When our nearest and dearest experience medical crises, we may need to step into caregiving roles. But in doing so, we may find that our new caregiving relationship is actually in tension with the loving relationship that motivated us towards care. What we owe and are entitled to as friends, spouses, and family members, can be different from what we owe and are entitled to as caregivers. For this reason, caregiving carries with it the risk of a type of (...) moral distress that I call “role conflict distress.” Rather than view role conflict distress as a sign that we are falling short, I suggest that it actually speaks to the commitment that we have to the loving relationship that grounds our duty of care. (shrink)

Caregiving relationships are often characterized by an imbalance of power between the caregiver and her cared-for. The danger that this power will be abused is a source of serious moral concern. In this article, I argue that the risk of an abuse of power sometimes stems not from the possession of power itself, but from the very nature of caring relationships. This is because carers must be prepared to exercise non-minimal amounts of power over their cared-fors, even if doing so (...) is likely to cause the cared-for distress or even pain. This means that caring itself, rather than the malign influence of power dynamics, generates a risk of unintentional abuse. One of the ways in which this risk can be reduced, I argue, is by trying to avoid an exclusive focus on the outcomes of care, and by paying more attention to the way in which that care is delivered. (shrink)

Background: Dementia care at home often involves decisions in which the caregiver must weigh safety concerns with respect for autonomy. These dilemmas can lead to situations where caregivers provide care against the will of persons living with dementia, referred to as involuntary treatment. To prevent this, insight is needed into how family caregivers of persons living with dementia deal with care situations that can lead to involuntary treatment. Objective: To identify and describe family caregivers’ experiences regarding care (...) decisions for situations that can lead to involuntary treatment use in persons living with dementia at home. Research design: A qualitative descriptive interview design. Data were analysed using the Qualitative Analysis Guide of Leuven. Participants and research context: A total of 10 family caregivers providing care for 13 persons living with dementia participated in in-depth semi-structured interviews. Participants were recruited by registered nurses via purposive sampling. Ethical consideration: The study protocol was approved by the Ethics Committee of the University Hospitals Leuven and the Medical Ethical Test Committee Zuyderland. Findings: Family caregivers experience the decision-making process concerning care dilemmas that can lead to involuntary treatment as complicated, stressful and exhausting. Although they consider safety and autonomy as important values, they struggle with finding the right balance between them. Due to the progressive and unpredictable nature of dementia, they are constantly seeking solutions while they adapt to new situations. Family caregivers feel responsible and experience social pressure for the safety of persons living with dementia. They may be blamed if something adverse happens to the persons living with dementia, which increases an already stressful situation. Their experience is influenced by characteristics of the care triad such as practical and emotional support, knowledge, and previous experiences. Discussion and conclusion: To prevent involuntary treatment, professionals need to proactively inform family caregivers, and they need to support each other in dealing with complex care situations. (shrink)

Background:More and more adults in their fifties and sixties are confronted with the need to support their ageing parents. Although many aspects of filial caregiving have been researched, a well-documented and comprehensive overview of the caregiving experience is lacking.Aim:This study aims for a better understanding of the caregiving experience of adult children by generating an overview of main themes in international research.Method:A literature review of qualitative studies, focusing on the experiences of adult children caring for their ageing parents, was performed. (...) The electronic EBSCO databases Academic Search Premier, CINAHL and PsycINFO, and Google Scholar were searched to identify relevant qualitative studies published between 2000 and 2017. The ‘SPIDER’ eligibility criteria directed the approach. The quality of studies included was screened with the assessment sheet designed by Hawker and colleagues. The experiences reported were analysed and themes were synthesized.Ethical consideration:Ethical requirements were respected in every phase of the research process.Findings:Nineteen qualitative studies met the inclusion criteria. The quality of the relationship with the parent appears to be an important determinant of the children’s caregiving experience. Within this context, three themes were found: caregiving as an emotional rollercoaster, a normatively demanding experience and an opportunity for personal development.Discussion:Children caring for their ageing parents have to deal with a wide range of contradicting and conflicting norms and values. Implications for healthcare professionals and future research have been discussed.Conclusion:Caring for ageing parents is a continuous quest for giving the best possible care and living up to one’s personal values, within the context of the parent’s declining health. Professionals who support filial caregivers should address not only practical responsibilities but also the normative questions and moral considerations caregivers are dealing with. (shrink)

Researchers have documented negative physical and emotional consequences for both family caregivers of persons with cancer as well as caregivers of persons with a neurologic disorder. However, there is a unique subset of caregivers who must provide care for someone who may suffer from both a short, terminal trajectory of disease, as well as neurological and neuropsychiatric sequelae — the caregiver of a person with a primary malignant brain tumor. The purpose of this article was to describe (...) a conceptual framework for providing care for a person with a primary malignant brain tumor. The demands of this particular care situation are described, as well as potential resources available to the caregiver to meet those demands. Finally, the stress response that results from the balance between care demands and caregiver resources is illustrated. Development of a conceptual framework for this caregiving population is the first step in assisting nurses to identify factors that place caregivers of persons with a primary malignant brain tumor at risk for negative consequences, and to design interventions to improve caregiver health. (shrink)

Advance directives (ADs) have for some time been championed by ethicists and patient associations alike as a tool that people newly diagnosed with dementia, or prior to onset, may use to ensure that their future care and treatment are organized in accordance with their interests. The idea is that autonomous people, not yet neurologically affected by dementia, can design directives for their future care that caregivers are morally obligated to respect because they have been designed by autonomous individuals. In (...) this paper, we first criticize the idea that ADs can retain moral authority in severe dementia by arguing that it is paradoxical. Second, we consider two arguments that initially seem to refute this critique of ADs, but we eventually dismiss them. The first argument states that ADs retain moral authority in severe dementia because autonomously formed interests, for example, ADs, can only be appropriately discarded by autonomous persons. This we term the historical autonomy argument. We dismiss it by demonstrating how we, in analog cases, are not obligated to continue to respect autonomously formed interests even though they have been discarded under nonappropriate conditions. The second argument is that ADs can be justified by what we term external interests. While we agree that people with severe dementia plausible can be said to have external interests, we show that ADs cannot express such interests and hence cannot be justified by them. We conclude that none of the discussed arguments support the use of ADs and because of this, the idea of ADs should be reassigned. (shrink)

Current literature suggesting a shared endophenotype between individuals with anorexia nervosa and autism spectrum disorder related to executive functioning has several limitations: performance-based instead of ecologically valid measures of set-shifting are used, lack of comparisons between same-sex groups, and reliance on adult samples only. This was the first study directly comparing female youth with ASD to female youth with AN using an ecologically valid measure of EF. A secondary data analysis combined caregiver-reported EF on the Behavior Rating Inventory of Executive (...) Functioning for 22 female adolescent youth with AN and 29 female adolescent youth with ASD. EF in each group was compared to population norms, and EF was compared between groups. Compared to population norms, adolescents with AN had elevated scores on shift, initiate, and emotional control scales, and adolescents with ASD had elevated scores on all scales of the BRIEF and were more likely to have scores in the clinical range. There were significant differences between groups on all but three scales. The cognitive profiles and clinical scores of AN females were not comparable to those of ASD females. The findings reveal a clear clinical impairment in females with ASD but not in females with AN. The results do not support the hypothesis of similar real-world EF profiles between these groups. The results encourage further exploration into the similarities and distinctions between these two disorders. (shrink)

Background:The pressing issue of aged care has made gendered caregiving a growing subject of feminist bioethical enquiry. However, the impact of feminism on empirical studies in the area of gendered care in Chinese sociocultural contexts has been less influential.Objectives:To examine female members’ lived experiences of gendered care in rural China and offer proper normative evaluation based on their experiences.Research design:This article adopted an empirical ethical approach that integrates ethnographical investigation and feminist ethical inquiry.Participants and research context:This article focused on three (...) cases of gendered caregiving for sick older members collected from a 6-month fieldwork conducted in a primary hospital in rural China.Ethical consideration:Approval was obtained from the university ethics committee.Findings:The empirical work highlights caregivers’ voices of weiqu (a sense of unfairness) resulting from their constrained choice when being pressured to engage in caregiving, which is associated with a disadvantageous socio-institutional and structural backdrop in current rural China. Informed by the conception of structural injustice, the normative analysis of this article traced various forms of social norms, structural deficiencies and ageing welfare institutions, as they intertwine and transmit into additional care deficiencies against rural families and their female caregivers.Conclusion:This article identified the constraint of gender hierarchy and its intersection with external social structure that exacerbate gendered oppression and exploitation of female labour in rural China. Normatively, this article argues that the current configuration of rural family care, featured by structural impediments and exploration of female labour, is unjust. Some policy recommendations are proposed to empower caregivers and advance care for rural older people. (shrink)

This paper argues that the missing voice in clinical ethics is that of informal caregivers. Despite their substantial contribution to care provided to individuals with disabilities, chronic illness or dementia, informal caregivers are rarely thought of as members of the healthcare team and their narratives are rarely listened to and included in clinical and ethical decisions. Addressing this gap, this paper discusses the reasons for the systemic misrecognition of informal caregivers in healthcare systems and argues for their (...) greater narrative inclusion on the clinical, legal and social planes. (shrink)

Background and aims. In pediatrics receiving a diagnosis of a chronic condition is a matter that involves caregivers at first. Beyond the basic issues of caring for the physical body of the ill child, caregivers’ manners of facing and making sense of the disease orient and co-construct their children’s sensemaking processes of the disease itself. The aim of this article is to explore the experience of a rare chronic illness, Hereditary Angioedema (HAE), in pediatrics, from the caregivers’ (...) perspective. Hereditary Angioedema is characterized by subcutaneous swellings that can involve the mucosal tissues of external as well as internal parts of the body, manifesting in a highly variable and unpredictable way in terms of localization, severity, and frequency. Materials and methods. Within a qualitatively-driven research design, we conducted a qualitative narrative semiotic analysis of n.28 mothers’ narratives on their children’s disease experience. Narratives were collected by an ad hoc interview on three domains of the disease experience: A. interpretation of the disease variability; B. dialogical processes; C. management of the disease. Subsequently, we executed a TwoStep cluster analysis for categorical data to detect cross-sectional profiles of the maternal sensemaking processes of the disease. Results. The coding grid was built analyzing the characteristic of the narrative links that orient the connection between the elements of the experience within each domain: A. the connection among events, for the domain of the interpretation of the disease variability; B. the connection between self and other, for the domain of the dialogue; C. the connection among sensemaking and actions, for the domain of the management of the disease. Results from cluster analysis show three narrative profiles: 1. adempitive; 2. reactive; 3. dynamic. Discussion. Profiles will be discussed in the light of the general conceptual framework of the Sense of Grip on the Disease (SoGoD) highlighting the importance of those sensemaking processes which, instead of relying on a coherent and close interpretation of the disease, are characterized by a degree of tolerance for the uncertainty and the unknowingly. (shrink)

This work explores caring robots' lifesaving benefits, particularly during contagion, while probing the threat they pose to interpersonal engagement and genuine human caregiving. As humans, we have a binding moral responsibility to care for the Other, and genuine caring demands our embodied, human-to-human presence.

The sacrifices of nurses in hard-hit cities during the early stages of the COVID-19 pandemic and of family caregivers for people with late-stage Alzheimer’s disease present two puzzles. First, traditional accounts of supererogation cannot allow for the possibility of making enormous sacrifices that make one’s actions supererogatory simply to do what morality requires. These caregivers, however, are doing their moral duty, yet their actions also seem to be paradigmatic cases of supererogation. I argue that Dale Dorsey’s new account (...) of supererogation can solve this puzzle. Second, these caregivers often deny that they are heroic, but standard explanations of these assertions either diminish their sacrifice, say they are confused, or attribute to them a vice. If we want to understand them without diminishing them, we should instead see their denials as a response to what Beth DeVolder calls compulsory heroism. Compulsory heroism occurs when someone is foisted into the role of hero for doing their moral duty as a distraction from the social realities that make doing their duty involve inordinate sacrifice. (shrink)

In the early twenty-first century, we stand on the threshold of welcoming robots into domains of human activity that will expand their presence in our lives dramatically. One provocative new frontier in robotics, motivated by a convergence of demographic, economic, cultural, and institutional pressures, is the development of “carebots”—robots intended to assist or replace human caregivers in the practice of caring for vulnerable persons such as the elderly, young, sick, or disabled. I argue here that existing philosophical reflections on (...) the ethical implications of carebots neglect a critical dimension of the issue: namely, the potential moral value of caregiving practices for caregivers. This value, I argue, gives rise to considerations that must be weighed alongside consideration of the likely impact of carebots on care recipients. Focusing on the goods internal to caring practices, I then examine the potential impact of carebots on caregivers by means of three complementary ethical approaches: virtue ethics, care ethics, and the capabilities approach. Each of these, I argue, sheds new light on the contexts in which carebots might deprive potential caregivers of important moral goods central to caring practices, as well as those contexts in which carebots might help caregivers sustain or even enrich those practices, and their attendant goods. (shrink)

BackgroundSevere brain injury is a leading cause of death and disability. Diagnosis and prognostication are difficult, and errors occur often. Novel neuroimaging methods can improve diagnostic and prognostic accuracy, especially in patients with prolonged disorders of consciousness (PDoC). Yet it is currently unknown how family caregivers understand this information, raising ethical concerns that disclosure of neuroimaging results could result in therapeutic misconception or false hope.MethodsTo examine these ethical concerns, we conducted semi-structured interviews with caregivers of patients with PDoC (...) who were enrolled in a concurrent neuroimaging research program designed to detect covert consciousness following severe brain injury. Caregivers held surrogate decision-making status for a patient. Interviews were conducted at two time points for each caregiver. The first interview occurred before the disclosure of neuroimaging results. The second occurred after disclosure. Descriptive analysis was applied to the data of four interview topics: (1) expectations for neuroimaging; (2) reactions to evidence of preserved cognition; (3) reactions to null results; and (4) understanding of the results and study.ResultsTwelve caregivers participated in the study; two caregivers shared surrogate decision-making status for one patient with PDoC. Twenty-one interviews were completed; one caregiver declined to participate in the post-disclosure interview. Three patients with PDoC associated with the study displayed evidence of covert consciousness. Overall, caregivers understood the neuroimaging research and results. Caregivers who received results of covert consciousness were generally pleased. However, there was some variation in expectations and reactions to these data and null results.ConclusionThis study, for the first time, reveals caregiver expectations for and reactions to neuroimaging evidence of covert consciousness in patients with PDoC. Caregivers understood the neuroimaging research and results, casting doubt on speculative ethical concerns regarding therapeutic misconception and false hope. However, disclosure of neuroimaging result could be improved. Pre-disclosure consultations might assist professionals in shaping caregiver expectations. Standardization of disclosure might also improve comprehension of the results. (shrink)

Background:The management of challenging behaviours in inpatient with intellectual disability and/or autism spectrum disorders can lead to an escalation of control measures. In these complex situations where patients have an intellectual disability/autism spectrum disorder accompanied by a psychiatric comorbidity, the experiences of caregivers related to the crisis management have rarely been studied.Purpose:This study examined the moral experiences of caregivers related to challenging behaviours’ management and alternatives to control measures.Research design:Using Charles Taylor’s hermeneutic framework, a 2-month focused ethnography with (...) a participatory approach was used.Participants and research context:Sixteen caregivers were interviewed in a Canadian mental health setting for adults with intellectual disability/autism spectrum disorder and psychiatric comorbidity.Ethical considerations:The research was conducted in compliance with the Declaration of Helsinki and local Research Ethics Board approval. Written informed consent was collected systematically from participants.Findings:By accounting for caregivers’ moral experiences, this study sheds light on a neglected dimension of the care relationship: the vulnerability of the caregiver. We highlight the main barriers and facilitators to alternatives to control measures. First, a caregiver’s vulnerability was characterised by the overall impact of challenging behaviours and the moral distress associated with the use of control measures and exclusion mechanisms of intellectual disability/autism spectrum disorder patients. Second, a strong ambiguity between care and control measures and a lack of inclusive approaches were identified as the two main barriers to challenging behaviour management. Third, the involvement, both professional and personal, of caregivers was deemed necessary to implement alternatives to control measures.Discussion:A conflict of values opposes two conceptions of autonomy: a rational autonomy, which is counterproductive to the reduction of control measures, versus a relational autonomy based on shared vulnerability.Conclusion:The recognition of caregiver’s vulnerability is a benchmark to create alternative approaches, which defuse the logic of control and promote an ethics of care within which caregivers’ self-concern can be understood as fostering mutual respect. (shrink)

Modern medical technology has made it possible for babies to survive with conditions that would have ended their lives only half a century ago. But complex health care interventions and regimens are not enough. These children require support, caregiving, and constant vigilance from their families, especially their parents. Sometimes referred to as children with "special needs," their dependency and vulnerability may stem from genetic disorders, premature births, serious accidents, or illness. This includes conditions such as severe autism spectrum disorder, Down (...) syndrome, hypoxic ischemic encephalopathy, Trisomy 13, Trisomy 18, Fragile X Syndrome, spina bifida, and brain damage... (shrink)

For caregivers of minimally communicative individuals, providing support in the absence of clearly meaningful responses is ethically fraught. We conducted a secondary analysis of qualitative data from caregivers of individuals who are minimally communicative, including persons with advanced dementia and individuals in disorders of consciousness. Our analysis led to two central claims: (1) Personhood is a threshold concept that is situated, relational, and dynamic and (2) in circumstances in which personhood is difficult to judge, caregivers can “fill (...) the gap” to reach the threshold through a repertoire of strategies. Because personhood is in part an attribution from others, a situational loss of personhood does not preclude restoration, nor does it eliminate moral status. (shrink)

This paper examines the ethics of using assistive technology such as video surveillance in the homes of people living with dementia. Ideation and concept elaboration around the introduction of a camera-based surveillance service in the homes of people with dementia, typically living alone, is explored. The paper reviews relevant literature on surveillance of people living with dementia, and summarises the findings from ideation and concept elaboration workshops, designed to capture the views of those involved in the care of people living (...) with dementia at home. The research question relates to the ethical considerations of using assistive technologies that include video surveillance in the homes of people living with dementia, and the implications for a person living with dementia whenever video surveillance is used in their home and access to the camera is given to the person’s family. The review of related work indicated that such video surveillance may result in loss of autonomy or freedom for the person with dementia. The workshops reflected the findings from the related work, and revealed useful information to inform the service design, in particular in fine-tuning the service to find the best relationship between privacy and usefulness. Those who took part in the workshops supported the concept of the use of camera in the homes of people living with dementia, with some significant caveats around privacy. The research carried out in this work is small in scale but points towards an acceptance by many caregivers of people living with dementia of surveillance technologies. This paper indicates that those who care for people living with dementia at home are willing to make use of camera technology and therefore the value of this work is to help shed light on the direction for future research. (shrink)

Due to improvements in medicine, the figures of patients with disorders of consciousness (DoC) are increasing. Diagnostics of DoC and prognostication of rehabilitation outcome is challenging but necessary to evaluate recovery potential and to decide on treatment options. Such decisions should be made by doctors and patients’ surrogates based on medico-ethical principles. Meeting information needs and communicating effectively with caregivers as the patients´ most common surrogate-decision makers is crucial, and challenging when novel tech-nologies are introduced. This qualitative study aims (...) to explore information needs of informal DoC caregivers, how they manage the obtained information and their perceptions and experiences with caregiver-physician communication in facilities that implemented innovative neurodiagnostics studies. In 2021, we conducted semi-structured interviews with nine caregivers of clinically stable DoC patients in two rehabilitation centers in Italy and Germany. Participants were selected based on consecutive purposeful sampling. Caregivers were recruited at the facilities after written informed consent. All interviews were recorded, transcribed verbatim and translated. For analysis, we used reflexive thematic analysis according to Braun & Clarke (2006). Caregivers experienced the conversations emotionally, generally based on the value of the information provided. They reported to seek positive information, comfort and empathy with-in the communication of results of examinations. They needed detailed information to gain a deep understanding and a clear picture of their loved-one’s condition. The results suggest a mismatch between the perspectives of caregivers and the perspectives of medical profession-als, and stress the need for more elaborate approaches to the communication of results of neu-rodiagnostics studies. (shrink)

There are differences in caregivers’ literacy and health literacy levels that may affect their ability to consent to children participating in clinical research trials. This study aimed to explore the effectiveness, and caregivers’ understandings, of the process of informed consent that accompanied their child’s participation in a dental randomized control trial (RCT). Telephone interviews were conducted with a convenience sample of ten caregivers who each had a child participating in the RCT. Pre-tested closed and open-ended questions were (...) used, and the findings were produced from an inductive analysis of the latter and a descriptive analysis of the former. Participants had limited understanding of the purpose of the RCT and rated the readability of the consent form more highly than they rated their understanding of the research. All felt that informed consent was vital, but some caregivers had not read the consent documents. Some caregivers enrolled their child in the RCT because they trusted the researchers, and the majority wanted to improve dental care for children. The informed consent process was not always effective despite high readability of the informed consent documents. Researchers must consider the health literacy of the study group, and actively engaging with caregivers to achieve meaningful informed consent may be challenging. Future research could explore participants’ perspectives of informed consent in populations with low health literacy and assess whether an underlying expectation not to comprehend health-related information may be a barrier to informed consent. (shrink)

Introduction: Maintaining dignity is one of patients is one of the main ethical responsibilities of caregivers. However, in many cases, the dignity of patients, especially autistic teenagers is not maintained. The extent to which dignity needs are met for this group within the Iranian care system is difficult to determine as dignity is an abstract concept, and there are few related research studies reported. Objectives: The objective of this study is to find out caregivers perspectives on dignity in (...) teenagers with autistic spectrum disorder. Research design: This study uses a qualitative research design. The data were collected through individual, semi-structured interviews and field notes developed during the interviews. In order to analyze the data, qualitative conventional content analysis was used. Participants and research context: In all, 16 professional caregivers for autistic teenagers working in public hospitals were recruited based on a targeted sampling method to reach data saturation from February 2016 to July 2017. Findings: The findings of this study were presented in three main themes, “privacy,” “respecting individual identity,” and “comprehensive support,” and 11 categories. Ethical consideration: This study’s protocol was approved by the Research Ethics Committee of medical universities located in Southeast of Iran and the required ethical principles were followed throughout. Discussion and conclusion: Based on the findings of this study from the perspective of caregivers, autistic teenagers need to be cared for and educated in a respectful environment where their privacy is maintained, their individual identities are respected, and they receive comprehensive familial, social, and financial support. These conditions would maintain the dignity of such teenagers and would result in appropriate behavioral outcomes. Therefore, it is suggested that a cultural, professional and institutional background in which all components of the autistic teenager’s dignity are protected and emphasized be provided. (shrink)

Background Physical morbidity is rife among patients with serious mental illness. When they are involuntarily hospitalized and even treated, they may still refuse treatment for physical illness leading clinicians to wonder about the ethics of coercing such treatments. Research aim This survey study explored psychiatric caregivers’ perceptions on whether compulsory treatment of physical illness is legal and whether it is justifiable in patients with serious mental illness and under what circumstances. Research design A questionnaire that included two case vignettes (...) of an involuntarily hospitalized psychiatric patient with diabetes refusing treatment with insulin for various reasons. The cases differed in terms of diabetes severity. Participants answered questions regarding the appropriateness of involuntary treatment. Participants and research context Psychiatric medical doctors and nurses working in a mental health center. ( N = 89, 50 female, ages 26–66). Ethical considerations The study was approved by the Medical Centre Institutional Review Board (IRB) and the University Ethics Committee. The respondents’ anonymity was kept. Participation was voluntary and consent was obtained. Results The severity of the patient’s medical condition and their reason for refusing treatment were associated with participants’ willingness to give insulin despite patient objection [( F(1, 87) = 49.41, p <.01; ( F(1, 87) = 33.44, p <.01), respectively]. Participants were more inclined to support compulsory treatment if the patient’s refusal was “illness-oriented” (i.e. directly related to psychiatric illness). Participants presented diverse views regarding the perceived legality of compulsory treatment of physical illness in such situations (illegal 63.09%; legal 23.8%; 13% unsure). The majority (53.5%–55.3%) of those who thought it was illegal supported compulsory treatment in high-severity, illness-oriented refusal situations. Conclusions The severity of the medical condition and the reason for treatment refusal influence psychiatric caregivers’ willingness to provide compulsory treatment for physical illness in involuntary hospitalized psychiatric patients. Beyond the legal framework, ethical guidelines for these situations are warranted, while decisions should be made on a case-by-case basis. (shrink)

Introduction: Maintaining patient dignity in a caregiving environment is one of the most important moral responsibilities for caregivers. Nonetheless, there are vulnerable groups, specifically teenagers, who in their final stages of life are prone to their dignity being threatened. Moreover, dignity is an abstract concept and there is no studies done on teenagers’ dignity in the final stages of life available in Iran.Purpose: The purpose of this study is to describe the caregivers’ experiences regarding teenagers’ dignity in the (...) final stages of life.Research design: This study is a descriptive phenomenological qualitative research project. The data was collected using deep individual and semi-structured interviews as well as taking notes. The Colaizzi analysis method was used to analyze the data.Participants and research context: 22 caregivers working with teenagers in the final stages of life in a public health centers in Iran who had the criteria to enter the study were selected using a purposeful sampling method and invited to join the study from August 2018 to June 2019. The sampling continued until data saturation.Findings: The findings of the present study were presented in the form of three main themes including “private,” “respecting individual identity,” and “attention to teenagers’ needs” and an additional eight categories.Ethical Considerations: The study’s protocol was approved by the Research Ethics Committee of the Shiraz University of Medical Sciences and all ethical principles were followed throughout the study.Discussion and conclusion: Based on the present study from the caregivers’ point of view, teenagers in their final stages of life required to be cared for and taught in an environment that their privacy was maintained and their individual identity was respected as well as getting attention from the caregivers and companions. In such situations, the teenagers felt calm and their dignity was maintained; therefore, providing a cultural, professional, and organizational setting where all the components of maintaining dignity in teenagers are supported and prioritized is necessary. (shrink)

As workers struggle to combine work and family responsibilities, discrimination against workers based on their status as caregivers is on the rise. Although both women and men feel the pinch, caregiver discrimination is particularly damaging for women, because care is intricately tied to gendered norms and expectations. In this article, we analyze caregiver discrimination cases resolved by Canadian Human Rights Tribunals from 1985 through 2016, to explore how work and caregiving clash. We identify issues involved in disputes and the (...) ways gendered expectations about work–life facilitation inform disputes and outcomes. We find that although women are more likely to bring claims and obtain favorable outcomes, the legal interpretation of claims is highly gendered. Women bring claims involving both their presumed status as caregivers and the practical challenges of seeking accommodations for care, whereas men’s claims are largely accommodation based. In adjudicating cases, Tribunals are more likely to see women than men as lacking credibility when making their claims, questioning their competence and legitimacy. In contrast, men struggle to demonstrate the legal basis of work–family interference, failing to convey how seriously work interferes with family responsibilities. (shrink)

As the global prevalence of Alzheimer’s disease increases, the need to understand family caregiving becomes increasingly pressing. I argue that there is an under-recognized form of caregiving for people with early to mid-stage Alzheimer’s disease. This type of caregiving involves, roughly, helping people reason through their values. It arises along with the loss of the capacity for executive functioning. Moreover, it is prone to give rise to moral distress, which is an under-recognized vulnerability in family caregiving. Categories of family caregiving (...) thus need to be expanded, and moral distress needs to be recognized not only in the context of nursing. (shrink)

The United States relies on uncompensated family caregivers to provide most of the long-term care required by older adults as they age. But such care comes at a significant financial cost to these caregivers in the form of lower lifetime earnings and diminished Social Security retirement benefits, ineligibility for Medicare coverage of their healthcare costs, and minimal retirement savings. To reduce the impact of uncompensated caregiving on the intergenerational transmission of poverty, this paper discusses three possible mechanisms of (...) compensating family caregivers: public payments, deemed wage credits under Social Security, and income tax incentives. (shrink)

Professional caregivers who work with the trauma and suffering of others, such as doctors, nurses and psychologists, may face significant challenges along with the risk of adverse, long-term mental and physical health problems. Caregivers with responsibility for dependants outside their professional work reported more stress. This finding is of particular relevance in respect of caregivers in under-developed countries such as Zimbabwe, where many households have taken in additional children who have been orphaned, whose parents are ill, or (...) whose parents have temporarily gone elsewhere in search of work. For the purposes of the study, a qualitative phenomenological research design was selected as appropriate to the focus on human experience. An interpretative approach was adopted to explore and explicate the lived experiences of the participants and the meaning they attached to them. The major sources of stress for professional caregivers emerged as being resource constraints, interpersonal issues, and personal issues. Factors found to promote coping include the caregiver’s meaning making perspective, making a difference, and constructing a sense of personal control. (shrink)

From a clinical ethics perspective, I explore several traditional arguments that deem deception as morally unacceptable. For example, it is often argued that deception robs people of their autonomy. Deception also unfairly manipulates others and is a breach of important trust-relations. In these kinds of cases, I argue that the same reasons commonly used against deception can provide strong reasons why deception can be extremely beneficial for patients who lack mental capacity. For example, deception can enhance, rather than impair, autonomy (...) in certain cases. I argue that deception ought to only be used after considering several key morally relevant factors and provide a practical and morally justifiable framework for exploring these issues. (shrink)

Paternity certainty and matrilineal family ties have been used to explain the asymmetric caregiving of grandparents and aunts and uncles. The proximate mechanisms underlying biased kin investment, however, remain unclear. A central question of the study presented here was whether the parent-kin relationship is an important link in the caregiving. In a two-generational questionnaire study, we asked subjects to estimate the intensity of their relationships to parents, grandparents, aunts, and uncles (emotional closeness, investment received in childhood). In addition, the subjects’ (...) parents rated their emotional closeness to their parents and siblings. We found that the parent-kin relationship was closely linked to the relatives’ child care and could partly explain asymmetric caregiving. Maternal aunts played a special role as caregivers. Especially the mother’s younger or last-born sister cared intensively for nieces and nephews, regardless of her closeness to the subjects’ mother. (shrink)

We explored the care experiences and needs of the home caregivers of patients with amyotrophic lateral sclerosis (ALS) to improve their quality of life. We interviewed home caregivers in-depth and analyzed the data using Colaizzi's descriptive phenomenological method. We interviewed 11 home caregivers of patients with ALS with a disease duration between 1.5 and 4 years. Primary caregivers were predominantly female and were the patients' spouses. Daily caregiving time averaged 4–14 h for 0.5–3.5 years. Interview themes (...) included helplessness and adaptation to life changes, hopelessness, compassion for the patient’s prognosis, and expectation for diverse support. The study sample size was limited, as all participants were from a single tertiary hospital, and all patients had severe functional impairment. Caregivers of patients with ALS experience a considerable burden. Patients and their caregivers can benefit from diversified support channels, and assistive communication systems can be applied to home care. Future research will focus on in-home public long-term care services in China. (shrink)

As we near a time when robots may serve a vital function by becoming caregivers, it is important to examine the ethical implications of this development. By applying the capabilities approach as a guide to both the design and use of robot caregivers, we hope that this will maximize opportunities to preserve or expand freedom for care recipients. We think the use of the capabilities approach will be especially valuable for improving the ability of impaired persons to interface (...) more effectively with their physical and social environments. (shrink)

The aim of the present study was, by means of discussion highlighting ethical questions and moral reasonings, to increase understanding of the situations of caregivers and relatives of older persons living in a public nursing home in Sweden. The findings show that these circumstances can be better understood by considering two different perspectives: an individual perspective, which focuses on the direct contact that occurs among older people, caregivers and relatives; and a societal perspective, which focuses on the norms, (...) values, rules and laws that govern a society. Relatives and caregivers thought that the politicians were sending out mixed messages: they were praising caregivers and relatives for their efforts, but at the same time the public health care sector was subjected to significant cutbacks in resources. Both caregivers and relatives were dissatisfied and frustrated with the present situation regarding the care of older persons in public nursing homes. (shrink)

Harcourt argues that in clinical contexts, children and young people with mental health illness can experience epistemic, specifically testimonial, injustice when their perspectives are unjustifiably discounted by health service providers.1 Our goal in this commentary was to illustrate how caregivers, a critical component of CYP treatment triad, can also engage in testimonial injustice towards CYP patients. Testimonial injustice occurs when one suffers a credibility deficit and that credibility deficit is based on prejudice.2 Harcourt expands Fricker’s account of testimonial injustice (...) by arguing that for CYPs, the credibility deficits attributed to them by clinicians, for example, may result from epistemic arrogance in that CYPs are viewed as having unreliable knowledge about their condition. Harcourt writes: ‘Being a CYP is treated as a heuristic for epistemic unreliability across a wide range of domains’, including clinical settings. Harcourt’s expansion of Fricker’s account thus includes epistemic arrogance as an alternative necessary condition, in addition to prejudice, to apply the concept of testimonial injustice. We think Harcourt’s argument can also be extended to caregivers, who are central to the CYP treatment triad. We illustrate how this may be the case by drawing from research we conducted to understand the perspectives of clinicians and prospective families, both caregivers and paediatric patients with obsessive–compulsive disorder about the possibility of …. (shrink)

Patient-and-family-centered care (PFCC) is critical in end-of-life (EOL) settings. PFCC serves to develop and implement patient care plans within the context of unique family situations. Key components of PFCC include collaboration and communication among patients, family members and healthcare professionals (HCP). Ethical challenges arise when the burdens (e.g., economic, psychosocial, physical) of family members and significant others do not align with patients’ wishes. This study aims to describe the concept of vulnerability and the ethical challenges faced by HCPs in these (...) circumstances. Further, it assesses the contribution of clinical ethics consultation (CEC) in assisting HCPs to face these difficult ethical conundrums. Two clinical cases are analyzed using the Circle Method of CEC. The first regards the difficulty faced by the doctor in justifying treatments previously agreed upon between the patient and his/her friends. The second regards the patient’s concern about being a burden on their family. Family burdens in EOL settings challenge PFCC in that patient autonomy may be disregarded. This compromises shared decision-making between the patient, family and HCPs as a core component of PFCC. In their ability to promote a collaborative approach, CECs may assist in the successful implementation of PFCC. (shrink)

The case, which occurred in a public hospital in Turkey in 2005, exhibits a striking dilemma between a mother’s and her fetus’ interests. For a number of reasons, the mother refused to cooperate with the midwives and obstetrician in the process of giving birth, and wanted to leave the hospital. The care providers evaluated the case as a matter of maternal autonomy and asked the mother to give her consent to be discharged from the hospital, which she did despite the (...) fact that her cervix was fully open. She left the hospital and gave birth shortly thereafter. Subsequently, the baby died two days later. In light of the contemporary ethical principles, the mother’s competency could be debatable due to the physical and psychological conditions the mother confronted. Furthermore, protection of the fetus’ life should have been taken into account by the caregivers when making a decision concerning discharging of the mother. (shrink)

Cancer care has transitioned from clinical-based to home-based care to support longterm care in a more familiar and comfortable environment. This care transition has put family caregivers (FCGs) in a strategic position as care providers. Cancer care at home involves psychological and emotional treatment at some point, making FCGs deal with the stress of cancer patients frequently. Due to their limited care competencies, they need supportive care from healthcare professionals in cancer stress management. This study aims to examine how (...) types of demanded healthcare information affect the FCG’s role in reducing the stress of female cancer patients. The mindsponge theory was used in conceptual development and interpretation. Bayesian Mindsponge Framework (BMF) analytics were used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of healthcare information, FCGs with higher demand for cancer-specific information were more likely to need support in reducing the stress of female cancer patients. Meanwhile, FCGs with a higher demand for information about support services were less likely to need support to reduce cancer patients’ stress. Other types of healthcare information have ambiguous effects on the need for support in reducing cancer-induced stress. This study reveals that the demanded cancer-specific information, e.g., cancer prognosis or likely outcome, must be prioritized to assist FCG’s role in managing cancer stress. (shrink)

Adaptation and stress are two main concepts useful for better understanding the phases of illness and health-related human behavior. The two faces of adaptation, adaptation as a process and adaptation as a product, have raised the question of how long the adaptation process will take in cancer trajectories. The care setting transition from clinical-based into home-based cancer care has stressed the role of family caregivers (FCG) in cancer management. This study examines how types of demanded healthcare information affect the (...) FCG’s role in catalyzing the adaptation of female cancer patients. The mindsponge theory was used in conceptual development and results interpretation. Bayesian Mindsponge Framework (BMF) analytics was used for statistical analysis on a dataset of 48 spouses (husbands) and 12 other family members in five congested communities of Surabaya, Indonesia. Results showed that among the six types of demanded healthcare information, FCGs with a higher tendency to demand cancer-specific information are more likely to need support in catalyzing the adaptation of female cancer patients. Meanwhile, FCGs with a higher demand for information on alternative therapies are less likely to need support in catalyzing cancer adaptation. Other types of healthcare information have ambiguous effects on the need for support in cancer adaptation assistance. This study reveals that the demanded cancer-specific information, e.g., cancer’s prognosis or likely outcome, must be prioritized to assist FCG’s role in catalyzing adaptation among female cancer patients. Cancer prognosis and outcomes reflect the future of cancer care results. (shrink)

Background Decisions on limiting life-sustaining treatment for patients in the vegetative state (VS) are emotionally and morally challenging. In Germany, doctors have to discuss, together with the legal surrogate (often a family member), whether the proposed treatment is in accordance with the patient's will. However, it is unknown whether family members of the patient in the VS actually base their decisions on the patient's wishes. Objective To examine the role of advance directives, orally expressed wishes, or the presumed will of (...) patients in a VS for family caregivers' decisions on life-sustaining treatment. Methods and sample A qualitative interview study with 14 next of kin of patients in a VS in a long-term care setting was conducted; 13 participants were the patient's legal surrogates. Interviews were analysed according to qualitative content analysis. Results The majority of family caregivers said that they were aware of aforementioned wishes of the patient that could be applied to the VS condition, but did not base their decisions primarily on these wishes. They gave three reasons for this: (a) the expectation of clinical improvement, (b) the caregivers' definition of life-sustaining treatments and (c) the moral obligation not to harm the patient. If the patient's wishes were not known or not revealed, the caregivers interpreted a will to live into the patient's survival and non-verbal behaviour. Conclusions Whether or not prior treatment wishes of patients in a VS are respected depends on their applicability, and also on the medical assumptions and moral attitudes of the surrogates. We recommend repeated communication, support for the caregivers and advance care planning. (shrink)