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)

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)

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)

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)

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)

This paper examines moral dilemmas faced by family caregivers of older adults who employ live-in migrant care workers. Being both a family caregiver as well as an employer of a live-in migrant care worker often puts family members at a crossroad, where moral decisions must be made. Lacking a formal role, family members do not have a professional code of ethics or other clear rules that can guide their actions, and their choices are rooted in (...) cultural, community, familial, and personal values. This paper discusses moral dilemmas that result from family caregivers’ dual commitment, to the wellbeing of their older sick relative who is the recipient of care, and to the wellbeing of the live-in care worker whom they employ. The paper uses relational ethics as a theoretical framework to discuss three cases that involve complex moral decision making in real life. (shrink)

The overall purpose of this cross-country Nordic study was to gain further knowledge about maintaining and promoting dignity in nursing home residents. The purpose of this article is to present results pertaining to the following question: How is nursing home residents’ dignity maintained, promoted or deprived from the perspective of family caregivers? In this article, we focus only on indignity in care. This study took place at six different nursing home residences in Sweden, Denmark and Norway. Data collection methods (...) in this part of this study consisted of individual research interviews. Altogether, the sample consisted of 28 family caregivers of nursing home residents. The empirical material was interpreted using a hermeneutical approach. The overall theme that emerged was as follows: ‘A feeling of being abandoned’. The sub-themes are designated as follows: deprived of the feeling of belonging, deprived of dignity due to acts of omission, deprived of confirmation, deprived of dignity due to physical humiliation, deprived of dignity due to psychological humiliation and deprived of parts of life. (shrink)

In the last decade, the cases of breast and cervical cancer have been positioned at the top rank of cancer statistics worldwide. Consequently, many husbands become family caregivers (FCGs) and get the burden of cancer caregiving. Being blind and incompetent, they need supportive care from healthcare professionals (HCPs). To support them, HCPs provide various healthcare information to meet their needs. Further, their demand for a specific type of healthcare information may reflect their need for emotional support from the HCPs (...) to reduce the burden. This study aims to examine the predictors of the need for emotional support among FCGs of female cancer patients by analyzing the demanded healthcare information. 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 husbands and 12 significant others in five congested communities of Surabaya, Indonesia. Results showed that among the six types of healthcare information, the demanded cancer-specific information and information on cancer physical needs significantly predict the need for emotional support among respondents. Meanwhile, FCGs with a higher demand for information on alternative therapies are less likely to need emotional support. Other types of information have ambiguous effects on the need for emotional support. This study reveals that the demanded cancer-specific information, e.g., cancer prognosis or likely outcome, and information on cancer physical needs must be prioritized in information disclosure to meet the needs for emotional support among FCGs of female cancer patients. (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)

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)

Background: Compassion is the core of nursing care and the basis of ethical codes. Due to the complex and abstract nature of this concept, there is a need for further investigations to explore the meaning and identify compassionate nursing care. Objectives: The purpose of this study was to identify and describe compassionate nursing care based on the experiences of nurses, patients, and family caregivers. Research design: This was a qualitative exploratory study. Data were analyzed using the conventional content analysis (...) method. Participants and research context: Nurses, hospitalized patients, and family caregivers in different educational hospitals in an urban area of Iran were selected from February 2016 to December 2017 using a purposeful sampling method (n = 34). In-depth and semi-structured interviews, focus group interviews, and field notes were used for data collection. Ethical considerations: The study was approved by the University’s Ethics Committee. The participants were informed about the aim and method of the study, reasons for recording the interviews, confidentiality of data, and voluntary nature of participation in this study. Findings: Data from interviews and filed notes were analyzed and classified into three themes: “effective interaction,” “professionalism,” and “continuous comprehensive care.” Discussion and conclusion: Emerged themes of this study involved holistic care in the current literature on nursing with an emphasis on effective interaction and professionalism. Nurses can understand patients’ and family caregivers’ comprehensive needs through interaction skills. In addition, clinical proficiency, maintaining professional ethics’ standards along with holism, and continuity in care are examples of compassionate care. Education program about compassionate care can enhance the quality of nursing care. (shrink)

Background: Although family caregivers play an important role in end-of-life care decisions, few studies have examined the communication between family caregivers and patients at the end of life. Objective: The objective was to describe family caregivers’ attitudes toward death, hospice, and truth disclosure. Research design: A quantitative method was used, and a closed-ended survey of 140 family caregivers was conducted in China. The subjects included 140 primary family caregivers of elders with terminal cancer enrolled at (...) a hospice center from April to August 2017. Participants: 140 primary family caregivers of elders with terminal cancer participated the study. Research Context: A high proportion of cancer patients continue to receive inadequate information about their illness. Family caregivers’ inhibitions about disclosing information to cancer patients have not yet been the objects of research in China. Ethical considerations: This study was reported to and approved by the Regional Ethics Committee in Shenzhen, China. Findings: A questionnaire survey collected information on family caregivers’ background information, emotional state, personal needs, death attitudes, and truth-disclosure opinions. The results revealed that family caregivers’ death attitudes and truth-disclosure opinions played an important role in the process of caring for elders with terminal cancer. Discussion: By adopting a quantitative method, the author revealed not only the general patterns of family caregivers’ attitudes toward cancer diagnosis disclosure but also the reasons for their actions and the practices of family disclosure. Conclusion: The findings suggested that ineffective communication concerning end-of-life issues resulted from family caregivers’ lack of discussion and difficulty in hearing the news. Future studies should examine strategies for optimal communication between family caregivers and patients, especially with regard to breaking the bad news. Professional training in breaking bad news is important and is associated with self-reported truth-disclosure practices among family caregivers. (shrink)

Background Voluntary assisted dying became lawful in Victoria, the first Australian state to permit this practice, in 2019 via the Voluntary Assisted Dying Act 2017 (Vic). While conscientious objection by individual health professionals is protected by the Victorian legislation, objections by institutions are governed by policy. No research has been conducted in Victoria, and very little research conducted internationally, on how institutional objection is experienced by patients seeking assisted dying. Methods 28 semi-structured interviews were conducted with 32 family caregivers (...) and one patient about the experience of 28 patients who sought assisted dying. Participants were interviewed during August-November 2021. Data from the 17 interviews (all with family caregivers) which reported institutional objection were analysed thematically. Results Participants reported institutional objection affecting eligibility assessments, medication access, and taking the medication or having it administered. Institutional objection occurred across health settings and was sometimes communicated obliquely. These objections resulted in delays, transfers, and choices between progressing an assisted dying application and receiving palliative or other care. Participants also reported objections causing adverse emotional experiences and distrust of objecting institutions. Six mediating influences on institutional objections were identified: staff views within objecting institutions; support of external medical practitioners and pharmacists providing assisted dying services; nature of a patient’s illness; progression or state of a patient’s illness; patient’s geographical location; and the capability and assertiveness of a patient and/or caregiver. Conclusions Institutional objection to assisted dying is much-debated yet empirically understudied. This research found that in Victoria, objections were regularly reported by participants and adversely affected access to assisted dying and the wider end-of-life experience for patients and caregivers. This barrier arises in an assisted dying system that is already procedurally challenging, particularly given the limited window patients have to apply. Better regulation may be needed as Victoria’s existing policy approach appears to preference institutional positions over patient’s choice given existing power dynamics. (shrink)

Le Forum économique mondial a qualifié la démence de l'une des plus grandes crises sanitaires mondiales du XXIe siècle. Dans cet article, je soutiens que les soins non rémunérés prodigués par la famille ou les proches des personnes atteintes de démence devraient être une question de santé publique. Shaji et Reddy l’ont proposé en 2012 dans le contexte des soins aux personnes atteintes de démence en Inde. Ils reconnaissent explicitement l’influence de l’article de Talley et Crews de 2007 sur la (...) prestation de soins en tant que nouveau problème de santé publique. Cependant, ils limitent leur proposition aux soins prodigués aux personnes atteintes de la maladie d’Alzheimer et de démences apparentées (MADA), ce que je considère comme une première étape importante dans l’élaboration d’un argumentaire visant à inscrire plus fermement les soins dans un programme de santé publique. Pour étayer mon propos, j’établis tout d’abord que la prestation de soins est un déterminant social de la santé. Ensuite, je réfute les objections à l’ajout de la prestation de soins aux personnes atteintes de la MADA à un programme de santé publique, car cela entraînerait une dérive de la mission de la santé publique. Je soutiens ensuite qu’une compréhension large de la santé publique peut inclure ce type de prestation de soins et est préférable car elle met en évidence une question d’équité en matière de santé, la nature sexuée de la prestation de soins. Enfin, je soutiens qu'une définition de la santé publique incluant les déterminants sociaux de la santé et la prestation de soins est mieux adaptée pour faire face aux conséquences sanitaires de l’évolution actuelle des schémas démographiques. Mon argumentation renforce les écrits sur la migration qui appellent à l’élargissement du champ d’application de la santé publique. (shrink)

This paper asks whether adult children have aduty of justice to act as caregivers for theirfrail, elderly parents. I begin (Sections I.and II.) by locating the historical reasons whyrelationships within families were not thoughtto raise issues of justice. I argue that thesereasons are misguided. The paper next presentsspecific examples showing the relevance ofjustice to family relationships. I point outthat in the United States today, the burden ofcaregiving for dependent parents fallsdisproportionately on women (Sections III. andIV.). The paper goes on (...) to use Rawls''theoretical tool of the veil of ignorance toargue that caring for parents should not belinked to a person''s sex and more generally,that there is no duty of justice to assume therole of caregiver for dependent parents(Sections V.). Although justice does notprovide the moral foundations for parent care,I show that it nonetheless places importantlimits on the instinct to care. I concludethat the voice of justice should be audible,and is intrinsically present, withinfamilies. (shrink)

Fear of cancer is mostly related to cancer recurrence, metastasis, additional cancer, and diagnostic tests. Its legacy as a lethal disease has raised fear of approaching death. Currently, cancer’s total suffering and the worsening phenomena have raised fear, especially among female patients. Family caregivers (FCGs) who are responsible for the day-to-day cancer care at home need to help the patients deal with this fear frequently. Due to the limited care competencies, they need supportive care from healthcare professionals in cancer (...) fear management. This study aims to assess how types of demanded healthcare information affect the FCG’s role in reducing the fear 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 on cancer-specific information and information on cancer physical needs were more likely to need support in reducing the fear of female cancer patients. Meanwhile, FCGs with a higher demand for information on support services were less likely to need support to reduce cancer patients’ fear. Other types of healthcare information have ambiguous effects on the need for support in reducing cancer-induced fear. This study reveals that the demanded cancer-specific information, e.g., cancer’s prognosis or likely outcome and information on cancer physical needs, need to be met in priority to assist FCG’s role in cancer fear management. (shrink)

Family relationships are complex, interdependent, multifactorial, cultural, and sociopolitical. In instances of family caregiving, the dynamics of these relationships influence the well-being of all members. This paper will address one dynamic of family relationships, moral reasoning, as set forth in the theories of Carol Gilligan. Gilligan's theories about two patterns of reasoning, based on the ethics of justice and care, will be examined within “stories” from fiction and interviews with family caregivers. This examination will raise issues (...) about Gilligan's theories as well as about the literary works themselves and will suggest new ways for health professionals to work with family caregivers. (shrink)

Background and aims: Liver transplantation provides an opportunity of survival for patients with liver failure, however, this procedure is known to be psychologically and physically fatiguing for patients and their informal caregivers. The aim of this study was to investigate how perceived social support and the distribution of dependency were associated with the psychological wellbeing of patients waiting for liver transplantation and their caregivers, as a dyad. Methods: The present was a cross sectional study. 95 participants were recruited at a (...) hospital in Northern Italy, during the psychological evaluation for inclusion in the transplantation list: 51 patients (19 with alcohol-related illness), and 44 family caregivers. Both patients and caregivers filled in a Symptom Checklist and Kelly's Dependency Grids. Patients also compiled the Medical Outcomes Study Social-Support Survey, and caregivers the Family Strain Questionnaire Short- Form. Results: Caregivers reported important levels of strain, also strongly related to a worsening of their own and patients’ symptoms Patients with alcohol-related pathologies had a narrower social network, which corresponded to an increase in family strain. On the sample as a whole, regression analyses showed that perceived social support and dependency measures did not predict patients’ and caregivers’ symptoms. Nevertheless, cluster analysis identified a group of caregivers who distributed their dependency more and experienced lower levels of depression, anxiety and strain. Conclusions: These results suggest the usefulness of a dyadic approach in the research, prevention and care of liver diseases. A deeper comprehension of the functioning of dyads will help practitioners in the identification of situations at risk. (shrink)

Background Healthcare services are increasingly being shifted to home settings for patients nearing end-of-life. Consequently, the burden on family caregivers is significant. Their vulnerable situation remains poorly understood and there is little information available regarding their experiences of dignity. Aim This study seeks to understand the experiences of family caregivers related to dignity and loss of dignity, aiming to provide a deeper insight into their situation when caring for a home-dwelling family member nearing end-of-life. Research design and (...) participants This exploratory study consists of a second analysis combining data from two primary studies, including 24 family caregivers of a family member nearing end-of-life, and is founded upon Gadamer’s philosophical hermeneutics. Ethical considerations Approval was obtained from the Norwegian Agency for Shared Services in Education and Research and was based on voluntary participation, informed consent, and confidentiality. Results The following three main themes were identified: Having a meaningful existence within the living environment, being seen and valued as a family caregiver in relation with others and suffering in a space of loneliness. These contextual, relational, and existential perspectives were found to be closely interrelated. Conclusion and final considerations The dignity of family caregivers was closely tied to being seen as unique individuals, not merely caregivers, thereby requiring healthcare professionals (HCPs) to understand their personal needs. This study highlights the emotional distress and loneliness family caregivers feel in their dual role within the healthcare system, thereby calling for HCPs to adopt an attitude of gentleness and recognition to impart dignity-preserving care in homecare practices. (shrink)

Hong Kong’s Covid-19 epidemic circumstances have given us a valuable opportunity to reflect on Hong Kong’s elderly care policies. This essay argues that Hong Kong should learn from the West and provide a subsidy to family caregivers for proper elderly care. We rebut the social and moralistic reasons for not introducing such a subsidy in Hong Kong. We indicate that providing cash subsidy to family caregivers does not monetize or tarnish Confucian filial obligation to take care of elderly (...) people, but enable adult children from low-income families to undertake this obligation effectively. In addition, we contend that providing such a subsidy would not significantly affect the job market in Hong Kong and that incurred financial and manpower costs for monitoring family care are controllable. (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)

This review critically examines the current state of the science on the concept of family caregiver–care receiver mutuality, summarizes accomplishments and gaps and identifies directions for future theory development and research. Mutuality between family caregivers and care receivers is of increasing interest to researchers. However, no analysis of the current state of the science of this important concept has been published. Our literature search revealed 34 research articles that met inclusion criteria. The studies were assessed in terms (...) of conceptualization of mutuality, instrument development, populations studied, research designs and methods and findings. Significant scientific progress during the past 30 years includes the development of clear definitions and new instruments, expansion of research beyond the clinical populations in which mutuality was first studied, the use of a variety of research designs, and increasingly sophisticated methods of data analysis. Growing evidence suggests that mutuality is associated with caregiver emotional health outcomes and may decrease over time in the context of chronic illness. Directions for future research include development of new theoretical frameworks grounded in relational theory, development of theory on the dynamics of mutuality over time, exploration of mutuality in diverse cultures and populations, and intervention studies aimed at enhancing mutuality. (shrink)

ObjectiveCaring for patients with Alzheimer’s disease is a stressful situation and an overwhelming task for family caregivers. Therefore, these caregivers need to have their hardiness empowered to provide proper and appropriate care to these older adults. From the introduction of the concept of hardiness, few studies have been conducted to assess the hardiness of caregivers of patients with AD. Presumably, one reason for this knowledge gap is the lack of a proper scale to evaluate hardiness in this group. This (...) study was conducted to develop a reliable and valid Family Caregivers’ Hardiness Scale to measure this concept accurately among Iranian family caregivers sample.MethodsThis study is a cross-sectional study with a sequential-exploratory mixed-method approach. The concept of family caregivers’ hardiness was clarified using deductive content analysis, and item pools were generated. In the psychometric step, the samples were 435 family caregivers with a mean age of 50.26, and the data were gathered via an online form questionnaire. In this step, the items of the FCHS were evaluated using face and content validity. Then, the factor structure was determined and confirmed using exploratory factor analysis and confirmatory factor analysis followed by convergent and divergent validity, respectively. Finally, scale reliability, including stability, and internal consistency were evaluated.ResultsThe finding revealed that FCHS consists of five factors, namely, “Religious Coping”, “Self-Management”, “Empathic Communication”, “Family Affective Commitment”, and “Purposeful Interaction” that explained 58.72% of the total variance. The results of CFA showed a good model fit. Reliability showed acceptable internal consistency and stability.ConclusionBased on the results of the psychometric evaluation of the FCHS, turned out that the concept of hardiness in Iranian family caregivers is a multidimensional concept that is most focused on individual-cultural values, emotional family relationships, and social relationships. The designed scale also has acceptable validity and reliability features that can be used in future studies to measure this concept in family caregivers. (shrink)

Family care—when partners, relatives, or other proxies care for each other in case of illness, disability, or frailty—is increasingly considered an important pillar for the sustainability of care systems. For many people, taking on a caring role is self-evident. Especially in a palliative care context, however, family care can be challenging. Witnessing caregivers’ challenges may prompt compassionate nurses to undertake actions to reduce burden by adjusting tasks or activities. Using a care ethical approach, this theoretical paper aims to (...) provide nurses with an alternative perspective on caregiver burden and support. Drawing on the concepts of relationality and contextuality, we explain that family care often is not a well-demarcated or actively chosen task. Instead, it is a practice of responding to an all-encompassing “call” to care flowing from a relationship, within a social and cultural context where norms, motivations, and expectations shape people’s (sometimes limitless) care. We consider relational interdependence at the root of persisting in care provision. The question is then whether self-sacrifice is a problem that nurses should immediately solve. In ideal circumstances, self-sacrifice is the result of a conscious balancing act between values, but family care in the context of serious illness barely provides room for reflection. Yet, instant attempts to alleviate burden may overlook family caregivers’ values and the inherent moral ambiguities and/or ambivalent feelings within family care. Family care is complex and highly personal, as is finding an adequate balance in fulfilling one’s sometimes conflicting values, motivations, and social expectations. Therefore, we suggest that caregiver experiences should always be interpreted in an explorative dialogue, focused on what caring means to a particular family caregiver. Nurses do not have to liberate family caregivers from the situation but should support them in whatever overwhelms or drives them in standing-by their loved ones until the end. (shrink)

BackgroundThe wellbeing of people living with dementia and their family caregivers may be impacted by stigma, changing roles, and limited access to meaningful opportunities as a dyad. Group therapeutic songwriting and qualitative interviews have been utilized in music therapy research to promote the voices of people with dementia and family caregivers participating in separate songwriting groups but not together as dyads.ProceduresThis study aimed to explore how ten people with dementia/family caregiver dyads experienced a 6-week group TSW (...) program. Dyads participated in homogenous TSW groups involving 2–4 dyads who were either living together in the community or living separately because the person with dementia resided in a care home. The TSW program, informed by personhood, couplehood, family centered and group process frameworks, involved creating original lyrics through song parody and song collage. Qualified Music Therapists facilitated sessions and interviewed each dyad separately. Interviews were analyzed using interpretative phenomenological analysis.FindingsFive recurrent group themes were developed, indicating group TSW: was a positive shared experience, benefiting both members of the dyad and motivating further engagement with music; stimulated mental processes and reignited participants’ interests and skills; provided meaningful opportunities for reflection and connection with memories and life experiences; and prompted interaction and collaboration, leading to social connections, empathic relationships and experiences of inclusion. Participants also highlighted how: the facilitated process supported engagement, highlighting abilities and challenging doubts.ConclusionDyads identified group TSW as an opportunity to recognize strengths, voice ideas and opinions, share meaningful experiences, and do “more with music.” Participants valued TSW as a new, creative and stimulating experience that enabled connection with self and others and led to feelings of pride and achievement. Our findings further recognize how therapeutic intention and approach were reflected in participants’ engagement and responses regardless of dementia stage and type, dyad relationship, or musical background. This research may broaden perspectives and expand understanding about how people with dementia and their family caregivers access and engage in music therapy. (shrink)

Evidence of gender differences in the amount and type of care provided by family caregivers in hospice palliative home care suggests potential inequities in health and health care experiences. As part of a larger critical ethnographic study examining gender relations among clients with cancer, their family caregivers and primary nurses, this article describes gendered expectations and exemptions for family caregivers within the sociopolitical context of end‐of‐life at home. Data were collected from in‐depth interviews (n = 25), observations (...) of agency home care visits (n = 9) and analyses of policy and home care agency documents (n = 12). Employing a critical feminist lens, a gender‐based analysis revealed that structural discourses emphasizing an artificial divide between public and private spheres constructed end‐of‐life at home as private and apolitical. Associated with care of home and family, women were most impacted by these public/private discourses underpinning neoliberal values of cost‐efficiency. Findings suggest that a critical perspective is needed to assist policy makers and healthcare providers to view how caregiver experiences are shaped by structures that control the availability of resources. Thus, instead of focusing on caregivers' deficits, interventions should be directed at the social, political and economic conditions that shape gendered experiences. (shrink)

Background: Both anxiety and depression in family caregivers of advanced cancer patients are common, and they have a negative influence on both the FCs and the patients. Some studies suggested that a variety of interventions could alleviate the psychological symptoms of FCs. However, there is no consensus on much more effective methods for intervention, and relatively high-quality research is blank in psychological problems of these population in China. The validity of mindfulness-based stress reduction and psychological consultation guided by the (...) needs assessment tool in the psychological status of caregivers will be compared in this study to select a more suitable intervention for the FCs of advanced cancer patients in China.Methods and Analysis: A randomized N-of-1 trial would be conducted at the Cancer Hospital, Chinese Academy of Medical Sciences. Fifty eligible FCs of advanced cancer patients will be recruited, and all will receive three cycles of psychological intervention treatment, with each cycle including both of MBSR and psychological consultation guided by the NST. MBSR and psychological consultation guided by the NST will be compared with each other in each cycle, and the intervention sequence will be based on the random number table generated after the informed consent has been completed. Each treatment period is 2 weeks, and the interval between different treatment cycles or treatment periods is 1 week. The self-reported scales are measured at the beginning and end of each treatment period, including the Self-Rating Anxiety Scale, the Self-Rating Depression Scale, Distress Thermometer, Zarit Burden Interview, Chinese version of the Medical Outcomes Study 12-item Short Form, and Family Carer Satisfaction with Palliative Care scale.Dissemination: The protocol of the study was approved by the Institutional Review Board of the Ethical Committee of the Cancer Hospital, Chinese Academic of Medical Science. The results will be published in a peer-reviewed medical journal. The study is registered at Chinese Clinical Trials Registry with the trial registration number chiCTR2000033707. This study employs an innovative methodological approach on the effectiveness of MBSR and psychological consultation guided by the NST for psychological status of FCs of advanced cancer patients. The findings of the study will be helpful to provide high-quality evidence-based medical data for psychological intervention of FCs of advanced cancer patients, and guide clinicians on best quality treatment recommendations. (shrink)

Predictive medicine presents opportunities to consider later life under conditions of illness, such as dementia. This paper examines how family caregivers (N = 27) assess the opportunity of prediction and early diagnosis of dementia for oneself based on their particular experience. Furthermore, it compares their attitudes with laypersons’ attitudes (N = 43) towards genetic testing of APOE. By this, we elaborate how much personal experience impacts anticipation and affects, but also moral attitudes towards predictive medicine. Differences in our settings (...) do not allow for direct comparison, so our analysis focuses on multiple similarities in the assessments of predictive (non-genetic vs. genetic) testing. Groups’ reasoning showed also differences influenced mainly by personal experience. Family caregivers addressed more responsibility towards family and had more hopes into medical treatments. To cope with the disease, they expressed expectations to start with medicine and care decisions as early as possible. Laypersons, however, stressed self-determination more and expressed worries about the influence of the pharmaceutical industry by referring to unnecessary medication and, implicitly, the medicalization of aging. (shrink)

Mental health professionals frequently work with family caregivers in the provision of psychotherapy services to individuals with serious mental illness. To address the need for ethical guidelines for working with family caregivers, an analysis of relevant ethical and legal issues is provided within the context of dynamic mental health care and legal systems. When working with family caregivers, practitioners utilize the American Psychological Association’s Ethics Code (2010), legal codes, and a complex decision-making plan; identify and communicate ethical (...) obligations to family caregivers; consider the unmet needs of this population; avoid harm resulting from multiple relationships; and balance ethical duties of beneficence and respect for autonomy. (shrink)

In this study caring is shown to be a membershipbound activity to kin and gender categories with strong moral connotations. Being a daughter or being a son are good enough reasons for becoming a caregiver, more so for women than for men. Caregivers were interviewed within the research project The role of women in family care of disabled elderly conducted by the Social and Economic Research Department of INRCA, Ancona, Italy. Transcripts of the interviews were analyzed through a (...) detailed discourse analysis within an ethnomethodological framework. Interview data are treated as interactional encounters that occasion members to display relevant aspects of their identities and morally adequate images of being a caregiver. In the interview interaction, interlocutors display an orientation towards the production of a moral order in which duty and responsibilities are allocated on the basis of gender distinction. Males are generally described as not being responsible for caring tasks, except for situations in which females are absent or sick, that is, for serious reasons. Caregivers'' perception of time dedicated to caring is pervasive. Most caregivers said it occupied all their time, but gender differences were noticeable. Caring tasks are recognized as gender specific practices, thus failing to carry out these tasks is morally sanctionable when women are involved, but not so for men. Many caregivers described caring for older relatives as an intense source of stress, involving serious physical and psychological problems. The study on moral and identity issues related to caregiving highlights endangering constructions of caring. (shrink)

Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress.

The emphasis on intra-family caregiving that prevailed from ancient until relatively recent times, in both philosophy and practice, was substantially displaced under the influence of the Eighteenth Century Enlightenment by an emphasis on individual independence. The ethics of familial relationships ceased to be at the center of philosophical interest. A consequence was growing inattention to the social conditions and practical arrangements needed to support family efforts to take care of the very young, the very old, the physically or (...) mentally ill or disabled, and others in need of care. The myth of the self-sufficient family must be exploded to permit the development of a public policy that will make such support possible. (shrink)

Some studies involving informal caregivers of oncology patients noted that family assessment is associated with their mental health. The objective of this study is to demonstrate such a dependency in relation to informal caregivers of oncology patients receiving home-based palliative care. This study is concerned with the dependency between family assessment (family cohesion, family flexibility, family communication, and satisfaction with family life) and perceived emotions, including stress. It comprised 109 Polish informal caregivers (34 men (...) and 75 women) of patients receiving palliative care at home. The study found that satisfaction with family life was a crucial predictor of positive emotions. This means that interventions aimed at improving satisfaction with family life may simultaneously affect the psychological functioning of informal caregivers of palliative oncology patients. Such interventions may serve to improve the quality of home-based palliative care both in regard to patients and caregivers. (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)

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)

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)