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)

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)

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)

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 (persons living with dementia, professional and family caregivers) 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)

Introduction: Dignified care is one of the moral responsibilities of professional caregivers. However, in many cases the dignity of hospitalized patients, especially women in the delivery room, is not maintained. Dignity is an abstract concept and there has been no previous research exploring the dignity of pregnant women in the delivery room in Iran. Objectives: The objective of this study is to define and explain the concept of dignity for pregnant women in the delivery room from the perspectives of professional (...) caregivers. Research design: This is qualitative research. The data were collected through in-depth semi-structured individual interviews. The conventional content analysis method was used to analyze the data. In qualitative content analysis, participant narrative is examined in-depth and sorted into categories and themes. Participants and research context: Potential participants who met the entrance criteria for this study were approached between July 2016 and February 2017. In all, 20 professional caregivers working in the delivery room setting within Iranian general hospitals were invited to participate in the study. The sampling was done through targeted sampling until saturation was achieved. Ethical considerations: The research ethics committee of the Shiraz University of Medical Sciences has approved the study’s protocol and all commonly recognized ethical principles were followed throughout the study. Findings: The findings of this study were presented in three main themes, including “privacy,” “respecting patients’ preferences,” and “comprehensive attention” and eight categories. Discussions and conclusion: Women in the delivery room need to be taken care of in an environment where healthcare staff promote the preservation of dignity through maintaining privacy, by providing attentive care and through ensuring that patient preferences regarding care and treatment are respected. In such an environment, the dignity of these women would be maintained and desirable outcomes achieved. (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)

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)

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)

This study examines the sociolegal construction of the family, its impact on informal caregiving, and the implications for family nursing. Nurses were among the first healthcare workers to recognize the family as a crucial site of growth, development, and recovery from illness. Despite widespread endorsement of family‐centered principles, actual practice often falls short of ideals, and there is limited empirical evidence supporting the effectiveness of family‐based interventions. Through analysis of historical, legal, and sociological sources, this study argues that nursing (...) has not reckoned with the family's transformation from a public entity into a private repository of dependency care. The findings suggest that family nursing would benefit from greater attention to the legal, gendered, and economic dimensions of the family. (shrink)

The relationships between captive primates and their caregivers are critical ones and can affect animal welfare. This study tested the effect of caregivers using chimpanzee behaviors or not, in daily interactions with captive chimpanzees. In the Chimpanzee Behavior condition the caregiver presented chimpanzee behaviors. In the Human Behavior condition the caregiver avoided using chimpanzee behaviors. The chimpanzees had individual patterns of response and had significant differences in their responses to each condition. These data are compared to a similar study conducted (...) at The Zoo Northwest Florida. Both groups of chimpanzees were sensitive and responsive to the differences in conditions. These data suggest ways to improve animal welfare. (shrink)

Are physicians sometimes morally required to ease caregiver burden? In our paper we defend an affirmative answer to this question. First, we examine the well-established principle that medical care should be centered on the patient. We argue that although this principle seems to give physicians some leeway to lessen caregivers' suffering, it is very restrictive when spelled out precisely. Based on a critical analysis of existing cases for transcending patient-centeredness we then go on to argue that the medical ethos should (...) indeed contain a rule requiring physicians to alleviate caregiver burden under certain circumstances. Finally, we apply our findings to deep brain stimulation (DBS) for Parkinson's disease. We present empirical data from a recent study of DBS indicating that spousal caregivers of Parkinson patients treated with DBS are sometimes deeply troubled by the effects of the therapy and discuss what moral obligations the treating physicians may have in such cases. (shrink)

Migration often requires the renegotiation of familial and gender roles as immigrants encounter potentially competing values and demands. Employing ethnographic methods and including in-depth interviewing and participant observation, the authors explore the experiences of 29 South Asian and Chinese Canadian female family caregivers. Caregiving was central to their role as women and members of their ethnocultural community. The women were often engaged in paid labor that compressed the time available to fulfill their duties as caregivers. Women’s role in the (...) transmission of cultural values that serve to shore up the boundaries of their ethnic community did not allow for significant renegotiation of their caregiving responsibilities despite disrupted family networks and increased demands. These caregiving arrangements are more costly to women in Canada than in their countries of origin. (shrink)

This article reviews the work of philosopher Emmanuel Levinas to explore caregiving for dementia. It defends a dual thesis whereby it first articulates how Levinas provides a phenomenological description to account for why caregiving is subjectively dreadful and, second, how caregiving invites a fresh re-reading of Levinasian thought. The article introduces two different forms of otherness represented by death and dementia, respectively. This re-reading shows how dementia forces us to more immediately reckon with the intensity Levinas attributes (...) to the nature of human interaction. The article concludes with reflections about what dementia suggests about cultural attitudes towards responsibility and implications for caregiving practice. (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)

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)

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)

Background: When patients with schizophrenia feel a lack of dignity, their sense of worth is weakened and they are more likely to feel like a burden to their family. In this regard, families play a vital role in supporting the patient, who can effectively contribute to preserving their dignity. The concept of understanding the role of families in the patients’ dignity is influenced by various factors. Still, there is limited knowledge in this domain in the sociocultural context of Iran. Aim: (...) This study was to elucidate the role of family caregivers in the patients’ dignity with schizophrenia, based on the perspectives of patients, family caregivers, and healthcare personnel. Design: This qualitative study was conducted utilizing conventional content analysis. The data were accordingly collected through field notes, and semi-structured, in-depth face-to-face interviews with 16 patients with schizophrenia, 4 family caregivers, 2 nurses, and 3 psychologists. The data were analyzed according to Graneheim and Lundman (2004). Ethical Considerations: The study protocol was approved by the ethics committee and followed ethical principles closely. Findings: The analysis of the data led to the emergence of two subcategories as follows: “Under the umbrella of family support” and “Being ignored by the family.” The category of “Under the umbrella of family support” was characterized by subcategories including “Being the center of attention,” “Understanding the patient’s condition,” “Financial support,” and “Emotional support.” Besides, the category of “Being ignored by the family” was characterized by subcategories including “Rejection from the family,” “Not accepting the patient’s condition,” and “Tangential life with patients.” Conclusion: This study found that some family caregivers were trying to reach the stage of acceptance. Following the understanding of the patient’s condition, the family caregivers were responsible for the patient and were considered a strong support for the patient, and in such a situation, the patients’ dignity was respected. On the other hand, some family caregivers did not accept the patient’s condition and were indifferent to the patients’ needs, which in such a situation created grounds for violating the dignity of the patients. A deep understanding of the factors threatening the patients’ dignity with schizophrenia from their families can help health policymakers take positive steps toward preserving the dignity of these patients by designing and implementing programs aimed at raising awareness and empowering families. (shrink)

Few individuals are constitutionally incapable of showing concern for others at an early age, and malleability is possible. Individual variations will be best understood through study of the representational prerequisites of empathy in close conjunction with caregiving environments and affective underpinnings.

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)

In the UK, community care has led to more complex relationships for mental health nurses. They need to respect the rights of service users to confidentiality while also respecting the rights of family caregivers to information that directly affects them. An unsatisfactory situation has arisen in which utilitarian and legally driven motives have seen family caregivers’ interests become subsidiary to those of service users and providers. An ethical case is made for sharing information with family caregivers, even against the wishes (...) of service users. Through the use of a conceptual framework based on elements proposed by Thiroux — value of life, goodness or rightness, justice or fairness, truth-telling or honesty, and individual freedom — the article concludes that there is an ethical argument for sharing some information with family caregivers and that nurses should respect caregivers’ rights through their actions. Nurses’ actions are a commitment to seeking what is ‘good’ by making judgements based on what matters. It is argued that people and their relationships matter more than strict adherence to laws and codes. (shrink)

The number of family members caring and caregiving for a loved one undergoing physical and mental changes continues to increase dramatically. For many, this ongoing experience not only involves the “burden of caregiving” but also the “burden of grief” as their loved-one’s newfound medical condition can result in the loss of the person they previously knew. Dramatic cognitive, behavioral, and personality changes, often leave caregivers bereft of the significant relationship they shared with the affected person prior to the (...) illness or injury. This results in what we term conditions of acquired “non-death interpersonal loss”. Current approaches to these losses use an amalgam of models drawn from both death and non-death loss. Despite their utility, these frameworks have not adequately addressed the unique processes occurring in the interpersonal sphere where the grieving caregiver needs to reach some modus vivendi regarding the triad of “who the person was,” “who they are now,” and “who they will yet become.” In this paper we propose a process-based model which addresses cognitive-emotional-behavioral challenges caregivers meet in the face of their new reality. These require a revision of the interpersonal schemas and the relationships that takes into account the ongoing interactions with the affected family member. The model and its utility to identify adaptive and maladaptive responses to NoDIL is elaborated upon with clinical material obtained from caregivers of people diagnosed with major neuro-cognitive disorder and pediatric traumatic brain injury. The article concludes with implications for theory, research and clinical intervention. (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)

As Artificial Intelligence technology seems poised for a major take-off and changing societal dynamics are creating a high demand for caregivers for elders, children and those infirmed-robotic caregivers, may well be used much more often. This article examines the ethical concerns raised by the use of AI caregivers and concludes that many of these concerns are avoided when AI caregivers operate as partners rather than substitutes. Furthermore, most of the remaining concerns are minor and are faced by human caregivers as (...) well. Nonetheless, because AI caregivers’ systems are learning systems, an AI caregiver could stray from its initial guidelines. Therefore, subjecting AI caregivers to an AI-based oversight system is proposed to ensure that their actions remain both legal and ethical. (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)

Dance events as a caregiver intervention for persons with dementiaThe aim of the study was to illuminate the phenomenon of dance events as a caregiver intervention for persons with dementia in one nursing home as described by the caregivers. Seven caregivers were interviewed. The interviews were unstructured and conducted while the caregivers were watching a video of dance events arranged in the nursing home. The analysis was carried out using the phenomenological method developed by Giorgi. The results are presented in (...) five consistent themes: (1) prerequisites for dance events; (2) creating and preparing different kinds of activities related to the dance events; (3) emotional arousal; (4) caregivers’ situational understanding; and (5) dance events and contextual consequences and synthesis into a general structure. The meaning of the dance events as a caregiver intervention was founded not only on the dancing itself but also encompassed the ontological state of ‘being together’. (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)

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)

Providing medical care and planning for a procedure such as amputation may have different cultural contexts, based on patients’ country, comfort, and contract with their physician. These contexts may create complexities for physicians as they interact with patients and caregiving relatives. Issues such as the personal choices of a caregiving relative may appear to unduly influence the decisions behind complex healthcare choices. We consider several possible scenarios in the background of the complex case presented in “Family Loyalty as (...) a Cultural Obstacle to Good Care: The Case of Mrs. Indira,” in this issue of JCE. (shrink)

When a caregiver names objects dominating a child’s view, the association between object and name is unambiguous and children are more likely to learn the object’s name. Children also learn to name things other than solid objects, including nonsolid substances like applesauce. However, it is unknown how caregivers structure linguistic and exploratory experiences with nonsolids to support learning. In this exploratory study of caregivers and children we compare caregiver-child free-play with novel solid objects and novel nonsolid substances to identify the (...) linguistic and exploratory experiences associated with children’s word learning. We found systematic differences in interactions with novel objects, such that children performed more manual actions on solids than nonsolids and caregivers named solids more than nonsolids. Additionally, there was less synchrony between caregivers’ naming and children’s manual and visual exploration of nonsolids than solids. Consistent with prior work, we found that synchronous naming was associated with accurate recognition of solid object names. However, naming synchrony was not associated with recognition of nonsolid substance names or with generalization. Together these findings, though exploratory, suggest the coordination of caregiver-child play can shape what children remember about novel word-object associations for solid objects, but not nonsolid substances. (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)

Many people want to spend the last stages of their lives at home, in familiar surroundings, and possibly with people they know. However, this increasing desire on the part of older, ill, or even dying people also makes support from other people unavoidable, which in many cases involves family members, loved ones, or even friends. These family caregivers care for the person concerned, even though they lack the professional skills of nursing staff, for example, and have usually not been prepared (...) for this task. This article focuses on the ethical significance of the moral identity of family caregivers. While the effects of this care constellation on the caregivers have often been discussed in the scientific literature, ethical considerations regarding moral identity have so far been neglected. In the first step, the question of what is actually meant by the term moral identity is examined. The second step shifts attention to those people who have taken on the care of a loved one. The relevance of this previously discussed identity is emphasized by using study results and work in this context, and placed in relation to family caregivers. The third step shows that (1) moral identity must be understood as a necessary prerequisite for adequate and humane care, (2) this identity can be enhanced through the caregiving relationship, and (3) the activities undertaken by family caregivers reveal their moral identity. These considerations are finally summarized, provided with ethical aspects, and awareness of this important work of family caregivers is raised. (shrink)

Background: In the Netherlands, people with severe cognitive deficits due to Korsakoff syndrome are generally admitted to a specialized nursing home. Professional caregivers experience that these residents are often not aware of their deficits, and consequently, their willingness to accept care is relatively low. However, these residents need permanent support when performing daily tasks due to severe cognitive deficits. The combination of objective care needs and low subjective responsiveness makes caring for people with Korsakoff syndrome a complex undertaking. It is (...) unknown how professional caregivers deal with this complex task and how they manage the associated ethical challenges. Objectives: The aim of this study was to explore the professional caregivers’ perspectives on good care for residents with Korsakoff syndrome. Methods: A qualitative study design was used. Data were collected via semi-structured interviews. The Framework Method was used for the thematic analyses of the interview data. Participants and research context: Five specialized nursing homes participated in this study. Twelve professional caregivers, including nurses, nursing assistants, and support workers, were selected based on the ability to provide rich information on the study topics and to capture a variety of demographic and professional characteristics. Ethical considerations: The institutional review board of the VU University Medical Center Amsterdam approved the research protocol. The study was conducted in accordance with the ethical principles for medical research involving human subjects. Findings: Three perspectives on good care emerged: (1) making daily life a joint effort, (2) being steadfast, and (3) treating with respect. Discussion and conclusion: Professional caregivers try to achieve responsiveness in people with Korsakoff syndrome in three different ways. These perspectives reflect fundamentally different views on the care relationship and the autonomy of the resident. By elucidating the three perspectives, we hope to promote the practitioners’ reflection on their own ideas about good care for people with Korsakoff syndrome. (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)

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)

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)

Traditional considerations of justice for those who require caregiving have centered on what is due to the dependent person. However, considerations of justice also bear strongly on what is due to the caregiver. I focus on unpaid dependency work, too long treated as a private matter rather than a public concern. More is owed to those who render care: the division of labor is unjust, the nature of dependency work creates vulnerabilities for caregivers, and unpaid caregivers are disadvantaged in (...) the world of paid work. Obligations to mitigate these facts are ultimately based on the truth that all members of society at some point in their lives benefit from caregiving and that noncaregivers benefit unfairly from the heavy distribution of dependency work to a small number of certain kinds of individuals. It is necessary to ask which agents of justice are responsible for remedying this state of affairs, and how. I propose a distributed scheme of obligation in which members of society and the state, as arbiter of social responsibility, share responsibility for the remedy. It is incumbent upon us as a society to refrain from making vulnerable the most essential among us, to reap benefits without sowing unjust burdens. (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)

In addition to the socio-relational framework of expressive behaviors (SRFB), we recommend integrating theoretical and empirical findings based on attachment theory. We advocate a dynamic interpretation of early caregiver–child interaction. The consequences of models from developmental psychology for the occurrence of psychopathology are demonstrated from a clinical perspective.

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)

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.

In recent years, the flow of undocumented labor from the global South to richer nations has increased considerably. Many undocumented women workers find employment as caregivers for the dependent elderly, whose numbers are burgeoning in affluent countries. Here we present a profile of undocumented non-citizen caregivers in the United States and delineate some of the key injustices they suffer. After identifying the causal factors responsible for the flow of undocumented labor from the global South to richer nations like the United (...) States, we discuss the criteria that a theory of transnational justice must meet if it is to address the problem of justice for this population. We argue that Iris Young's "social connection" model of responsibility is a promising approach for helping to correct the injustices suffered by undocumented, non-citizen caregivers. (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)

While the ethical significance of caregivers in neurological research has increasingly been recognized, the role of caregivers in brain- computer interface (BCI) research has received relatively less attention. Objectives: This report investigates the extent to which caregivers are mentioned in publications describing implantable BCI (iBCI) research for individuals with motor dysfunction, communication impairment, and blindness. Methods: The scoping review was conducted in June 2024 using the PubMed and Web of Science bibliographic databases. The articles were systematically searched using query terms (...) for caregivers, family members, and guardians, and the results were quantitatively and qualitatively analyzed. Results: Our search yielded 315 unique studies, 78 of which were included in this scoping review. Thirty-four (43.6%) of the 78 articles mentioned the study participant’s caregivers. We sorted these into 5 categories: Twenty-two (64.7%) of the 34 articles thanked caregivers in the acknowledgement section, 6 (17.6%) articles described the caregiver’s role with regard to the consent process, 12 (35.3%) described the caregiver’s role in the technical maintenance and upkeep of the BCI system or in other procedural aspects of the study, 9 (26.5%) discussed how the BCI enhanced participant communication and goal-directed behavior with the help of a caregiver, and 3 (8.8%) articles included general comments that did not fit into the other categories but still related to the importance of caregivers in the lives of the research participants. Discussion: Caregivers were mentioned in less than half of BCI studies in this review. The studies that offered more robust discussions of caregivers provide valuable insight into the integral role that caregivers play in supporting the study participants and the research process. Attention to the role of caregivers in successful BCI research studies can help guide the responsible development of future BCI study protocols. (shrink)

In this personal essay, Mark Osteen uses the metaphor of a pas de deux to dramatize how caring for his autistic son has enriched his scholarship and teaching. In his early years as the father of an autistic child, Osteen’s parental and professional roles clashed, but gradually he learns to use what his son teaches him—particularly about nonverbal communication and multiple forms of intelligence—to develop a theory of empathetic scholarship and to enhance his pedagogy.

Background: Persons with dementia are at risk of malnutrition and thus in need of assistance during mealtimes. Research suggest interventions for caregivers to learn how to facilitate mealtimes and eating, while other suggest a working environment enabling the encounter needed to provide high-quality care. However, the phenomenon of caring for this unique population needs to be elucidated from several perspectives before suggesting suitable implications that ensure their optimal health. Objectives: To illustrate the meanings within caregivers’ experiences of caring for persons (...) with dementia during mealtime situations. We also measured weight and food intake among individuals with dementia to explain better the phenomenon of caring for them during mealtimes. Methods: Mixed method including focus group interviews with seven caregivers analyzed using phenomenological hermeneutics. In addition, for nine persons with dementia, weight and food intake were collected and descriptive statistics were calculated. Ethical considerations: Ethical review was obtained from an ethics committee, and all caregivers signed a consent form after being informed on the issue of research ethics. Relatives for persons with dementia were informed and signed the consent. In addition, throughout the study, the persons’ expressions were observed aiming to respect their vulnerability, integrity, and dignity. Findings: One theme emerged from interviews (struggling between having the knowledge and not the opportunity), which was built upon three subthemes (being engaged and trying; feeling abandoned and insufficient; being concerned and feeling guilty). Seven of nine persons with dementia lost a minimum of 1.3 kg of weight and ate a maximum of 49.7% of the food served. Conclusion: Caregivers struggle because they have knowledge about how to provide high-quality care but are unable to provide this care due to organizational structures. The weight loss and insufficient eating among the persons with dementia may support this conclusion. Sufficient time for adequate care should be provided. (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)