, have presented a substantial challenge to practical medical ethics.Familiar ethical debates have been reopened with new perspective and insight, others have been examined thoroughly for the first time. Building on the major developments in medical ethics over recent decades, AIDS has provided an opportunity, indeed a necessity, for its maturation. It continues to present new issues for debate, while those that were present from the outset continue to perplex us, as this issue of the journal should show. In teaching, AIDS offers a plethora of examples to illustrate most of the central tenets and tensions of medical ethics. As an exemplar, it has provided preparation and precedent for addressing some of the issues emerging from new challenges, such as screening for susceptibility to genetic disease.AJPBereavementThe word comes from the same germanic root as “to be robbed excessively”. Bereavement is an intensely personal and disorienting experience, to which people can react with denial, anger, guilt or depression, sometimes prolonged. In Western countries nowadays it is most commonly experienced in mid-life through the death of a parent, or in old age through that of a …. (shrink)

_Self-Reflection for the Opaque Mind_ attempts to solve a grave problem about critical self-reflection. Psychological studies indicate not just that we are bad at detecting our own "ego-threatening" thoughts; they also suggest that we are ignorant of even our ordinary thoughts. However, self-reflection presupposes an ability to know one’s own thoughts. So if ignorance is the norm, why attempt self-reflection? While admitting the psychological data, this book argues that we are infallible in a limited range of self-discerning judgments—that in some (...) cases, these judgments are self-fulfilling or self-verifying. Even so, infallibility does not imply indubitability, and the author does not wish to provide a "foundation" for empirical knowledge. The point is rather to explain how self-reflection as a rational activity is possible. The book will be of interest to scholars working on the issue of self-reflection across a wide range of disciplines, including philosophy, psychology, and cognitive science. (shrink)

In his article, “The Unified Brain-Based Determination of Death Conceptually Justifies Death Determination in DCDD and NRP Protocols,” James Bernat argues that Thoracoabdominal Normothermic Regiona...

« Réfléchir aux similarités entre des répertoires très éloignés dans le temps et l’espace permet parfois de repenser à nouveaux frais les oppositions catégorielles qui nous servent à appréhender les genres musicaux. C’est ce qu’avait fait Simha Arom dans un article sur les parentés inattendues entre polyphonies africaines et polyphonies médiévales. En décal(qu)ant ce rapprochement avec la musique techno née à Detroit dans les années 1980-1990, on propose de montrer que l’opposition entre musiques savantes, traditionnelles et populaires, opérante dans le (...) monde occidental depuis le début du xix e siècle, gagne à être enrichie par d’autres grilles d’analyse pour complexifier la cartographie des objets musicaux qui peuplent le monde de la musique aujourd’hui. ». (shrink)

This paper tackles an open problem posed by Åqvist. It is the problem of whether his dyadic deontic systemsEandFare complete with respect to their intended Hanssonian preference-based semantics. It is known that there are two different ways of interpreting what it means for a world to be best or top-ranked among alternatives. This can be understood as saying that it is optimal among them, or maximal among them. First, it is established that, under either the maximality rule or the optimality (...) rule,Eis sound and complete with respect to the class of all preference models, the class of those in which the betterness relation is reflexive, and the class of those in which it is total. Next, an analogous result is shown to hold forF. That is, it is established that, under either rule,Fis sound and complete with respect to the class of preference models in which the betterness relation is limited, the class of those in which it is limited and reflexive, and the class of those in which it is limited and total. (shrink)

Do you know who you are? If the question seems unclear, it might owe to the notion of ‘knowing-wh’ (knowing-who, knowing-what, knowing-when, etc.). Such knowledge contrasts with ‘knowing-that’, the more familiar topic of epistemologists. But these days, knowing-wh is receiving more attention than ever, and here we will survey three current debates on the nature of knowing-wh. These debates concern, respectively, (1) whether all knowing-wh is reducible to knowing-that (‘generalized intellectualism’), (2) whether all knowing-wh is relativized to a contrast proposition (...) (‘contrastivism about knowing-wh’), and (3) whether the context-sensitivity of knowing-wh is a semantic or purely pragmatic phenomenon (‘contextualism vs. invariantism about knowing-wh’). (shrink)

This article contributes to a specific discussion within the postphenomenological debate by identifying a set of characteristics that a human-technology relationship must possess to be considered as dominantly hermeneutic. After presenting the main features of human-technology relations as a continuum, an understanding widely accepted amongst postphenomenologists, this paper will attempt to explicitly demarcate the characteristics of a family of artifacts where the hermeneutic dimension is dominant. This task will be carried out by introducing the key notion of interface. Ultimately, we (...) present a series of conditions for including the artifact into the family of “hermeneutic interfaces.”. (shrink)

La VI Epistola platonica, ad una considerazione attenta, si rivela una lettera spuria, pervasa tutta di esotericità e di misticismo. Essa si ricollega al gruppo delle lettere pitagorizzanti dello pseudo-Platone.

The purpose of this article is to examine stakeholder identification and prioritization by managers using the power, legitimacy, and urgency framework of Mitchell et al. (Academy of Management Review 22, 853–886; 1997). We use a multi-method, comparative case study of two large-scale sporting event organizing committees, with a particular focus on interviews with managers at three hierarchical levels. We support the positive relationship between number of stakeholder attributes and perceived stakeholder salience. Managers’ hierarchical level and role have direct and moderating (...) effects on stakeholder identification and perceived salience. We also found that most stakeholders were definitive, dominant, or dormant types – the other five types were rare. Power has the most important effect on salience, followed by urgency and legitimacy. Based on our case study, we offer several ways to advance the theory of stakeholder identification and salience. (shrink)

Entry on the Stanford Encyclopedia of Philosophy. A summary of the literature on whether externalism about thought content precludes non-empirical knowledge of one's own thoughts.