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Ethical issues in caring

The following resources examine ethical issues in caring.

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Preserving privacy for pediatric patients and families: use of confidential note types in pediatric ambulatory care

Objective: This study evaluates and characterizes the use of a confidential clinic note type as part of the implementation of open notes at a free-standing children's hospital. We describe how this electronic health record feature which disables patient and family access to selected notes in the patient portal is used across our institution, which clinicians are using this feature, and the type of data our clinicians consider confidential.

Materials and Methods: Through retrospective chart review, we have evaluated the use of a confidential note type over a 1-year period. 

Results: We identified 402 964 clinic notes created during a 1-year period, of which 9346 (2.3%) were flagged as confidential. Use of this confidential note type was associated with female patient sex and increase in patient age. It was used most frequently by a small subset of providers. 922 (83.8%) of 1100 notes manually reviewed contained sensitive information. Reasons for confidential notes varied, but patient's mental health was most commonly identified. 

Discussion: Our data demonstrate variability in the use of a confidential note type across specialties, patient ages, and types of confidential information. This note type is frequently utilized by a subset of providers who often manage sensitive patient and parent information. As vendors and institutions enable open notes, thoughtful implementation and provider education surrounding the use of this confidential feature is needed.

Conclusion: A confidential clinic note feature is an integral aspect of pediatric open notes implementation. This feature supports protection of confidential information pertaining to our patients and their caregivers. 

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Truth Telling in the Setting of Cultural Differences and Incurable Pediatric Illness: A Review

Importance: Navigating requests from parents or family caregivers not to disclose poor prognosis to seriously ill children can be challenging, especially when the requests seem culturally mediated. Pediatric clinicians must balance obligations to respect individual patient autonomy, professional truth telling, and tolerance of multicultural values. 

Observations: To provide suggestions for respectful and ethically appropriate responses to nondisclosure requests, we used a hypothetical case example of a Middle Eastern adolescent patient with incurable cancer and conducted an ethical analysis incorporating (1) evidence from both Western and Middle Eastern medical literature and (2) theories of cultural relativism and justice. While Western medical literature tends to prioritize patient autonomy and corresponding truth telling, the weight of evidence from the Middle East suggests high variability between and within individual countries, patient-physician relationships, and families regarding truth-telling practices and preferences. A common reason for nondisclosure in both populations is protecting the child from distressing information. Cultural relativism fosters tolerance of diverse beliefs and behaviors by forbidding judgment on foreign societal codes of conduct. It does not justify assumptions that all individuals within a single culture share the same values, nor does it demand that clinicians sacrifice their own codes of conduct out of cultural respect. We suggest some phrases that may help clinicians explore motivations behind nondisclosure requests and gently confront conflict in order to serve the patient's best interest.

Conclusions and Relevance: It is sometimes ethically permissible to defer to family values regarding nondisclosure, but such deferral is not unique to cultural differences. Early setting of expectations and boundaries, as well as ongoing exploration of family and health care professional concerns, may mitigate conflict.

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Family Strategies to Support Siblings of Pediatric Hematopoietic Stem Cell Transplant Patients

Objective: To describe the strategies families report using to address the needs and concerns of siblings of children, adolescents, and young adults undergoing hematopoietic stem cell transplant (HSCT).

Methods: A secondary semantic analysis was conducted of 86 qualitative interviews with family members of children, adolescents, and young adults undergoing HSCT at 4 HSCT centers and supplemented with a primary analysis of 38 additional targeted qualitative interviews (23 family members, 15 health care professionals) conducted at the primary center. Analyses focused on sibling issues and the strategies families use to address these issues.

Results: The sibling issues identified included: (1) feeling negative effects of separation from the patient and caregiver(s); (2) experiencing difficult emotions; (3) being faced with additional responsibilities or burdens; (4) lacking information; and (5) feeling excluded. Families and health care providers reported the following strategies to support siblings: (1) sharing information; (2) using social support and help offered by family or friends; (3) taking siblings to the hospital; (4) communicating virtually; (5) providing special events or gifts or quality time for siblings; (6) offering siblings a defined role to help the family during the transplant process; (7) switching between parents at the hospital; (8) keeping the sibling's life constant; and, (9) arranging sibling meetings with a certified child life specialist or school counselor.

Conclusions: Understanding the above strategies and sharing them with other families in similar situations can begin to address sibling issues during HSCT and can improve hospital-based, family-centered care efforts. 

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Caregiver burden in pediatric dialysis

In spite of improvements in expected survival, neurodevelopmental outcome, and quality of life, decision-making in neonatal dialysis remains controversial in high-resource countries. In part, this may be based upon the significant burdens experienced by the child, and also those experienced by the parents as caregivers. Emerging research offers a clearer description of the burdens experienced by dialysis caregivers worldwide. Caregiver burden represents an important area for nephrologists to advocate for patients and their families; however, nephrologists must also recognize the realities caregivers currently experience. Incorporation of caregiver burden into medical decision-making for children with end-stage kidney disease is necessary, but raises several ethical concerns.

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Feeling called to care: a qualitative interview study on normativity in family caregivers' experiences in Dutch home settings in a palliative care context

Background: Family caregivers, such as partners or other family members, are highly important to people who desire to stay at home in the last phase of their life-limiting disease. Despite the much-investigated challenges of family caregiving for a patient from one's direct social network, lots of caregivers persevere. Objectives: To better understand why, we aimed to specify how normative elements - i.e. what is considered good or valuable - shape family caregivers' experiences in Dutch home settings. Methods: From September 2017 to February 2019, a total of 15 family caregivers, 13 bereaved family caregivers, and 9 patients participated in one-time in-depth interviews. The data were qualitatively analyzed following a grounded theory approach. Results: Central to this study is the persistent feeling of being called to care. By whom, why, and to what? Family caregivers feel called by the patient, professionals entering normal life, family and friends, or by oneself; because of normative elements of love, duty, or family dynamics; to be constantly available, attentive to the patient while ignoring their own needs, and assertive in managing the caring situation. The prospect of death within the palliative care context intensifies these mechanisms with a sense of urgency. Conclusions: Our analysis showed a difference between feeling called upon in the caring situation on the one hand, and how caregivers tend to respond to these calls on the other. Taking into account the inherent normative and complex nature of family caregiving, the pressing feeling of being called cannot - and perhaps should not - simply be resolved. Caring might be something families just find themselves in due to being related. Rather than in feeling called upon per se, the burden of care might lie in the seeming limitlessness to which people feel called, reinforced by (implicit) social expectations. Support, we argue, should enable caregivers to reflect on what norms and values guide their responses while acknowledging that caring, despite being burdensome, can be a highly important and rewarding part of the relationship between partners or family members.

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Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers

Background: In Israel, caring for people with end-stage dementia confined to home is mainly done by home care units, and in some cases by home hospice units, an alternative palliative-care service. Because life expectancy is relatively unknown, and the patient’s decision-making ability is poor, caring for this unique population raises ethical dilemmas regarding when to define the disease as having reached a terminal stage, as well as choosing between palliative and life-prolonging-oriented care. Objectives: Exploring and describing differences and similarities of professional staff members’ (PSMs’) and family caregivers’ perceptions of caring for people with end-stage dementia in two different settings. Methods: Qualitative research, using semi-structured interviews analyzed through a thematic content–analysis approach. Participants: Sixty-four interviews were conducted (24 PSMs and 40 family caregivers) in two care-settings—home hospice unit and home care unit. Ethical considerations: The study was approved by the Ethics Committee (BBL00118-17). Findings: We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing “comfort” over “life-prolonging,” clarifying patients’ wishes and deciding whether or not to use artificial feeding. Discussion: Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants’ perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Conclusions: Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.

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Designing work with people living with dementia: Reflecting on a decade of research

The United Nations Universal Declaration of Human Rights is widely acknowledged as a landmark document in the history of human rights. Drafted by representatives from all over the world, the declaration was proclaimed by the United Nations General Assembly in Paris on 10 December 1948 (General Assembly resolution 217 A) as a common standard for all peoples and all nations. The declaration sets out a series of articles that articulate a number of fundamental human rights to be universally protected. Article 23 of the declaration relates to the right to work and states that people have a human right to work, or engage in productive employment, and may not be prevented from doing so. The right to work is enshrined in international human rights law through its inclusion in the International Covenant on Economic, Social and Cultural Rights, where the right to work emphasizes economic, social and cultural development. This paper presents ongoing research that highlights how a disruptive co-design approach contributes to upholding UN Article 23 through the creation of a series of innovative working practices developed with people living with dementia. The research, undertaken in collaboration with several voluntary and third sector organizations in the UK, looks to break the cycle of prevailing opinions, traditional mindsets, and ways-of-doing that tend to remain uncontested in the health and social care of people living with dementia. As a result, this research has produced a series of innovative work opportunities for people living with dementia and their formal and informal carers that change the perception of dementia by showing that people living with dementia are capable of designing and making desirable products and offering much to UK society after diagnosis. In this ongoing research, the right to continue to work for people living with dementia post-diagnosis in creative and innovative ways has clearly helped to reconnect them to other people, helped build their self-esteem, identity and dignity and helped keep the person with dementia connected to their community, thus delaying the need for crisis interventions. This paper reports on a series of future work initiatives for people living with dementia where we have used design as a disruptive force for good to ensure that anyone diagnosed with dementia can exercise their right to work and engage in productive and rewarding employment. 

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The Concerns and Experience of Decision-Making Regarding Do-Not-Resuscitate Orders Among Caregivers in Hospice Palliative Care

Background: A do-not-resuscitate (DNR) order is an important end-of-life decision. In Taiwan, family caregivers are also involved in this decision-making process. This study aimed to explore the concerns and experiences regarding DNR decisions among caregivers in Taiwan. Methods: Qualitative study was conducted. Convenience sampling was used, and 26 caregivers were recruited whose patients had a DNR order and had received hospice care or hospice home care. Semi-structured interviews were used for data collection, including the previous experiences of DNR discussions with the patients and medical staff and their concerns and difficulties in decision-making. The data analysis was based on the principle of thematic analysis. Findings: Four themes were identified: (1) Patients: The caregivers respected the patients' willingness and did not want to make them feel like "giving up." (2) Caregivers' self: They did not want to intensify the patients' suffering but sometimes found it emotionally difficult to accept death. (3) Other family members: They were concerned about the other family members' opinions on DNR orders, their blame, and their views on filial impiety. (4) Medical staff: The information and suggestions from the medical staff were foundational to their decision-making. The caregivers needed the health care professionals' supports to deal with the concerns from patients and other family members as well as their emotional reactions.

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Conceptualizations of consciousness and continuation of care among family members and health professionals caring for patients in a minimally conscious state

Background: The American Academy of Neurology recently emphasized the importance of communicating with patients' families to better reflect patient values in clinical care. However, little is known about how decisions about continuing rehabilitative care made by family caregivers and healthcare providers working with minimally conscious patients are informed by conceptualizations of consciousness and moral status. Methods: We explored these issues in interviews with 18 family caregivers and 20 healthcare professionals caring for minimally conscious patients. Data were analyzed using thematic content analysis. Results: Results suggest that family members and healthcare professionals share similar views of what consciousness is ("being there") and what it is indicated by ("a look in the eyes," and/or an "ability to do"/agency). They also share a belief that the presence (or "level") of consciousness does not determine whether rehabilitative care should be discontinued. Rather, it should be determined by considerations of suffering and well-being. Providers were more likely to view suffering as rationale for discontinuation of care, while family members viewed suffering as an indicator of and motivator for potential recovery. Conclusions: Findings can help optimize family-provider communications about minimally conscious patients by acknowledging shared assumptions and interpretations of consciousness, as well as key areas where perspectives diverge. Family and professional caregivers' interpretations of consciousness and suffering are implicated in decisions about continuing rehabilitation for minimally conscious patients. Family members and healthcare providers both rely to some extent on non-observable evidence to evaluate consciousness, which may be an adaptive and philanthropic response to clinical uncertainty. Acknowledging shared assumptions and interpretations of consciousness, as well as diverging perspectives, can help to optimize family-provider communications.

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Common ethical dilemmas of family caregivers of palliative patients in Indonesia

Background: Family caregivers, especially in Asian countries, have a profound role in caring for a sick family member. However, there are wide variations between the Asian and western world in terms of culture and facilities. Therefore, the problems and needs of family caregivers between those two regions may also be distinct, and it is important to explore and elaborate based on our empirical evidence. In Indonesia, motives and values in caregiving and religion become the wheel-power of the family caregivers in providing care. This affects action and consequences for caregivers. Aims: This paper attempts to elaborate on common ethical dilemmas that usually face by family caregivers in Indonesia. Conclusions: Unfortunately, family caregivers typically are not prepared to make those challenging decisions. Therefore, we recommend not only that family caregivers need to be involved in the caring process, but also their issues and ethical dilemmas should be assessed and addressed by health care professionals, especially nurses, who have the most frequent contact with patient and family caregiver. 

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Why Older Adults and Their Children Disagree About In-Home Surveillance Technology, Sensors, and Tracking

Background and Objectives Despite the surveilling nature of technologies that allow caregivers to remotely monitor location, movements, or activities, the potential differences in comfort with remote monitoring between caregivers and care recipients have not been examined in depth. On the dyad and aggregate level, we compare preferences of older adult women and their adult children for three remote monitoring technologies. Their assessments of each technology's impact on privacy, safety, independence, freedom, relationship with family member, social life, and identity are also compared. Research Design and Methods This dyadic study used cognitive-based interview probing and value-centered design methods. Twenty-eight individual, in-depth, structured interviews were conducted with 18 women who are Meals on Wheels clients and 10 of their adult children. Results Meals on Wheels participants reported multiple chronic conditions and an average of 1.7 ADL and 3.3 IADL difficulties; two thirds were enrolled in Medicaid. Adult children preferred each technology more than their mothers did and underestimated both their mothers' ability to comprehend the functions of the technologies and the importance of engaging them fully in decision making. Most were confident that they could persuade their mothers to adopt. For both groups, privacy was the most-cited concern, and participants perceived significant overlap between values of privacy, independence, identity, and freedom. Discussion and Implications Studying privacy in isolation overlooks privacy's instrumental role in enabling other values. Shared decision-making tools are needed to promote remote monitoring use consistent with older adults' values and to prevent conflict and caregiver overreach.

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Who Cares About Care? Family Members as Moral Actors in Treatment Decision Making

The article focuses on the discussion by highlighting the role of family members as moral actors within and beyond the hospital setting. Topics include the commentary draws on concepts of intersectoral care and family ethics as well as on our own research in the long-term home care setting, the background of demographic changes and shifts in morbidity structures, and the family caregivers often accept care takeover without hesitation.

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Beliefs of Israeli Family Caregivers of People with Dementia toward Advance Care Planning

Family caregivers of people with dementia often must make crucial medical decisions for them that may increase the burden of care experienced. Although undertaking Advance Care Planning (ACP) might reduce their decision-making burden, completion rates remain very low. The present study aimed to explore the common beliefs of family caregivers of people with dementia about undertaking ACP for themselves. A qualitative study was conducted, using a semi-structured questionnaire based on the Theory of Planned Behavior. Face-to-face interviews were conducted with a convenience sample of 20 family caregivers of people with dementia in Israel. The behavioral beliefs expressed by the participants referred to the dual benefits of ACP, for the person who will not be able to make medical decisions at the end of life and for themselves. Participants mentioned that family members and friends were the main persons with whom they would consult in making decisions regarding ACP. Personal characteristics and instrumental factors were mentioned as enablers and barriers to undertaking ACP. Findings from the study provide an important basis for expanding research and for developing interventions that can encourage undertaking ACP.

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Ethical challenges in family caregivers of patients with advanced cancer - A qualitative study

Background: Caring for patients with advanced or terminal diseases can confront family caregivers (FC) with ethical challenges. The present study aims at tracing paths connected to ethical challenges among FC of advanced cancer patients by exploring morally troubling situations and related burden, as well as strategies to handle the situation and experience of moral distress from the grieving FC's perspective. Methods: Within a qualitative design, interviews with 12 grieving FC were conducted using a semi-structured interview guide. Data were analysed using grounded theory and abductive reasoning. Results: Core phenomena identified were two paths connected to ethical challenges among FC. Ethical challenges occurred in the context of difficult decision-making (Path 1) and in the context of lacking decision-making options when no decision was to be made by FC (Path 2). We found each path to be triggered by distinct sets of morally troubling situations that occurred during the patient's disease trajectory. In the course of difficult decision-making (Path 1), detrimental external factors could add emotional stress, thus making the decision-making process burdensome. FC used various proactive strategies to overcome those detrimental factors and/or to make the decision. Decisions in conflict with FCs' own moral expectations and values led to moral distress, generating painful emotions. When no decision was to be made by FC (Path 2), FC felt powerless and overrun, which was associated with major emotionality in terms of anxiety and confusion. Either detrimental factors aggravated these feelings to paralyzing shock, or internal resources enabled FC to accept the situation. While acceptance prevented moral distress, paralyzing shock often caused a sense of not meeting their their own moral expectations and values, resulting in moral distress. In both paths, factors were identified that helped FC finding closure and prevented moral residue. Nevertheless, some FC experienced residual moral distress months after the morally troubling situation had occurred. Conclusion: Findings provide first information towards understanding paths leading to ethical challenges in FC and can help clinicians to minimize associated emotional burden and moral distress. 

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Making Decisions About Long-Term Institutional Care Placement Among People With Dementia and Their Caregivers: Systematic Review of Qualitative Studies

BACKGROUND AND OBJECTIVES: People with dementia become increasingly dependent on others for care as cognition declines. Decision making about placement of people with dementia into long-term institutional care can be emotionally complex. The objective of this review is to describe experiences and perspectives of people with dementia and their family caregivers in making decisions about institutional care placement. RESEARCH DESIGN AND METHODS: MEDLINE, Embase, PsycINFO, and CINAHL were searched from inception to August 2018. Thematic synthesis was used to analyze results. RESULTS: We included 42 studies involving 123 people with dementia and 705 family caregivers from 12 countries. We identified five themes: ensuring safety (avoiding injury due to frailty, protecting against dangerous behaviors, preventing aggressive encounters), reaching breaking point (insufferable burden of caregiving, needs exceeding capabilities, intensifying family conflict, loneliness and isolation, straining under additional responsibilities, making extreme personal sacrifices), vulnerability in lacking support (ill-prepared for crisis, unable to access professional expertise, unpredictable prognostic trajectory, uncertainty navigating health care services, pressured by limited placement opportunities, high cost of placement, resenting loss of autonomy), avoiding guilt of abandonment (sharing accountability, mitigating against disagreement and stigma, reluctance to relinquish caregiving, seeking approval), and seeking reassurance and validation (preserving personhood and former identity, empowerment through engagement, assurance of care quality, acceptance from other care residents). DISCUSSION AND IMPLICATIONS: People with dementia and family caregivers feel vulnerable, disempowered, and guilty in decision making about institutionalization. Person-centered communication and support strategies that foster confidence and reassurance are needed to assist people with dementia and caregivers to make decisions about placement into long-term institutional care settings. 

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Primary Family Caregivers' Reasons for Disclosing Versus Not Disclosing a Cancer Diagnosis in India

Background Nondisclosure of cancer diagnosis continues to be practiced in India, with many family caregivers concealing it from patients in order to protect them from emotional distress. Objective The aim of this study was to explore Indian primary family caregivers' reasons for, and experiences of, disclosure versus nondisclosure to patients about their cancer diagnosis. Methods Indian disclosing (n = 8) and nondisclosing (n = 7) primary family caregivers participated in semistructured interviews exploring their reasons for disclosure versus nondisclosure of cancer diagnosis to their patient. Qualitative content analysis was used to classify the reasons for and for not disclosing. Illustrative quotes were selected to highlight caregivers' motivations for, and experiences of, each reason. Results The findings revealed 6 main reasons for disclosing (emotional well-being, lack of control, preparing the patient, family reasons, patient's personality, and longevity/curability of the disease) and 6 reasons for not disclosing (emotional well-being, family reasons, patient's personality, longevity/curability of the disease, barriers to communication, and disease severity). Typically, disclosing caregivers considered reasons for as well as against disclosure, whereas nondisclosing caregivers considered reasons against disclosure. Conclusions Most of the reasons given for disclosing and not disclosing were the same, although these reasons operated differently for disclosing and nondisclosing caregivers. In addition, justification for these reasons demonstrated cognitive consistency effects that appeared to reduce any feelings of dissonance regarding caregivers' disclosure, or nondisclosure, decisions. Implications for Practice Cancer nurses should provide additional psychological support to nondisclosing caregivers, especially with regard to how they view and engage in their caregiving role.

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Separation characterized by responsibility and guilt: Family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities

Aim and objectives: The aim of this study was to explore family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities. Background: Dementia not only affects individuals but also affects and changes the lives of close family members. An increasing number of dementia-related deaths occur in long-term care facilities; therefore, it is critical to understand how healthcare professionals support and care for residents with dementia and their families at the end of life. Design: A qualitative design with a phenomenological approach was adopted. Methods: In-depth interviews were performed with 10 family caregivers of residents in 3 Norwegian long-term care facilities. Results: The family caregivers’ experiences with palliative care for a close family member with severe dementia in long-term care facilities were characterized by responsibility and guilt. Admission to a long-term care facility became a painful relief for the family caregivers due to their experiences with the poor quality of palliative care provided. The lack of meaningful activities and unsatisfactory pain relief enhanced the feelings of responsibility and guilt among the family caregivers. Despite the feelings of insecurity regarding the treatment and care given during the early phase of the stay, the family caregivers observed that their close family member received high-quality palliative care during the terminal phase. The family caregivers wanted to be involved in the care and treatment, but some felt that it became a heavy responsibility to participate in ethical decision-making concerning life-prolonging treatment. Conclusions: The family caregivers experienced ongoing responsibility for their close family members due to painful experiences with the poor quality of the palliative care provided. When their expectations regarding the quality of care were not met, the palliative care that was offered increased their feeling of guilt in an already high-pressure situation characterized by mistrust. 

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Beware of Discharge: A Case Exploring the Ethics of Societal Expectations Placed on Family at Hospital Discharge

As the population ages and medical therapies advance, more individuals are living in the community with complex health conditions. These individuals, as well as their clinicians, often assume their family members and friends will be capable of, and willing to, provide the caregiving work necessary to continue living at home. There is an ethical problem in this assumption that unpaid community care will be provided by family or friends. Using the Hunt and Ells Patient-Centered Care Ethics Analysis Model for Rehabilitation (2013), this article explores the ethical considerations involved in the hospital discharge planning of a fictional case involving a middle-aged, male stroke patient who is in a strained marriage. We discuss the ethical merits and concerns of the various discharge options. We conclude with recommendations to avoid assumptions that family or friends will provide unpaid care after a hospital discharge. We share advocacy suggestions for improving community supports for caregivers and those with long-term care needs.

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To Tell or Not to Tell: Exploring the Preferences and Attitudes of Patients and Family Caregivers on Disclosure of a Cancer-Related Diagnosis and Prognosis

PURPOSE: To understand the preferences and attitudes of patients and family caregivers on disclosure of cancer diagnosis and prognosis in an Indian setting. METHODS: Overall, 250 adult patients with cancer and 250 family caregivers attending the outpatients of a tertiary cancer hospital for the first time were recruited purposively. The mean ages of patients and caregivers were 49.9 years (range, 23-80 years) and 37.9 years (range, 19-67 years), respectively. Separately, they completed prevalidated, close-ended preference questions and were interviewed for open-ended attitude questions. RESULTS: A total of 250 adult patients (response rate, 47.17% overall, 73.2% in men, and 26.8% in women) and 250 family caregivers (response rate, 40.65% overall, 84.0% in men, and 16.0% in women) participated. Significant differences were observed in the preference to full disclosure of the name of illness between patients (81.2%) and caregivers (34.0%) and with the expected length of survival between patients (72.8%) and caregivers (8.8%; P <.001). The patients felt that knowing a diagnosis and prognosis may help them be prepared, plan additional treatment, anticipate complications, and plan for future and family. The caregivers felt that patients knowing a diagnosis and prognosis may negatively affect the future course of illness and cause patients to experience stress, depression, loss of hope, and confidence. CONCLUSION: Patients with cancer preferred full disclosure of their diagnoses and prognoses, whereas the family caregivers preferred nondisclosure of the same to their patients. This novel information obtained through a large study with varied participants from different parts of the country will help formulate communication strategies for cancer care. 

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Perspectives on decision making amongst older people with end‐stage renal disease and caregivers in Singapore: A qualitative study

Background: End‐stage renal disease (ESRD) is increasing both globally and in Asia. Singapore has the fifth highest incidence of ESRD worldwide, a trend that is predicted to rise. Older patients with ESRD are faced with a choice of haemodialysis, peritoneal dialysis or conservative management, all of which have their risks and benefits. Objective: This study seeks to explore perspectives on decision making amongst older (≥70) Singaporean ESRD patients and their caregivers to undergo (or not to undergo) dialysis. Design: Qualitative study design using semi‐structured interviews. Setting and participants: Twenty‐three participants were recruited from the largest tertiary hospital in Singapore: seven peritoneal dialysis patients, five haemodialysis patients, four patients on conservative management and seven caregivers. Results: While some patients believed that they had made an independent treatment decision, others reported feeling like they had no choice in the matter or that they were strongly persuaded by their doctors and/or family members to undergo dialysis. Patients reported decision‐making factors including loss of autonomy in daily life, financial burden (on themselves or on their families), caregiving burden, alternative medicine, symptoms and disease progression. Caregivers also reported concerns about financial and caregiving burden. Discussion and conclusion: This study has identified several factors that should be considered in the design and implementation of decision aids to help older ESRD patients in Singapore make informed treatment decisions, including patients' and caregivers' decision‐making factors as well as the relational dynamics between patients, caregivers and doctors. 

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The influence of individualistic and collectivistic morality on dementia care choices

Background: If collectivistic-oriented family carers choose professional care for dependents with dementia, they risk being stigmatised as failing their obligation. This may influence dementia care choices. Research question: How may individualistic and collectivistic values influence choices in dementia care? Method: Qualitative design with in-depth interviews with a total of 29 nurses, 13 family members in Norway and the Balkans and 3 Norwegian dementia care coordinators. A hermeneutic content-focused analysis was used. Ethical considerations: Ethical approval was obtained from the Regional Ethics Committee for Research, South-Eastern Norway, and the nursing homes' leadership. Findings: Family domain reasons why institutionalisation of dependents with dementia was seen as a last resort: obligation towards family members, particularly parents; worry about other family members' reactions and inability to cope with the care for the person with dementia. Social domain reasons: feelings of shame and stigma regarding dementia, particularly in connection with institutionalisation of family members. Discussion: Children's obligation towards their parents is an important aspect of the morality of collectivistic societies. Institutionalising parents with dementia may cause feelings of guilt and shame and worry about being stigmatised and ostracised. To avoid blame and rejection, caregiver(s) try to keep the fact that family members have dementia 'in the family'. The decision to accept professional healthcare for dependents with severe dementia or have them admitted to a geriatric institution was postponed as long as possible. Conclusion: Family care morality may constitute a significant barrier against seeking professional help for persons with dementia, a barrier based on the expectation that the family will care for their old, even when suffering from severe dementia. Hence, stigma and shame may significantly affect the provision of care. Culturally tailored information may encourage family carers to seek professional help before the disruptive influence of the disease makes institutionalisation the only feasible option.

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Experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life

Purpose: This study aimed to clarify the experiences of caregivers desiring to refuse life-prolonging treatment for their elderly parents at the end of life. Methods: A semi-structured interview was performed for four family caregivers who wanted to refuse life-prolonging treatment suggested by the physicians. Results: In this study, four caregivers who refused life-prolonging treatment suggested by the physicians for their elderly parents completed semi-structured interviews. The obtained data were analyzed in relation to the theme "Experiences of caregivers who desire to refuse life-prolonging treatment for their elderly parents at the end of life." As a result, 38 subcategories and 12 categories were extracted. Conclusions: Participants in this study initially had a negative view of life-prolonging treatment. However, they agonized over the decision when they received conflicting advice from the physicians. The participants indicated that physicians' advice and attitudes complicated their decisions to reject life-prolonging treatment for their elderly parents.

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Effect of the Integrated Prospective Payment Program on Family Members' Knowledge and Acceptance of Hospice Care of Patients on Prolonged Mechanical Ventilation

Background: We sought to evaluate the effect of an integrated prospective payment program (IPP) on knowledge of hospice care and willingness to participate in hospice care among family members of patients on prolonged mechanical ventilation (PMV).; Methods: Between November 2013 and April 2014, we used paper-based survey questionnaires from 64 institutions to evaluate knowledge, willingness, and related factors among the main caregivers of patients on PMV regarding hospice care and to determine whether their decisions for the patients were affected by the IPP.; Results: The average ages of the respondents and patients on PMV were 51.9 y and 70.8 y respectively; 70.6% of the respondents knew about the Hospice Palliative Care Act (HPCA), and 42.3% of the medical staff had introduced hospice care-related information to patients and caregivers in Taiwan. Among the caregiver respondents, 67.6% agreed to write a letter of intent regarding the choice of hospice care or limited life-sustaining treatment. In total, 66.2% (16.1 + 50.1%) of the respondents agreed to hospice care for their family members (ie, the patients on PMV) when the condition was terminal. The factors of greater HPCA knowledge among the patients on PMV were IPP participation, female sex, and coma status. Factors leading to higher levels of HPCA knowledge included age ≥ 65 y being married, higher income, awareness of the law, and being introduced to hospice care by medical staff.; Conclusions: High levels of hospice care knowledge were unrelated to willingness to participate. HPCA knowledge was greater in the IPP group than in the non-IPP group; however, there was no significant difference in the willingness to agree to hospice care. It is recommended that individuals be encouraged to express their medical decisions.

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Struggling for a dignifying care: experiences of being next of kin to patients in home health care

Background Home healthcare services are becoming more complex as a result of changing demographics in society and patients having multiple health problems requiring advanced nursing care. Next of kin often experience that they put their own life on hold, and may feel that they stand alone when life takes an unexpected turn. Aim The aim of this study was to explore next of kin's views of dignity in home healthcare services. Methods This study has a qualitative approach and content analysis was applied. The purposeful sample consisted of next of kin to patients who received services from home healthcare or in nursing homes (n = 11). One focus group was conducted in 2016. Results Five themes emerged from the data analysis concerning struggling for a dignifying care in home healthcare services: Indignity implies double vulnerability, desire for respect and recognition, experiencing responsibility for a dignifying life, undignifying care due to lack of competence, and the home as a common sanctuary is gradually lost. Conclusions This study highlights the importance of ensuring dignity in care for patients living at home. Next of kin should be seen as a partner with the need for recognition and support. Maintaining human dignity for loved ones requires competence, respect and recognition.

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The legal, governance and ethical implications of involving service users and carers in research

Purpose Service user and carer involvement in all aspects of the health and care research process, from co-applicant on funding applications to active engagement in a research study, is now a requirement for most research funders. However, as co-production increases and service users and carers take on more responsibilities, this involvement has legal, governance and ethical implications. The purpose of this paper is to raise awareness of the issues and consider potential solutions. Design/methodology/approach Experiences of engagement as co-applicants in research funding applications, of involvement as research study team members, and as co-researchers were gathered from a range of service user and carer experts. Consultation and a workshop gathered further evidence from a range of stakeholders across the research management community. Findings Service users and carers, who contribute to the research protocol and process, feel a strong sense of responsibility to ensure the high quality of a research study. However, they may be new to their roles, status and key responsibilities when acting as project team members, co-researchers or co-applicants engaging in funding applications. The responsibility of sponsors, grant holding organisations, funders and other members of the research community is to communicate with and support service users and carers in those roles. More needs to be done to understand the contractual, a legal and governance issues and responsibilities that are specific to service user and carer co-applicants, project team members and co-researchers, from both an organisational and individual service user and carer perspective. Practical implications The implications of the findings are to raise awareness of the practical, legal and ethical issues arising from this type of involvement and the potential risks arising from lack of cohesion or understanding. The review also highlights the concerns and barriers service users and carers may find in becoming involved. Originality/value The findings highlight a range of issues for research regulators, sponsors and investigators to consider to ensure service users and carers can fulfil their responsibilities and be supported in doing so.

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Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience (EMPOWER) among Surrogate Decision-Makers of ICU Patients: study protocol for a randomized controlled trial

Background: Critical illness increases the risk for poor mental health outcomes among both patients and their informal caregivers, especially their surrogate decision-makers. Surrogates who must make life-and-death medical decisions on behalf of incapacitated patients may experience additional distress. EMPOWER (Enhancing & Mobilizing the POtential for Wellness & Emotional Resilience) is a novel cognitive-behavioral, acceptance-based intervention delivered in the intensive care unit (ICU) setting to surrogate decision-makers designed to improve both patients' quality of life and death and dying as well as surrogates' mental health. Methods: Clinician stakeholder and surrogate participant feedback (n = 15), as well as results from an open trial (n = 10), will be used to refine the intervention, which will then be evaluated through a multisite randomized controlled trial (RCT) (n = 60) to examine clinical superiority to usual care. Feasibility, tolerability, and acceptability of the intervention will be evaluated through self-report assessments. Hierarchical linear modeling will be used to adjust for clustering within interventionists to determine the effect of EMPOWER on surrogate differences in the primary outcome, peritraumatic stress. Secondary outcomes will include symptoms of post-traumatic stress disorder, prolonged grief disorder, and experiential avoidance. Exploratory outcomes will include symptoms of anxiety, depression, and decision regret, all measured at 1 and 3 months from post-intervention assessment. Linear regression models will examine the effects of assignment to EMPOWER versus the enhanced usual care group on patient quality of life or quality of death and intensity of care the patient received during the indexed ICU stay assessed at the time of the post-intervention assessment. Participant exit interviews will be conducted at the 3-month assessment time point and will be analyzed using qualitative thematic data analysis methods. Discussion: The EMPOWER study is unique in its application of evidence-based psychotherapy targeting peritraumatic stress to improve patient and caregiver outcomes in the setting of critical illness. The experimental intervention will be strengthened through the input of a variety of ICU stakeholders, including behavioral health clinicians, physicians, bereaved informal caregivers, and open trial participants. Results of the RCT will be submitted for publication in a peer-reviewed journal and serve as preliminary data for a larger, multisite RCT grant application. Trial registration:, NCT03276559. Retrospectively registered on 8 September 2017.

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Impact of medical assistance in dying (MAiD) on family caregivers

Medical assistance in dying (MAiD) is a globally polarising topic which often sparks debate surrounding the ethical and moral dilemmas that arise with a life-ending intervention. To gain a better understanding of this intervention, it is important to explore the experience of those most intimately affected by MAiD. Family caregivers of those with a terminal illness are the backbone of the healthcare and support team, often providing a substantial amount of informal care while at the same time coping with their own distress and anticipatory grief. However, we know the least about how MAiD impacts the psychosocial well-being of these same individuals. The aim of this article is to explore the experience of MAiD from the family caregiver perspective, namely their beliefs and opinions about the intervention, how the process of MAiD impacts them, how the intervention shapes their view of their loved one's quality of death, and the psychosocial outcomes after the passing of their loved one. Beyond the literature, challenges within both the clinical and research realms will be discussed and future directions will be offered. While MAiD is currently legal in only a small number of countries, a better understanding of the impact of MAiD will help inform policy and legislation as they are developed in other jurisdictions. Further, this article aims to inform future research and clinical interventions in order to better understand and support those seeking MAiD and their families.

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Ethical challenges in primary care: a focus group study with general practitioners, nurses and informal caregivers

Background: General practitioners (GPs), nurses and informal caregivers are often jointly involved in healthcare situations in which ethical issues play an important role.; Objectives: To describe ethical problems from the perspective of these three groups and to investigate whether there is a common experience of ethical issues in primary care.; Methods: We conducted six focus groups with general practitioners, nurses and informal caregivers in Germany. We asked the participants to describe at least one experience of ethical problem in detail and documented the findings by an illustration software that visualized and structured the discussion. We used thematic analysis to identify ethical problems and to develop categories of ethical issues.; Results: Problems reported barely overlapped. GPs had to do mainly with uncertainty about the scope and limits of their responsibility for patients. Nurses were concerned about bureaucratic and other barriers to professional care and about dual loyalty if they had to consider the conflicting interests of patients and family members. They often felt powerless and unable to act according to their professional standards. Informal caregivers reported problems that resulted from role strain and being both a family member and a caregiver. GPs, nurses and informal caregivers sometimes perceived the other parties as a source of ethical problems.; Conclusions: All parties may benefit from ethics support services, a rarity in German primary care so far. Furthermore, nurses' self-confidence towards GPs, demanding patients and family members has to be strengthened. Informal caregivers, the most vulnerable group, need more attendance and tailored support.

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Sacrifice: A care-ethical reappraisal of sacrifice and self-sacrifice by Inge van Nistelrooij

Widespread injustice in care work means that sacrifice has not been a cherished norm in the ethics of care. Inge van Nistelrooij contests this thinking in her new book, where she contemplates how sacrifice might constitute care in valuable ways, and how it is a hermeneutically useful metaphor for conceptualising care.

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Imagining care: Responsibility, dependency, and Canadian literature by A. DeFalco

In Imagining care: Responsibility, dependency, and Canadian literature, Amelia DeFalco explores the ways in which both fictional and personal-biographical Canadian narratives can enhance our understanding of the thorny issues associated with care – the dangers, liabilities and contradictions that often inhere in caregiving efforts and relations of care. In consideration of the common, concrete circumstances in which ordinary individuals find themselves providing unanticipated, non-professional forms of (private) care to their children, parents, other family members or friends, DeFalco exposes gaps in ethics of care philosophical theory in which challenging issues, such as inconsistencies, shortcomings and breakdowns of care, are often absent, overlooked, discounted or left largely unaddressed

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Engaging men as fathers and caregivers: an entry point to advancing women's empowerment and rights

Engaging men and boys to do unpaid care work is key to achieving gender justice. This article argues that caregiving programmes with men can be effective and serve as an entry point to engage men as allies for feminist agendas. There is a need to increase the uptake and scale-up of such initiatives, while ensuring quality, local contextualisation and ownership, and full accountability to women and girls. Furthermore, such programmes must be connected with efforts to advance women's economic empowerment and rights, challenge social norms around caregiving, transform institutions, and be combined with progressive national policies to recognise, reduce and redistribute unpaid care work.

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An ethics of care research manifesto

Participatory methodologies are frequently used in social research and have matured over the past decades. Ethical aspects of participatory research feature in retrospective accounts of partnerships that contribute to quality research, and those that were problematic to negotiate in the research partnership. Meanwhile, social researchers have shared concerns about meaningful transformations from research and the processes involved to achieve effective, responsive partnerships. As participatory methodologies have matured, so has an ethics of care. An ethics of care research manifesto provides a framework for surfacing marginalisation and the potential for transformation, considering interdependencies, and negotiating research relationships with the broader research community.

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Interrogating theories of care in the Indian context

Nussbaum's capabilities approach highlights the need for integrating vulnerability, dependency and care work with liberal principles of individuality and rationality. However, capabilities offer a statist, juridical and formal model of objectified care, whose adoption would lead to greater paternalism, especially in the context of public welfare institutions in India. This article argues that one needs to move beyond liberal theory, while engaging with vulnerability and care work in institutional contexts. It defends informal care as a multilayered practice in public sector institutions in India, to which deliberation is central. It acknowledges the inevitability of flexibility, interdependence, plurality and particularity in informal caregiving practice.

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A caring welfare state in South Korea: challenges and prospects

The purpose of this article is to examine the implications of care ethics in a Korean welfare state. It shows how Confucianism, developmentalism and neoliberalism can both promote and restrict the establishment of a Korean caring welfare state. Despite the fact that these Korean contexts can either support or undercut the development of a caring welfare state, it is clear that none of these contexts places particular importance on the value of care and care relationships. In the Confucian and neoliberal contexts, care is a family or private issue, while developmentalism fails to appreciate care due to its prioritisation of economic development.

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Commentary on the paper 'Dementia diagnosis and white lies: a necessary evil for carers of dementia patients?'

‘Thou shalt not lie’; ‘the truth, the whole truth, and nothing but the truth’. Both morality and the law contain clear statements about the importance of veracity. Yet, as Ginny Russell so eloquently describes, based upon personal experience with her mother in the UK, truth telling in dementia is fraught with problems. The problems are not only ethical, but can also be practical and emotional. They can arise on a daily basis for the family and friends of people with dementia, as well as for care staff and professionals. The author’s conclusion about lying as ‘a necessary evil’ can be viewed as a pragmatic resignation to a complex issue. This is a place many people reach following a difficult journey involving challenges and compromises to their values, beliefs, integrity and (for practitioners) aspects of their professionalism. Yet, perhaps there is a way of framing ‘non-truth telling’ in a more positive way, without ignoring the dilemmas that it inherently contains.

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Dementia diagnosis and white lies: a necessary evil for carers of dementia patients?

I am the daughter and one of the main carers for my 90-year-old mother. My mother was diagnosed with dementia in 2015. In this article, I reflect on dealing with my mother's progressive disability, with a focus on one experience. I explain why I believe withholding the truth is sometimes an acceptable, or even a preferable, course of action. The article illustrates how differing advice and lack of guidance about dementia diagnosis and 'truth-telling' play out in practice.

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The Trial of Ascertaining Individual Preferences for Loved Ones' Role in End-of-Life Decisions (TAILORED) Study: A Randomized Controlled Trial to Improve Surrogate Decision Making

Context Patients with terminal illnesses often require surrogate decision makers. Prior research has demonstrated high surrogate stress, and that despite standards promoting substituted judgment, most patients do not want their surrogates to make pure substituted judgments for them. It is not known how best to help loved ones fulfill the surrogate role. Objectives To test the effectiveness of an intervention to help surrogate decision makers. Methods One hundred sixty-six patients (41% with amyotrophic lateral sclerosis and 59% with gastrointestinal cancers) and their surrogates at two university medical centers were randomized to an intensive nurse-directed discussion of the end-of-life decision control preferences of the patient (TAILORED) or a discussion of nutrition (CONTROL) 163 completed baseline interviews and underwent the intervention. Results Twelve patients died during follow-up and 137 dyads completed the study. Post-intervention, using all available data, TAILORED patients and surrogates became more likely to endorse mutual surrogate decision making, that is, a balance of their own wishes and what the surrogate thinks best (adjusted odds compared with baseline for patients = 1.78, P = 0.04 adjusted odds for surrogates = 2.05, P = 0.03). CONTROL patients became 40% less likely to endorse mutual surrogate decision making (P = 0.08), and CONTROL surrogates did not change significantly from baseline (adjusted odds = 1.44, P = 0.28). Stress levels decreased for TAILORED surrogates (impact of events scale = 23.1 ± 14.6 baseline, 20.8 ± 15.3 f/u, P = 0.046), but not for CONTROL (P = 0.85), and post-intervention stress was lower for TAILORED than CONTROL (P = 0.04). Surrogates' confidence was uniformly high at baseline and did not change. Caregiver burden (Zarit) increased from 12.5 ± 6.5 to 14.7 ± 8.1 for TAILORED (P < 0.01), while not changing for CONTROL, yet satisfaction with involvement in decision making was higher at follow-up for TAILORED than for CONTROL (71% vs. 52%, P = 0.03). Conclusion TAILORED patients and surrogates who completed the study adopted a more mutual decision-making style, balancing their own wishes with what the surrogate thinks would be best for them. Surrogates reported less stress and more satisfaction. Confidence was high at baseline and did not change. There was a modest increase in caregiver burden. These findings suggest that interventions like TAILORED might positively impact surrogate decision making.

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Attitudes towards euthanasia in the context of fear of death among physiotherapists and caregivers of patients with paresis

Background: The permissibility of euthanasia raises many moral dilemmas, dividing the general public on this matter. Attitudes towards euthanasia depend on socio-cultural (age, beliefs) and individual factors (personality traits or working in medical professions). Aim of the study: The aim of the study was to establish attitudes towards euthanasia and the level of anxiety before death among people in close contact with persons suffering from paresis. The hypotheses assumed that contact with disabled patients, who require constant care, and the type of such contact, modify the perceived fear of death and attitudes towards euthanasia. Material and methods: Two clinical groups were involved in the study: physiotherapists dealing with stroke rehabilitation, family caregivers permanently taking care of close relatives of cerebral stroke survivors. The results of the two groups were compared to those of the control group, who were individuals with no personal experience in the care of patients with paresis. Attitudes towards euthanasia were measured in three dimensions: information support, liberal attitudes and conservative attitudes. Results: The results showed no intergroup differences in two dimensions: liberal attitude and the fear of death. Physiotherapists were the least conservative in their attitudes in comparison to other participants and they appreciated the information support more than participants from the control group. Conclusions: The results indicated that everyday contact with the patients suffering from paresis can increase conservative attitudes toward euthanasia but only among caregivers. (English)

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Cancer diagnosis disclosure preferences of family caregivers of cancer patients in Egypt

Objective: Family caregivers (FCs) of cancer patients are frequently seen as a barrier to honest communication with patients in Egypt. This study was conducted to investigate the attitude of FCs of cancer patients toward cancer diagnosis disclosure (CDD) and its determinants.; Methods: A structured interview was used to assess the preferences of 288 FCs regarding CDD.; Results: According to the FCs, 85% of patients were aware of their diagnosis. The majority (81%) of FCs preferred CDD to patients. In case they developed cancer, 92% of FCs wanted to know their diagnosis and 88% wanted to inform their families. In a univariate analysis, factors associated with FCs' negative attitude toward CDD to patients were as follows: patient's lower level of education (P = .001), patient's rural residence (P < .001), hematological malignancies (P < .001), FC's belief that the patient is unaware of diagnosis (P < .001), FC's unwillingness to know his/her own cancer diagnosis (P < .001), and FC's unwillingness to inform his/her family about his/her cancer diagnosis (P < .001). Only 2 factors predicted independently the negative attitude of FCs toward CDD, the FC's belief that the patient is unaware of diagnosis (P < .001), and the FC's unwillingness to know his/her own cancer diagnosis (P = .049).; Conclusions: The results suggest that the majority of FCs of Egyptian cancer patients prefer CDD to patients. The finding that the vast majority of FCs of aware patients preferred CDD suggests that the reaction of Egyptian patients to CDD is acceptable by FCs. Family caregivers with a negative attitude toward CDD may be reflecting their own fears.; Copyright © 2016 John Wiley & Sons, Ltd.

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Who cares and how much: exploring the determinants of co-residential informal care

The importance of informal care provided inside the household (co-residential care) is widely acknowledged in policy circles. However, the factors that determine the likelihood and scale of provision are not fully understood. A two-part model (2PM) is used to investigate both participation and levels of provision. Random effects dynamic panel specifications are employed. Results show that co-residential informal care competes with other time demanding activities, such as childcare and employment. Wealthier individuals are less likely to be caregivers, whereas wealthier households have a higher tendency towards caregiving. Evidence of both substitution and complementarity is found between formal and informal care. Informal care and health status are significantly related, with carers more likely to report worse General Health Questionnaire scores than non-carers. Finally, significant dynamic effects are observed with the continuance of the provision of informal care being more likely than the initiation of such activity, while heavy commitment in the past increases the hours provided in the current period.

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Memories, identity and homeliness: the social construction of mealtimes in residential care homes in South Wales

Mealtimes in residential care homes are fundamentally social occasions, providing temporal structure to the day and opportunities for conversation and companionship. Food and drink are imbued with social meanings and used to express and create relationships between people. There is a dearth of research exploring care home residents' mealtime experiences in the United Kingdom. This paper reports on particular findings from a qualitative study which investigated factors influencing nutritional care provided to residents in two different types of residential care settings in South Wales, UK. Data were generated through focus group interviews with relevant staff members (N = 15), individual interviews with managers (N = 4) and residents (N = 16) of the care homes and their informal carers (N = 10), observation of food preparation and mealtimes throughout the day, and analysis of appropriate documents. Data were analysed using thematic analysis. This paper's focus is on the ways in which care home residents' experiences and understandings of mealtimes were influenced by various environmental factors, such as the home's geographical location, physical lay-out and ambience. Moreover, the shared meaning of mealtimes for residents, informal carers and staff was constructed from each group's socio-cultural background, family experiences and memories, and was integral to residents' sense of normality, community and identity.

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Factors affecting the decision to place a relative with dementia into residential care

AIM: To find out the reasons why carers might decide that they could not continue caring for a relative with dementia at home. METHOD: Semi-structured interviews with carers of relatives who have dementia, before placing their relatives into residential care and then again four months after that placement. N=4. RESULTS: Wandering, aggression, incontinence and physical dependency in people who have dementia are factors that might lead carers to consider placing their relatives into residential care; stress associated with Christmas can be another influencing factor. CONCLUSION: Carers looking after a relative who has dementia would benefit if the relative was provided with increased day care and home respite sitting services; services should be increased at Christmas; and support staff should be knowledgeable about the specific needs of people who have dementia and their carers. 

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Evaluation of a problem-solving (PS) techniques-based intervention for informal carers of patients with dementia receiving in-home care

The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.

56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.

Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.

PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.

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Formal and informal care for people with dementia: factors associated with service receipt

Details of service receipt by 132 people diagnosed with dementia and their carers were collected in South London (boroughs of Lewisham, Camberwell, Southwark and Croydon), a geographical area served by several health and social care providers. The data collected included the Caregiver Activity Survey, which details the informal care given. This paper reports the formal and informal services received by the people with dementia at entry to the study. The amount of time spent on specific caring tasks by all informal carers of people with dementia averaged seven hours per week, but was significantly higher for co-resident carers, even when controlling for the level of dependency of the person cared-for. The odds ratios of receipt of formal services are given, according to where people were living: in the community or residential care, with co-resident carers or alone.

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From home to 'home': situating emotions within the caregiving experience

Emotions are an integral part of our daily lives, affecting who we are and how we react to the people and places around us. This emotiospatial hermeneutic has particular resonance for understanding informal carers' experiences of transitions in the place of care. Yet little work has explicitly addressed the link between emotions, care, and place. That which has focuses largely on community and the home, and largely ignores the transition of care from the home to care-home settings. Drawing on carer narratives from New Zealand, this paper examines how emotion and the affective entity of informal caregiving for frail older people is manifest and experienced as the site of care shifts from the private space of the home to the semipublic space of the residential care home. In doing so, the paper contributes, first, to conceptual debates around the geography of emotions, and, second, to a deeper understanding of how informal carers seek to create new identities for themselves as carers in the new place of care. Finally, drawing on debates around the meaning of home, I consider the extent to which informal carers can feel ‘at home’ caring for their spouse or close family member within care-home settings.

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Caring for older people in the 21st century: 'notes from a small island'

Drawing on carer narratives from research undertaken in New Zealand, this paper considers the interrelationship between place and the care-giving experience. In doing so, it considers: first, how informal carers of older people experience the transition in the place of care from the home to care homes; second, how they negotiate new identities for themselves as carers in these new care settings; and third, carers' views on how we might develop more inclusive models of care in care home settings. While much current work on care-giving in the home highlights the blurring of the boundaries between formal and informal care-giving, this paper suggests that the blurring of the boundaries of care may also be manifest in an increased penetration of informal care-giving within the semi-public space of the residential care home. 

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Continuing to pay : the consequences for family caregivers of an older person's admission to a care home

This paper aims to discuss the reasons why caregiving in the community had ended for a sample of dependent older people, two-thirds of whom had dementia. Comparisons are made between the situation of a spouse caring for a partner and a daughter or son caring for a parent in a separate household. Spouses in the study had often sustained a greater burden before caregiving collapsed than had daughters or sons. They were less likely, however, to have had support from the home care service. When caregiving in the community ended and the dependent older person entered a care home, family caregivers themselves often had a financial price to pay. Currently spouses have a legalliability to contribute to a partner’s care costs. The implementation of this liability depended on individual local authority policies and the views of the individual social worker doing the financial assessment. Because of the UK’s means-testing rules, daughters and sons were often penalized because a parent’s assets that they might have inherited had to be used to meet the care home costs. Resentment at being disinherited was related to the daughter’s or son’s family situation. Those with children or grandchildren themselves were far more likely to be angry than those without children.

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Scottish community care statistics 2001

Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.

Original document (pdf) on the Scottish Government website.

The extent and limits of solidarity in Dutch health care

Solidarity and equal access are twin principles in the Dutch health care system: solidarity between the rich and poor and among people with high and low risks formally guarantees equal access to health care services. However, in the past few years government policies, guided by the ideology of market reform and free choice, have resulted in patterns of inequality that favour privately insured over sickness fund insured. In the meantime, the level of public support for the principles of solidarity and equal access is dropping. A significantly larger portion of the Dutch people now believes that it would be too costly to grant everyone the right to all medical treatments possible. An important reason for the decline of solidarity and equal accessibility is the scarcity of resources. The scarcity of resources and the waiting lists resulting from it will reduce the extent of the benefits package and the access to the care services of the health system. The better-off will have the resources to receive care services that are not part of the basic package. Moreover, the scarcity of resources will affect the readiness in society to provide informal care. Opposed to the compulsory macro solidarity of the health insurance system, informal care is based on a voluntary kind of solidarity in which personal choice plays an important role. Waiting lists and diminishing professional support weaken this readiness, as such support is a necessary condition for informal carers to keep caring for their relatives and friends. Because the informal care system is a necessary supplement to the formal system of care, the lack of help offered by the latter will in the end endanger the solidarity not only in informal care, but in the institutional care system as well.

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Day care for persons with dementia: an alternative for whom?

Day care, as a type of care in between residential care and home help, has been available for several years, and is often referred to as an adequate alternative form of care for people with dementia. The goals of Swedish day care are to create a meaningful day for participants, offer family caregivers respite, and provide care for persons with dementia. The aim of this Swedish study was to describe day care clients with dementia problems over a 12-month period, and to discuss what distinguished those who discontinued day care from those who stayed with it. Of the clients, 76 percent were diagnosed by a doctor as having dementia between level one and four out of a total of six levels, according to the Berger rating scale of severity of senility. The results showed that one third of the people with dementia discontinued within four months. Another third dropped out within 12 months. People with behavioral problems and those who needed assistance with dressing and toileting discontinued earliest. All caregivers found some benefit of day care for their relatives and for themselves, with the exception of some caregivers of those who ended within four months. Most of the clients who lived alone at the start of day care, and ended within 12 months, went to a nursing home. Two differing conclusions may be drawn from the findings: (1) that offering day care services to persons with dementia who also show signs of behavioral problems is questionable; or (2) that the planning of day care in Sweden should be adjusted to also meet the needs of persons with behavioral problems, such as depression. In its current form, day care in Sweden seems only partially to fulfil its goals.

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Caring as worrying: the experience of spousal carers

Background.  With the emerging focus on home-based care, there is an increasing demand on spouses to look after their chronically ill partners at home. The theoretical aspects of caring have been much discussed in the literature, but the pragmatic aspects have received less attention. Carer stress has been explored, but little has been written about the meaning of caring to informal carers.

Aim.  The aim of this paper is to report one of the major themes that emerged from a study conducted between 1998 and 1999 to explicate the meaning of caring from the perspective of spousal carers for people with multiple sclerosis in order to shed light on and understand the challenges and demands these carers encountered.

Methodology.  An interpretive phenomenological approach was used to describe spousal carers’ experiences of caring for their partner. Ten spousal carers of people with multiple sclerosis participated. Data were collected through unstructured in-depth interviews and analysed by the method of hermeneutic analysis.

Findings.  This paper presents one of the major themes identified: ‘caring as worrying’. While the meaning of caring that emerged from this theme supports many of the philosophical understandings of caring as discussed in the literature, worrying as a care responsibility provides a further insight. Caring as worrying describes caring as a complex emotional relationship of responsibility in these participants. They worried about their partners, their relationships with their partners and their future. They also worried about their own health, institutional care, and lack of government support.

Conclusion.  Spousal carers’ worries have significant implications for health care professionals. The findings provide insight into the concerns and worries the carers of people with multiple sclerosis face when caring for their chronically ill partners at home.

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Intention and use of long-term care facilities and home support services by Chinese-Canadian family caregivers

One common myth about ethno-cultural minority family caregivers is that they do not use formal services. This study examined the intention of using home support and long-term care facilities by a random sample of 339 Chinese-Canadian family caregivers, using a modified version of the Andersen-Newman service utilization model. Filial piety, caregiving burden, care receivers, and health conditions are the common predictors identified. Filial obligation is most likely manifested through facilitating the care receivers to make use of the services needed, particularly for caregivers who reported a high level of caregiving burden.

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Family care-givers: the role of the healthcare assistant

This second article on family care-givers will focus on how healthcare assistants (HCAs) can support such care-givers within a variety of care settings, including GP practices, healthcare centres, hospital departments, hospital wards and in the care-giver's own home. Suggestions for training of HCAs who are likely to work with family care-givers will be proposed.

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The impact of service user cognitive level on carer attributions for aggressive behaviour

Background  This study was designed to test the hypothesis that carer attributions for aggressive behaviour vary according to a service user's severity of intellectual disability.

Methods  Forty-two residential care staff participated in an investigation examining the effects of the level of a service user's intellectual disability on causal attributions for their aggressive behaviour. Equal numbers of participants were assigned to either a ‘mild disability’ or a ‘severe disability’ condition and required to read a vignette depicting a service user with aggressive challenging behaviour. The service user's cognitive abilities were experimentally manipulated across conditions, whilst the behaviour described remained unchanged. Participants were required to make attributions along Weiner's (1980) dimensions of locus, stability and controllability, and in accordance with five prominent models of challenging behaviour (Hastings 1997b).

Results  The service user depicted in the mild disabilities condition was perceived to have significantly greater control over factors causing the aggressive behaviour than the service user in the severe disabilities condition. Participants in the severe disabilities condition considered the aggression to be significantly more challenging. Learned behaviour and emotional causal models of aggressive behaviour were favoured, whilst the physical environment account was seen as least appropriate. Additionally, the biomedical model was rated as significantly more applicable in the severe disability condition than in the mild disability condition.

Conclusions  Implications for staff and service users are discussed. In particular, the relationship between staff causal attributions for challenging behaviour, their emotional responses and willingness to engage in helping behaviour is explored.

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The effect on caregiver burden of a problem-based home visiting programme for frail older people

Objective: caregiver effects of geriatric care models focusing primarily at the patient have not been consistently studied. We studied caregiver effects of a nurse-led comprehensive geriatric evaluation and management (GEM) programme for community-dwelling frail older people that showed—in a randomised comparison with usual care-–health-related quality of life benefits for the care receivers.

Methods: this randomised trial included 110 caregiver/patient dyads who were followed up for 6 months. Primary analyses were intention-to-treat analyses of caregiver burden assessed with Zarit Burden Interview (ZBI; 0–88; higher means more burden). Preplanned subgroup analyses were conducted for cognition, living arrangement and patient/caregiver co-residence.

Results: overall, perceived caregiver burden showed no significant differences between study groups in changes over time. However, perceived burden was at baseline more than eight points higher in caregivers sharing a household with patients ( n = 23) compared to caregivers living separately ( n = 87). The intervention performed better in caregivers living together with the patient than in caregivers living separately ( P for interaction = 0.04). Co-resident caregivers experienced six-Zarit point improvement compared with four-point deterioration in the non-co-resident caregivers.

Conclusions: GEM at home benefited patients, but maybe not caregivers. Caregiver effects are related to whether caregivers live with the patient or not.

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Care: personal lives and social policy

Care: Personal Lives and Social Policy considers how normative assumptions about the meanings, practices and relationships of care are embedded in our everyday lives. It explores the ways in which these shape our sense of self and the nature of our relations with others. At the same time the book examines how social policy and welfare practices construct these relations and give or deny them meaning and validity. 
The authors draw upon a range of theoretical approaches and research evidence to bring into focus some of the different spaces and places where questions about care, in all its different dimensions, have been lived out, debated and struggled over. Each highlights the significance that class, 'race', gender, sexuality and age play in the analysis of care relations.

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Evidence of what works to support and sustain care at home for people with dementia: a literature review with a systematic approach

Background: This paper synthesises research evidence about the effectiveness of services intended to support and sustain people with dementia to live at home, including supporting carers. The review was commissioned to support an inspection regime and identifies the current state of scientific knowledge regarding appropriate and effective services in relation to a set of key outcomes derived from Scottish policy, inspection practice and standards. However, emphases on care at home and reduction in the use of institutional long term care are common to many international policy contexts and welfare regimes.

Methods: Systematic searches of relevant electronic bibliographic databases crossing medical, psychological and social scientific literatures (CINAHL, IngentaConnect, Medline, ProQuest, PsychINFO and Web of Science) in November 2012 were followed by structured review and full-text evaluation processes, the latter using methodology-appropriate quality assessment criteria drawing on established protocols.

Results: Of 131 publications evaluated, 56 were assessed to be of ‘high’ quality, 62 of ‘medium’ quality and 13 of ‘low’ quality. Evaluations identified weaknesses in many published accounts of research, including lack of methodological detail and failure to evidence conclusions. Thematic analysis revealed multiple gaps in the evidence base, including in relation to take-up and use of self-directed support by people with dementia, use of rapid response teams and other multidisciplinary approaches, use of technology to support community-dwelling people with dementia, and support for people without access to unpaid or informal support.

Conclusions: In many areas, policy and practice developments are proceeding on a limited evidence base. Key issues affecting substantial numbers of existing studies include: poorly designed and overly narrowly focused studies; variability and uncertainty in outcome measurement; lack of focus on the perspectives of people with dementia and supporters; and failure to understanding the complexities of living with dementia, and of the kinds of multifactorial interventions needed to provide holistic and effective support. Weaknesses in the evidence base present challenges both to practitioners looking for guidance on how best to design and deliver evidence-based services to support people living with dementia in the community and their carers and to those charged with the inspection of services.

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Comparing and contrasting the role of family carers and nurses in the domestic health care of frail older people

Care in the community has been constructed on the basis of professional support for carers who, as a result of community care policy that has released highly dependent people from residential care and long-stay wards, are carrying out a wide range of tasks, including complex health care activities. The present paper examines the health care activities currently undertaken by family carers and the way in which they work with, and are supported by, professional nurses in the home. It compares and contrasts the approaches of both groups to care-giving for this client group. The authors conclude by making some suggestions for improving the way in which family carers and nurses work together in the home.

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An evaluation of the effectiveness of a case-specific approach to challenging behaviour associated with dementia

Objectives: Treatment of challenging behaviour in dementia using standardized psychopharmacological or psychosocial approaches remains problematical. A case-specific approach was trialled in this study, based on extensive evidence that each case is different in aetiology, the effects of the behaviour on others and what interventions are possible given the available resources.

Method: Forty-four consecutive referrals for challenging behaviour (two-thirds in residential care) were assessed across multiple causal domains. Both assessment and development of interventions were undertaken in collaboration with family carers and care staff. Measures of behaviour and associated carer distress, as well as medication and service use, were taken pre-intervention and at 2- and 5-month follow-ups.

Results: Psychotropic medication was used with a minority of participants but, overall, antipsychotic use was reduced. Psychosocial methods predominated, with 77% of cases judged as mainly or entirely psychosocial by an expert panel. There were significant mean improvements in behaviour and carer distress. Using conservative criteria there was a 65.9% clinical success rate.

Conclusion: Results confirm those of other studies which have used multifaceted interventions tailored to the unique needs of each case. They compare favourably with results from trials of standardized psycho-pharmacological or psychosocial approaches. More trials are needed, necessarily involving further development of robust methodologies which reflect the case-specific nature of challenging behaviour associated with dementia.

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End of life care in sub-Saharan Africa: a systematic review of the qualitative literature

Background: End of life (EoL) care in sub-Saharan Africa still lacks the sound evidence-base needed for the development of effective, appropriate service provision. It is essential to make evidence from all types of research available alongside clinical and health service data, to ensure that EoL care is ethical and culturally appropriate. This article aims to synthesize qualitative research on EoL care in sub-Saharan Africa to inform policy, practice and further research. It seeks to identify areas of existing research; describe findings specifically relevant to the African context; and, identify areas lacking evidence.

Methods: Relevant literature was identified through eight electronic databases: AMED, British Nursing Index & Archive, CINAHL, EMBASE, IBSS, MEDLINE, PsycINFO, and the Social Sciences Citation Index; and hand searches. Inclusion criteria were: published qualitative or mixed-method studies in sub-Saharan Africa, about EoL care. Study quality was assessed using a standard grading scale. Relevant data including findings and practice recommendations were extracted and compared in tabular format.

Results: Of the 407 articles initially identified, 51 were included in the qualitative synthesis. Nineteen came from South Africa and the majority (38) focused on HIV/AIDS. Nine dealt with multiple or unspecified conditions and four were about cancer. Study respondents included health professionals, informal carers, patients, community members and bereaved relatives. Informal carers were typically women, the elderly and children, providing total care in the home, and lacking support from professionals or the extended family. Twenty studies focused on home-based care, describing how programmes function in practice and what is needed to make them effective. Patients and carers were reported to prefer institutional care but this needs to be understood in context. Studies focusing on culture discussed good and bad death, culture-specific approaches to symptoms and illness, and the bereavement process.

Conclusions: The data support or complement the findings from quantitative research. The review prompts a reconsideration of the assumption that in Africa the extended family care for the sick, and that people prefer home-based care. The review identifies areas relevant for a research agenda on socio-cultural issues at the EoL in sub-Saharan Africa.

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Telecare in practice: a telecare initiative focusing on carers of older people based on ACTION

There is a continual need to support and assist carers who play a central role in providing informal care for a relative. This approach to care provision must have a strong foundation based on liaison between the family carers, professional carers and the older or disabled person who is the focus of care. Services that enable effective communication using videoconferencing, interactive communication, tailored Web based programs and other specific resources configured for the needs of the individual can help carers carry out their role effectively. The initiative described in this paper uses a combination of telematic focused interventions to meet the needs of carers and provides an in-depth overview of the ACTION telecare project.

The ACTION (Assisting Carers using Telematic Interventions to meet Older persons’ Needs) project was set up and funded because of the need to develop supportive methods for carers and older people. The initiative was designed to improve autonomy and maintain independence and quality of life for people in their own homes and therefore reduce the need for institutional care. This has an economic as well as a social dimension. The project has demonstrated that with the involvement of users at all levels it can fulfil this need. The role of the ACTION project was to develop a cost-effective telecare system for the provision of education, information and support and has been demonstrated with successful results.

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Determinants of unmet needs among Slovenian old population

Background: Population ageing has significant effects on societies. The organization of care for dependent old people is one of the key issues for ageing societies. The majority of care for homebound dependent old people in Slovenia is still performed by informal carers, even though the use of formal services has been increasing over the last 20 years. The proportion and characteristics of people with unmet needs are important for the development of long term care social policy.

Method: The SHARE (Survey of Health, Ageing and Retirement in Europe) survey was used to assess the determinants of care arrangements and of unmet needs of the aging population in Slovenia. Multinomial regression analysis was used to evaluate individual and contextual determinants of care arrangements and unmet needs.

Results: The proportion of older people with unmet needs is 4%. As expected, “needs” (Functional impairment OR=4.89, P=0.000, Depression OR=2.59, P=0.001) were the most important determinant, followed by the predisposing factor “age” (age OR 1.15, P=0.000) and two enabling factors, namely:“community setting and “availability of informal care within household” (Urban areas OR=.47, P=0.021; Household size 3+ OR=2.11, P=0.030).

Conclusion: This study showed that there are a proportion of older people in Slovenia with severe needs for care, which are being unmet. As shown by the importance of enabling factors, social policy should encourage the development of formal services in rural areas and elaborate policy measures for informal carers.

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Children and Families Act 2014: chapter 6

The Act makes provision about children, families, and people with special educational needs. Specifically, it covers: adoption and children looked after by local authorities; family justice (e.g. mediation); children and young people in England with special educational needs; childminding agencies; the Children's Commissioner; statutory rights to leave and pay; time off work for ante-natal care; and the right to request flexible working. Part 5 of the Act contains various provisions relating to the welfare of children, including giving children in care the choice to stay with their foster families until they turn 21, making young carers’ and parent carers’ rights to support from councils much clearer, reforming children’s residential care to make sure homes are safe and secure and a requirement on all state-funded schools (including academies) to provide free school lunches on request for all pupils in reception, year 1 and year 2.

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Health-related quality of life and attitudes to long-term care among carers of older people using social services

Family carers provide more care than the combined efforts of the NHS and social services departments, and their value to the economy is estimated to be around £34 billion a year (Hirst, 1999). However, many carers have health problems of their own. Using three standardised measures to screen for activity limitation (ADLs), depression (GHQ-28) and health related quality of life (HRQoL) (SF36), a study of carers of people aged 75 and over referred consecutively to social services departments in adjacent inner city areas showed a high prevalence of limitations in activities of daily living (ADLs), that a substantial proportion (42 per cent) had GHQ-28 scores high enough to suggest depression and their scores on the SF-36 showed that many carers were low in vitality and tired. Co-resident carers had poorer psychological health and more difficulties with social functioning than non-resident carers, and were older, but were not significantly different in self-reported physical health. Whether carers wanted the cared-for person to remain at home for as long as possible depended on their relationship (spouse or not) and whether the older person was depressed. The carer’s own psychological health was not related to their attitude to institutional care. The study suggests that targeting social care resources on carers showing psychological distress may not reduce downstream expenditure on long-term care.

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Scottish community care statistics 2002

Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care, residential care, private nursing homes, hospitals and special needs housing for each user group.

Original document on Scottish Government website.

Determinants of the probability of obtaining formal and informal long-term care in European countries

The aim of this report is to identify patterns in the utilisation of formal and informal long-term care (LTC) across European countries and discuss possible determinants of demand for different types of care. It addresses specific research questions on the volume of different types of care and the conditions under which care is provided. The latter include demographic factors, especially population ageing, health status and the limitations caused by poor health, family settings and social networking. The analysis indicates substantial differences in the receipt of LTC across European countries, depending on traditions and social protection models, which determine both the availability of institutional care and the provision of informal care. In countries with a Scandinavian approach, where the levels of state responsibility and provision of institutional care are high, informal care is less prominent and is mostly provided on an irregular basis by caregivers outside the family. As needs for care increase, formal settings are more common. Countries in the Continental Europe group are less uniform, with a high share of individuals using formal settings of care, but also combining formal and informal care. In Mediterranean countries, the provision of informal care, including personal care, plays a much greater role than formal LTC. 

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Community care: challenging the assumption of gratuitous care

This paper critically examines the reliance of formal home-based services upon the availability of informal carers and questions whether the level of informal assistance is sustainable. The paper challenges the 'taken for granted' assumptions of community care and contends that residential care should be seen in terms of a transition - a 'safe harbour' both for recipients and carers. Finally, the paper suggests that the move from containment within institutions to a regime of community dispersion requires critical evaluation of deinstitutionalisation initiatives; and it argues for an engagement of our collective responsibility for the security of our senior citizens.

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Geriatric assessment in long term care units and nursing homes

La Atención de Larga Duración ("Long term care") es la prestada porcuidadores informales (familia, amigos..) o profesionales (serviciossanitarios y sociales)La Dependencia, asociada habitualmente a enfermedades crónicas,provoca a menudo, la necesidad de atención en Residencias o Hospitalesde Larga Estancia, cuando ya no es posible prestar la atenciónadecuada en el domicilio.En pacientes institucionalizados deben realizarse valoracionesestructuradas y sistematizadas de manera periódica (al menos unavez al año), utilizando Instrumentos de medición adecuados y validados,con la finalidad de identificar los problemas y elaborar el Plan deIntervención

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Legislative scrutiny: Care Bill: eleventh report of session 2013-14: report, together with formal minutes

The Care Bill was introduced into the House of Lords on 9 May 2013, received its Third Reading on 29 October 2013 and then proceeded to the House of Commons where it received its Second Reading on 16 December 2013. Commons’ Committee stage began on 9 January 2014 and is due to end on 4 February. This Report examines the most significant human rights issues in the Bill. 

In this report, the Joint Committee on Human Rights examines the most significant human rights issues in the Care Bill, which must ensure that all providers of publicly arranged or paid-for social care services are bound by the Human Rights Act. The Bill provides an opportunity to fill the gaps in human rights protection for all those receiving publicly arranged or paid-for care, including in their own home and in residential care homes under arrangements made other than under the National Assistance Act 1948. The opportunity to legislate to this effect must not be missed by Parliament. The Committee recommends an amendment to the Bill which would close this significant gap in human rights protection for people receiving publicly arranged or paid-for care. Amendments should be made to either the Care Bill or the Children and Families Bill (debated in the House of Lords on 27 January 2014), to give parent carers of disabled children equivalent rights to a needs assessment for support.

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Transitions at the end of life for older adults: patient, carer and professional perspectives : a mixed-methods study

Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.

Setting: England.

Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.

Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.

Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.

Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.

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Growing older with learning disabilities: the GOLD programme

This paper provides an overview of the GOLD programme at the Foundation for People with Learning Disabilities. It describes the work of the 13 funded projects in a context of wider research concerning ageing and learning disabilities. Particular attention is given to those people living with older family carers and those living in residential services for older people. The picture is of services that offer little confidence for the future, as people with learning disabilities grow older.

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Coping with caring: profiles of caregiving by informal carers living with a loved one who has dementia

Background and aim: While the number of people suffering from dementia in the Netherlands will double in the next 25 years, there are no plans to expand the capacity of residential care facilities for these patients. This will almost inevitably lead to an increase in the burden placed on informal carers. We investigated how caregivers living with a loved one who has dementia experience their caregiving situation.

Methods: For this study, 53 caregivers ranked a structured set of opinion statements covering a representative range of aspects of caregiving. By-person factor analysis was used to uncover patterns in the rankings of statements.

Results: Five distinct profiles of caregiving were identified that provide information on the various care situations that can occur, the needs and dilemmas that these caregivers face, and the subjective burden and perseverance time of the carers.

Conclusions: The findings contribute to the development of interventions for the support of informal caregivers.

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Can formal elderly care stimulate female labor supply? The Japanese experience

This study analyzes the impacts of the Japanese Long-Term Care Insurance (LTCI), a decade after its launch, with respect to the female labor supply in Japan. The radical program has caused the emergence of markets for various care services apart from permanent institutional care, which is only a major formal care sector in many developed countries. The availability of various formal care services can stimulate female labor supply through a reduction of the burden of informal caregiving. To investigate the impacts of the LTCI, we compare the labor market behavior of females who face requirements for elderly care in their household for three periods—before the launch of the LTCI, four years after the launch, and ten years after the launch. Our empirical analysis indicates positive effects of the launch and diffusion of the LTCI on female labor supply. As a result of the LTCI, care for male elders is no longer an obstacle for female labor supply, but care for female elders is still burdensome. We also find that the care requirement reduces the probability of being a regular worker; however, regular workers are more likely to utilize formal care, whereas many nonregular workers provide informal care by themselves.

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Caring for our future: progress report on funding reform: presented to Parliament by the Secretary of State for Health ... July 2012

Care and support is something that everyone in this country will experience and be part of at some point in their lives. Some people have impairments from birth, or develop an impairment or mental health condition during their working life, and use care and support to maintain active and independent lives. Many, as they become older, become more frail and rely on care and support from others. As the Prime Minister’s Challenge on Dementia has already shown, we are committed to improving the lives of people with care needs. This report, and the White Paper and draft Care and Support Bill published alongside this report, are about how we provide high quality care and support for all. 

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Why do older people in New Zealand enter residential care rather than choosing to remain at home, and who makes that decision?

To investigate why older people with high support needs entered residential care and who made that decision. Longitudinal study in three New Zealand cities. Participants: older people (n = 144); (unpaid) caregivers (n = 47); service co-ordinators (n = 12); multidisciplinary team members (n = 4). Questionnaires: InterRAI Minimum Data Set Assessments Home Care; Caregiver Reaction Assessment; Mastery and control. Semi-structured interview questions focussing on decision-making, and concerns that might result in residential care entry. Interviews were at baseline and 6 months, or on entering residential care. Significant factors were found, which increased the likelihood of residential care entry for older people. These included: high scoring dependency on the instrumental activities of daily living (IADL) scale, and an adult child living some distance away. The evidence from the study participant groups highlighted contrasting views about who was important in the decision making about entry to residential care. Older people who had moved into residential care generally thought that doctors had played a key role, whereas family members and professionals tended to consider the move was the caregiver’s decision. Older people with good levels of knowledge about services and support, and good housing, were more likely to continue to live in the community. Policy makers and funders need to understand the importance of clear communication, information and appropriate support services for older people who wish to remain at home, and their caregivers.

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The use of long-term care services by the Dutch elderly

The main focus of this paper is the development of an appropriate framework to characterize the process of long-term care utilization by the Dutch elderly. Three broad categories of care services are considered, namely, informal care, formal care at home, and institutional care. The use of these care alternatives is modelled jointly, and stochastic dependence is allowed between the various care options. Special attention is given to the concept of health status and to the potential endogeneity of this variable in the model. We apply a flexible non-parametric method to summarize the multidimensional concept of health status into a limited set of interpretable indices. The model is applied on the Longitudinal Ageing Study Amsterdam (LASA). We find strong effects of health status, gender, socio-economic variables, and prices on the utilization of long-term care services. Copyright © 2000 John Wiley & Sons, Ltd.

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Willingness to use formal long-term care services by Korean elders and their primary caregivers

This study examined predictors of older adults' and primary caregivers' willingness to use formal long-term care (LTC) services to understand possible use patterns of mandatory public LTC insurance programs in Korea. It focused on views regarding who (adult children or the government) should bear the responsibility for older adults' care. Logistic regression models were estimated using data from 1,168 older Korean adults aged 65 or older and their primary caregivers from a national survey. The results showed that older adults' and their caregivers' views on care responsibility were a dominant predictor of their willingness to use both formal home care services and nursing home care services. Both older adults and their family caregivers' willingness to use LTC services should be considered when predicting demand for LTC services. Efforts should promote the perspective that formal LTC services are an acceptable social norm.

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Preparing for the future: people with learning disabilities and their ageing family carers

The update reports on an action research project which aimed to identify how best to support older family carers and their relatives with learning disabilities plan for a transition from living together in the family home. It found that there are eight distinct stages to this process. Moving on takes time and sensitivity on the part of services and workers. The process must develop at a pace and in a way that retains the confidence of the family carers. Firm plans are only realistic where a move is imminent. Where this is not the case preparation work is still vital. 3 refs. [Summary]

Effectiveness of the Liverpool care pathway for the dying in residential care homes: An exploratory, controlled before-and-after study

Background: Clinical pathways aim to ensure that individuals receive appropriate evidence-based care and interventions, with the Liverpool Care Pathway for the Dying Patient focusing on end of life. However, controlled studies of the Liverpool Care Pathway for the Dying Patient, particularly outside of cancer settings, are lacking.

Aim: To compare the effects of the Liverpool Care Pathway for the Dying Patient and usual care on patients’ symptom distress and well-being during the last days of life, in residential care homes.

Design: Exploratory, controlled before-and-after study. During a 15-month baseline, usual care was carried out in two areas. During the following 15-months, usual care continued in the control area, while residential care home staff implemented Liverpool Care Pathway for the Dying Patient use in the intervention area. The intervention was evaluated by family members completing retrospective symptom assessments after the patient’s death, using the Edmonton Symptom Assessment System and Views of Informal Carers – Evaluation of Services.

Settings/participants: Patients who died at all 19 residential care homes in one municipality in Sweden.

Results: Shortness of breath (estimate = −2.46; 95% confidence interval = −4.43 to −0.49) and nausea (estimate = −1.83; 95% confidence interval = −3.12 to −0.54) were significantly reduced in Edmonton Symptom Assessment System in patients in the intervention compared to the control area. A statistically significant improvement in shortness of breath was also found on the Views of Informal Carers – Evaluation of Services item (estimate = −0.47; 95% confidence interval = −0.85 to −0.08).

Conclusion: When implemented with adequate staff training and support, the Liverpool Care Pathway for the Dying Patient may be a useful tool for providing end-of-life care of elderly people at the end of life in non-cancer settings.

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Burden of Alzheimer's disease: population-based estimates and projections for New Zealand, 2006-2031

OBJECTIVE: To estimate the burden of Alzheimer's disease (AD, including 'mixed' dementia) in New Zealand in 2006, and project this burden out to 2031. METHOD: An incidence to prevalence methodology was utilized, the foundation of which is a discrete time Markov model allowing for multiple stages of disease (early vs late). Population estimates and projections, and all-cause mortality rates, were obtained from Statistics New Zealand. In the absence of usable New Zealand data, data on disease incidence and progression were obtained from systematic reviews of the international (mainly European, Australian and North American) literature. Projection scenarios included a demographic scenario in which change resulted only from increases in population size and ageing; a prevention scenario in which incidence rates were reduced by 25% from 2011; a treatment scenario in which disease progression rates were likewise reduced by 25% from 2011; and a combined scenario capturing both interventions. RESULTS: The model estimated that approximately 28000 people are currently living with AD (whether formally diagnosed or not), approximately 55% in the early and 45% in the late stage of the disease; approximately 6600 people newly develop AD each year; and approximately 2300 people die from (as opposed to with) this condition. The model projected that the prevalence of AD will increase approximately 2.5-fold (to approx. 70000 people) by 2031, if demographic drivers are unopposed. Plausible improvements in prevention and treatment, however, acting together, could reduce this growth by up to 50%, so that the prevalence of AD only doubles. CONCLUSION: Even this more optimistic projection has profound implications for the funding and provision of dementia care services, as well as for patients, their families, informal carers and the psychogeriatric workforce. New service configurations and models of care will be necessary. Access, quality and coordination standards for home care, day care, respite care, residential care and specialist services (including memory clinics) will need to respond accordingly.

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Informal support in Portugal by individuals aged 50+

In Portugal, individuals aged 50+ have an important role in the provision of co-residential care. This study aimed to rank Portugal relative to 15 European countries with regard to the prevalence of co-residential care (daily or almost daily personal care), and extra-residential help/care (household help and/or personal care) provided by individuals aged 50+, and determine the factors associated with the provision of these types of support in the Portuguese context. The study used data from the SHARE wave 4 project (2010–2011) and was based on an analysis of variance and logistic regression models. Portugal differs from other European countries, as it has the highest rate of co-residential care (12.4 %) and the lowest rate of provision of extra-residential help/care (10.8 %). It is concluded that the quality of life (QoL) of Portuguese co-residential carers is lower than the QoL of non-carers, but extra-residential help/care provided once a month or less has a positive impact on the QoL of the providers. Co-residential care and the provision of frequent extra-residential help/care (daily or weekly) were associated with a higher number of depressive symptoms. The results further showed that, in Portugal, co-residential carers and extra-residential helpers/carers have different socio-demographic, economic and health characteristics. This study demonstrates that it is important for scientific research to differentiate the type and frequency of informal support, since this can help us design policies to meet the specific needs of the various types of informal carers aged 50+.

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Carers' experiences when the person for whom they have been caring enters a residential aged care facility permanently: a systematic review

BACKGROUND: Primary research, including qualitative research, as well as experts working in social services and aged care have identified the mixed feelings carers experience when the person they have been caring for is admitted into a residential aged care facility permanently. They have raised the importance of understanding these experiences as a means to implementing policies and programs that enhance carers' well-being. This systematic review was motivated by the need to use evidence to inform effective and feasible interventions to support carers, and the absence of a systematic review synthesizing the qualitative evidence on how carers experience this transition.

OBJECTIVES: The objective of this qualitative systematic review was to identify and synthesize the evidence on the experiences of carers of older people when the person they had been providing care for is admitted permanently into a residential aged care facility, and to draw recommendations from the synthesis of the evidence on these experiences to enhance policy and programming aimed at supporting affected caregivers.

INCLUSION CRITERIA: TYPES OF PARTICIPANTS: All carers of people who had experienced the person they had been caring for at home being moved into a residential aged care facility permanently. PHENOMENA OF INTEREST: Experiences of the caregiver of the older person when the person they have been caring for at home is admitted into a residential aged care facility permanently. TYPES OF STUDIES: The review considered qualitative studies, including but not limited to designs such as phenomenology, grounded theory, ethnography and action research. TYPES OF OUTCOMES: The outcomes are in the form of synthesized findings pertaining to carers' experiences when the person they have been caring for is admitted into a residential aged care facility permanently.

SEARCH STRATEGY: A comprehensive search of leading databases which are sources of qualitative published and unpublished studies was conducted between 18 September 2013 and 10 November 2013. The search considered studies reported in English and published from the database inception to 10 November 2013.

METHODOLOGICAL QUALITY: Papers selected for retrieval were assessed by two independent reviewers for methodological validity prior to inclusion in the review using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. DATA EXTRACTION: Data were extracted from identified papers using the standardized data extraction tool from the Joanna Briggs Institute Qualitative Assessment and Review Instrument. The data extracted included descriptive details about the phenomena of interest, populations and study methods. DATA SYNTHESIS: The Joanna Briggs Institute meta-aggregative approach for synthesizing qualitative evidence was used. Research findings were pooled using the Joanna Briggs Institute Qualitative Assessment and Review Instrument. Study findings that were supported by the data in primary studies were organized into categories on the basis of similarity of meaning. These categories were then subjected to a meta-synthesis to produce a set of synthesized findings.

RESULTS: Fourteen studies matched the inclusion criteria and were included in the review. From these 14 studies a total of 71 study findings about how carers experience the transition when the person they have been caring for is TRUNCATED AT 500 WORDS.

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Effectiveness of interventions that assist caregivers to support people with dementia living in the community: a systematic review

The objective of this review was to assess the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community. Adult caregivers who provide support for people with dementia living in the community (non‐institutional care). Interventions designed to support caregivers in their role such as skills training, education to assist in caring for a person living with dementia and support groups/programs. Interventions of formal approaches to care designed to support caregivers in their role, care planning, case management and specially designated members of the healthcare team – for example dementia nurse specialist or volunteers trained in caring for someone with dementia. This review considered any meta‐analyses, systematic reviews, randomised control trials, quasi‐experimental studies, cohort studies, case control studies and observational studies without control groups that addressed the effectiveness of interventions that assist caregivers to provide support for people living with dementia in the community.

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Social Services and Well-being (Wales) Act 2014: part 4 and 5 code of practice (charging and financial assessment)

This code provides guidance to the Part 4 and 5 of the Social Services and Well-being (Wales) Act 2014, in relation to direct payments, choice of accommodation, charging and financial assessment. The Act establishes that local authorities can exercise the discretion to charge for the provision of care and support, or to require a contribution or reimbursement, where they feel it is appropriate to do so and where they have established that the person required to pay any charge, contribution or reimbursement, has sufficient financial means to do so. The code covers: designing a charging policy; common issues in relation to charging; charging for care and support in a care home; choice of accommodation when arranging care in a care home; making payments for additional costs for preferred accommodation; charging for care and support in the community; and charging for support to carers.

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Adult social care: scoping report: summary

The Law Commission’s Tenth Programme of Law Reform includes a project to review adult social care law in England and Wales. The Department of Health is the lead department for this project. The first stage of the project is to undertake a scoping review of adult social care law and to publish a report setting out the proposed agenda for the substantive project. This summary provides a brief overview of the areas of reform identified in the Scoping Report and the direction of our review in each area. 

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Planning care for people with dementia

A study by the National Institute for Social Work suggests that estimates can be made about the length of time that a person with dementia will need community and long term care services. This can be done based on an assessment of the severity of dementia at the time of the community care assessment. The author highlights the need for an appraisal of local old age psychiatry services and eligibility criteria, and the importance of monitoring carers' ability and willingness to provide care.

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Substitution between formal and informal care: a ‘natural experiment’ in social policy in Britain between 1985 and 2000

This paper is concerned with the issue of substitution between formal and informal care in Britain between 1985 and 2000. This period provides the conditions for a ‘natural experiment’ in social policy. During the late 1980s/early 1990s, there was an increase in long-stay residential care for older people, which came to an end around the mid-1990s. The paper examines whether this increase in formal services led to a decline in informal care, and whether this was subsequently reversed. The focus is on provision of intense informal care by adult children to their older parents, trends in which are identified using General Household Survey data. The paper shows that there was a decline in provision of intense and very intense co-resident care for older parents between 1985 and 1995, which came to an end in the mid-1990s. These trends in intergenerational care were negatively related to changes in long-stay residential care. In particular, controlling for age and disability, there was evidence of substitution between nursing home/hospital care and very intense co-resident care for older parents. A key policy implication is that an expansion of very intense formal services for older people could bring about a decline in very intense intergenerational care. The paper relates these findings to the current debate on reform of the long-term care system in England.

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A systematic review of the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their carers

To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified.

Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005. Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques.

Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five economic evaluations of respite care services were found, all of which compared day care with usual care and only one study was undertaken in the UK. Day care tended to be associated with higher costs and either similar or a slight increase in benefits, relative to usual care. The economic evaluations were based on two randomised and three quasi-experimental studies, all of which were included in the effectiveness analysis. The majority of studies assessed health and social service use and cost, but inadequate reporting limits the potential for exploring applicability to the UK setting. No study included generic health-related quality of life measures, making cost-effectiveness comparisons with other healthcare programmes difficult. One study used sensitivity analysis to explore the robustness of the findings.

The literature review provides some evidence that respite for carers of frail elderly people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers were generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. Economic evidence suggests that day care is at least as costly as usual care. Pilot studies are needed to inform full-scale studies of respite in the UK.

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Better care at home and in care homes: contract inserts

People with dementia and their carers need a range of services, some of which will be dementia- specific and others which will be more mainstream in nature, but which may deliver services to large numbers of people affected by dementia. In some instances, these mainstream services may not respond well to the specific needs of people living with dementia and the purpose of this document is to provide a statement of requirements to meet those needs. The document sets out a number of ‘contract inserts’ which describe the specific requirements of people with dementia and their carers when using mainstream services and may be used by commissioners when drawing up their own statements of requirements for discussions for service redesign or in a procurement situation. They may be included in a subsequent contractual arrangement with a Provider. The document also sets out a number of dementia-specific quality standards which commissioners may use to measure the quality of services provided to people with dementia and their carers. At the end of the document, information is provided on documents and practical tools which may be of assistance to commissioners in developing a dementia-friendly community.

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Relatives as paid care-givers: how family carers experience payments for care

Payments for care, by which people in need of long-term care directly employ care workers, have been introduced in many European countries. In The Netherlands, care dependants are allowed to use these payments to hire relatives to perform care tasks. Care-givers who are employed by their relatives are in a hybrid position, because they are contracted as employees in the informal setting of a family home and its affective care relationships. This paper reports a qualitative study of relatives' experiences of payments for care and how these affect their care-giving. In-depth interviews were undertaken with 17 paid carers: they were asked to respond to three fictional vignettes of contrasting care trajectories. It was found that the cash nexus had mixed and partly contradictory implications for the paid care-givers. On the one hand, the care-givers were satisfied with the arrangement, as the payments recognised and raised their status as carers, and were seen as reward and reciprocation for their care work. Some carers had found that the contract helped manage strained relationships, by enabling a clearer differentiation of care tasks from affection. On the other hand, some who regarded themselves as employees and saw their role as equivalent to formal carers felt a greater obligation to provide high-quality care, and found that they were thanked less often and received fewer tokens of gratitude.

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'We didn't know it would get that bad': South Asian experiences of dementia and the service response

The aim of the present paper was to examine some views and experiences of dementia among older South Asian people, as well as their families and carers, and to explore central issues of service support. Data were collected in Scotland through interviews with 11 professionals working with South Asian people with dementia, and four case studies of South Asian people with a diagnosis of dementia, as well as their families and carers. The case studies demonstrated overwhelmingly negative experiences of dementia, with poor quality of life, desperate needs for support, lack of access to appropriate services, little knowledge of dementia, and isolation from community and family life. The interviews with professionals described a strong demand for services, a need to develop awareness and knowledge about dementia in South Asian communities, and a need to promote more culturally sensitive, individually responsive services. Similarities between South Asian people and the non-South Asian population include stress on carers, increasing isolation, problematic diagnostic practices, lack of knowledge and demand for service support. Differences include limited use of non-National Health Service (NHS) support, dealing with later stages of dementia at home, particularly negative views about residential care, culturally based attitudinal differences and use of the term 'dementia' in English as neutral rather than stigmatising. The present authors suggest that there is little knowledge and experience of dementia in South Asian communities, as well as restricted access to appropriate services, despite the efforts of voluntary sector and NHS special projects. There is demand for services, especially at home. Services need to develop individual responsiveness for effective working in a diverse society.

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Informal Care and Employment in England: Evidence from the British Household Panel Survey

More than 40% of the respondents in the British Household Panel Survey provide informal care at least for one year within the period 1991-2003 and carers are usually less likely to hold simultaneously a paid job. There is little evidence on the mechanism that links informal care provision and labour market outcomes. This paper provides evidence on the pathways through which this pattern arises using a multivariate dynamic panel data model that accounts for state-dependence, feedback effects and correlated unobserved heterogeneity. We find evidence of a causal link from informal care to employment with employment rates reduced by up to 6 percentage points. However, this effect is only found for co-residential carers who account for one third of the population of carers and less than 5 percent of the overall labor force. For the same group, a significantly smaller link from employment to care provision is found. A micro-simulation exercise using the model estimates suggest that the overall potential pressure on the provision of informal care created by a rise in the employment rate is minimal.

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"But I don't want eldercare!" Helping your parents stay as strong as they can as long as they can

Written from an American perspective, this book tackles head on the powerful myths and discriminatory attitudes that underlie one of the unspoken moral disasters of contemporary life: that so many older people die, before their time, cut off from their family and their homes, unhappy and alone.

Drawing on the author's professional expertise as an independent living consultant and a decade of caring for his mother, the book offers down to earth, practical advice aimed at keeping elderly parents in their own homes for as long as possible. Having identified eight key elder care support 'rules', it explains how best to gauge the type and level of support required by an elderly parent covering both physical and psychological needs. Placing a strong emphasis on the quality of life, it describes how to avoid common assumptions about old age, how to determine what is 'normal' and 'abnormal' for the parent concerned and when and how to intervene. It describes the importance of forward planning in connection with financial and health matters and briefly describes arrangements such as the power of attorney, living wills and advance healthcare directives. 

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Short-term residential care for dementia patients: predictors for utilization and expected quality from a family caregiver's point of view

Background: Short-term residential care (SRC) has proved to be effective in reducing the burden on family caregivers of dementia patients. Nevertheless, little is known about the factors which influence its usage or the expectations of family caregivers regarding quality. In this paper we address the following questions: (i) which variables of the care situation, the caregivers and their attitudes act as predictors for the utilization of SRC facilities? (ii) What are the views of caregivers about the quality of SRC?

Methods: The cross-sectional study was carried out as an anonymous written survey of family caregivers of dementia patients in four regions of Germany. With a 20% response it was possible to analyze the quantitative and qualitative data from 404 and 254 family caregivers respectively. Predictors for utilization were evaluated using binary logistic regression analysis. The answers to questions of quality were evaluated using qualitative content analysis.

Results: Significant predictors for the utilization of SRC are the assessment of the helpfulness of SRC and the caregiver's knowledge of the accessibility of SRC facilities. Family caregivers who had already used SRC most frequently expressed the wish for “good care” in SRC facilities, followed by a program of suitable activities for dementia patients.

Conclusions: In order to increase the rate of utilization, family caregivers must be convinced of the relevant advantages of using SRC facilities. The staff should be trained in caring for dementia patients and appropriate activities should be available.

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Impact of home based long term care on informal carers

Background: Well coordinated and integrated home based care is an efficient and cost effective model for providing long term care. There is, however, emerging evidence to suggest that family members pay a price for taking on long term care responsibilities at home.; Objective: This article draws on published literature to provide an overview of the health, economic, and social issues faced by informal carers. The objective is to contribute to the knowledge base of clinicians about the impact of chronic disease and disability on families taking on the care responsibility in a home environment, thereby informing the delivery of best practice.; Discussion: In 2006, there were approximately 632,694 primary carers aged 15 years or more in Australia. These carers collectively have the lowest level of wellbeing scored by any group, and compared to the general population have a significantly higher level of depression, were more likely to experience physical pain, and more likely to experience financial stress. Failure by clinicians to recognise the burden on informal carers may result in long term adverse outcomes for this group that may outweigh the benefits of managing people with disability and chronic illness in the community.

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Unpaid carers hold the key to sustainable social care : is it time they got the credit?

This paper reviews the challenges faced by unpaid family carers and the current support and services available to them. It argues that current carer support should be built on and presents the evidence for doing so, including evidence of the opportunities to make substantial savings in residential care costs. The paper suggests a new way in which proposed resource allocation and personal budget systems could be developed in order to sustain caring, avoiding the risk of a new perverse incentive to families to end caring roles. The paper provides some modelling of the costs and benefits of this approach. 

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Study protocol for the development of a European measure of best practice for people with long term mental health problems in institutional care (DEMoBinc)

Background: This study aims to build a measure for assessing and reviewing the living conditions, care and human rights of people with longer term mental health problems in psychiatric and social care institutions. Protection of their human rights is imperative since impaired mental capacity secondary to mental illness can make them vulnerable to abuse and exploitation from others. They also constitute a major resource pressure for mental health services, social services, informal carers and society as a whole.

Methods/Design: domains are identified by collating results from: i) a systematic review of the literature on institutional care for this service user group; ii) a review of the relevant care standards in each participating country; iii) Delphi exercises in partner countries with mental health professionals, service users, carers and advocates. Common domains and cross-cutting themes are agreed by the principal researchers and an international expert panel. Items are developed to assess these domains and incorporated into the toolkit which is designed to be administered through a face to face interview with the institution's manager. The toolkit is refined in response to inter-rater reliability testing, feedback from interviewers and interviewees regarding its utility, and feedback from key stakeholders in each country about its ability to deliver information that can be used within each country's established systems for quality assessment and review. Cross-validation of the toolkit ratings against service users' quality of life, autonomy and markers of recovery tests whether it can deliver a proxy-measure of the service users' experiences of care and the institution's promotion of their human rights and recovery. The ability of the toolkit to assess the "value for money" delivered by institutions is investigated by comparing toolkit ratings and service costs.

Discussion: The study will deliver the first international tool for the assessment of the quality of institutional care for people with longer term mental health problems that is accurate, reliable, informative, useful and easy to use.

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Quality of life in a heterogeneous sample of caregivers of cancer patients: an in-depth interview study

To establish the best approach to develop a quality of life (QoL) questionnaire for cancer-patient caregivers, this study attempts to identify primary domains of QoL in terms of their impact on a purposive sample of caregivers. Seventy-seven informal adult caregivers of cancer patients (breast cancer, paediatric haematological malignancies or melanoma) with different relationships with the patients (parents, children, spouses, siblings, and friends) were recruited at three specialised French centres and extensively interviewed. Caregivers' lives were altered in several domains: psychological well-being, leisure and everyday activities, relationships with institutional caregivers, occupation and finances, relationships with family and friends, physical well-being, and relationship with the patient. The relative importance of these domains varied mainly in association with the caregiver-patient relationship. Multiple correspondence analysis identified two isolated clusters: children, and, most significantly, friends and siblings. The latter groups emphasised the repercussions on their psychological well-being and their relationship with the patient, but were less willing to discuss the impact on their relationship with caregivers and on occupation, finances, leisure, and everyday activities. This study focuses on the caregiver's perspective and advocates the development of a short QoL core questionnaire. Additional modules should be cancer-specific or dedicated to specifics of the caregiver-patient relationship.

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A dynamic analysis of informal care and employment in England

This paper analyzes the dynamics in employment and informal care outcomes of women in England. To this end, we develop a dynamic model to describe pathways leading to a negative correlation between informal care and employment in a cross-section. The model allows for different types of caregiving, correlated permanent unobserved heterogeneity and initial sorting. The model is estimated on data from 6 waves of the BHPS 2000–2005. Our findings suggest modest feedback effects. We find a negative effect of co-residential caregiving on future employment and a negative effect of employment on future co-residential and extra-residential caregiving. We also find evidence of positive state-dependence in caregiving although most of the persistence in such activities is related to unobserved heterogeneity rather than state-dependence.

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The economic and social cost of dementia in Ireland

The economic and social burden of dementia on society is the value of all the resources used to prevent, diagnose, treat, and generally cope with the illness. This article assess the overall resource implications of dementia in Ireland. Six main areas are covered in the cost analysis as follows: mortality and life years lost, in-patient acute care, in-patient psychiatric care, residential long-stay care, family care, and primary and social care in the community. The critical role of carers in maintaining people with dementia in their own home is reflected in the results showing that family care accounts for almost 50 percent of the overall resource burden, based on an opportunity cost valuation of carer time.

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Patient Centered Integrated Clinical Resource Management

The impact of funding systems on the IT systems of providers has been enormous and have prevented the implementation of designs to focused on the health issue of patients. The paradigm shift the Dutch Ministry of Health has taken in funding health care has a remarkable impact on the orientation of IT systems design. Since 2007 the next step is taken: the application of the funding concept on chronic diseases using clinical standards as the norm. The focus on prevention involves the patient as an active partner in the care plan. The impact of the new dimension in funding has initiated a process directed to the development of systems to support collaborative working and an active involvement of the patient and its informal carers. This national approach will be presented to assess its international potential, as all countries face the long term care crisis lacking resources to meet the health needs of the population.

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Scottish community care statistics 2000

Statistics on service provision in Scotland to older people, people with learning disabilities, people with mental health problems, disabled people, carers and other users. Provides figures on domiciliary care, day care , residential care, private nursing homes, hospitals and special needs housing for each user group.

Carer break or carer-blind? Policies for informal carers in the UK

This article examines three policy statements on informal carers published in the UK in 1999—the National Strategy for Carers, the report of the Royal Commission on Long Term Care and the note of dissent by two members of the Royal Commission. These three documents contain two rather different approaches to policy for carers. On the one hand, the National Strategy and note of dissent emphasize respite care or short-term breaks for carers, and are concerned with sustaining the well-being of carers as well as ensuring the continuation of caring itself. The Royal Commission, on the other hand, emphasizes support for the older or disabled person who is being cared for, as a means of supporting the carer, and advocates “carer-blind” services. It is argued that this policy contains within it the potential to substitute for or replace the carer and that this represents a radical new departure for social policy for carers in the UK. The advantages and disadvantages of the two policy approaches are explored. It is argued that policies for carers should include both services specifically for carers, like breaks from caring, and services provided for the cared-for person, like domestic and personal care services. Wider issues about the proper boundary between family and state care are explored.

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Personalisation for older people: residential care

The film is introduced by the manager of a residential care home for older people with dementia who talks about the importance of understanding the individual, their interests, background and personal history. The benefits of this approach are illustrated by Marjorie’s story. Marjorie has been supported and encouraged to take up her interest in music again and it has brought pleasure to her life. There is an emphasis on relationship-based, individual person-centred care, rather than a functional approach to basic personal care. This is important to maintaining dignity and well-being. The latter half of the film looks at the family and carer support that the service also provides as part of person-centred care.

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Amendment to paragraph 119 of the guidance on direct payments 2009

The instrument amends regulations 9 and 10 of the Community Care, Services for Carers and Children’s Services (Direct Payments) (England) Regulations 2009 to lift the requirement on local authorities to carry out a financial assessment when determining what amount is reasonably practicable for the direct payment recipient to pay towards securing the provision of residential accommodation.

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Perceived factors which shape decision-making around the time of residential care admission in older adults: A qualitative study

Aim: To understand the perceived factors that shape decision-making around the time of residential care admission in older people.

Method: Two qualitative methods (telephone interviews at intervals post discharge from geriatric inpatient care and face-to-face interviews with older people and their family carers) were used as part of a multiphase mixed methods study of a cohort of 144 older people discharged from medical wards in a subacute assessment, treatment and rehabilitation facility.

Results: Key topics and themes were derived from interviews: the role of the informal carer and other community supports, attitudes to decision-making and loneliness were key aspects of social context. Physical health, the experience of repeated hospital admissions and health professionals' attitudes to repeated admissions were also seen as important.

Conclusions: Social context as an essential component of older people's decisions to enter aged residential care is highlighted in this qualitative study.

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Better care, higher standards: a charter for long-term care

Aims to provide standards for long term care in South Tyneside, covering issues such as provision of information, assessment and care planning, housing, independence, health care, benefits and complaints procedures.

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Committed to caring: carer experiences after a relative goes into nursing or residential care

This article presents the key findings from a collaborative study about the experiences and support needs of carers whose relatives are admitted into a nursing or residential care home. Drawing upon data from carers' qualitative accounts, it considers carers' post‐admission roles, responsibilities and profiles, and the contribution carers make to the continued care of their relative. Carers' post‐admission caring experiences are described in detail and differences between spouse carers and carers involved in looking after a parent are identified. A temporal model depicting the complex and dynamic nature of carers' postadmission experiences is presented. The implications for policy and practice are discussed.

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Who cares? Moral obligations in formal and informal care provision in the light of ICT-based home care

An aging population is often taken to require a profound reorganization of the prevailing health care system. In particular, a more cost-effective care system is warranted and ICT-based home care is often considered a promising alternative. Modern health care devices admit a transfer of patients with rather complex care needs from institutions to the home care setting. With care recipients set up with health monitoring technologies at home, spouses and children are likely to become involved in the caring process and informal caregivers may have to assist kin-persons with advanced care needs by means of sophisticated technology. This paper investigates some of the ethical implications of a near-future shift from institutional care to technology-assisted home care and the subsequent impact on the care recipient and formal- and informal care providers. 

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Informal and formal caregivers' involvement in nursing home care activities: impact of integrated care

Aims.  This paper reports a study to investigate the relationships between informal and formal care, changing relationships over time, impact of integrated care, and theoretical and methodological lessons that can be drawn from research on this topic.

Background.  The ratio of informal to formal care provided in nursing homes varies. In many countries the predominance of traditional, formal care is being challenged by the emergence of integrated care models in which formal and informal caregivers co-operate and co-ordinate their activities to deliver tailor-made care. This move towards integrated care is likely to result in changes in the degree and nature of involvement of formal and informal caregivers in care activities. However, very little research has investigated this. Previous research is restricted to one point in time, as opposed to focussing on the changing relationships between formal and informal caregivers over time.

Methods.  The quasi-experimental design encompassed a traditional care comparison setting and an experimental setting with an integrated care intervention. At three measurement points, one before the intervention in May/June 2000 and two at 6 and 14 months after the intervention, informal and formal caregivers recorded their care activities. Informal care relationships were determined by calculating contribution rates and informal/formal care ratios for 14 activities.

Results.  Integrated care did not bring about the expected major changes. There was a limited amount of substitution of formal care with informal care. There were limited changes in the extent of dual specialization, in which informal and formal caregivers perform separate activities. There was little supplementation of formal care with informal care. Furthermore, relationships changed over time, resulting in a complex pattern of linkages at the level of separate activities.

Conclusions.  Informal caregivers contribute to many activities. The impact of integrated care on the degree and nature of involvement, however, was moderate. A possible explanation is the contextual situation for nursing home care. These findings point to the need for further research into the (changing) relationship between formal and informal carers in residential care activities and the evolution of this relationship over time.

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Respite care for caregivers and people with severe mental illness: literature review

Aim.  The aim of this study was to review research literature over the past 10 years on respite care for people affected by severe mental illness; and identify key implications for nursing practice in provision of respite care for family caregivers of people with severe mental illness.

Background.  Family caregivers play an important role in health care, but need regular breaks to maintain their own health and well-being. Respite care is one of the few services available with a primary focus on supporting family caregivers. In most developed countries the notion of respite care as an extension of the health care service has been embraced, evidenced by a growing body of literature in health and health-related disciplines.

Methods.  An initial literature search was undertaken using the key words ‘respite’, ‘short-term care’, ‘shared care’ and ‘day care’ in major electronic databases for nursing, psychiatry, psychology and sociology literature between 1967 and 2002, identifying 704 articles. Closer examination of the literature from 1993 to 2002 on gaps and trends in respite care for people affected by severe mental illness was conducted. This is discussed in the context of the broader literature, particularly on dementia, where the mainstream research on respite care is found.

Results.  The majority of family caregiving studies identified a need for greater quality, quantity, variety and flexibility in respite provision, and the literature has remained largely silent in relation to those affected by severe mental illness. There are contradictory findings on outcomes of respite care services and a lack of controlled empirical studies and evaluative research on effectiveness.

Conclusions.  Respite care is beneficial for caregivers, there is significant unmet need in provision of services for the mentally ill, and greater flexibility and the needs of caregivers should be recognised and addressed.

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Moving toward Medicare home health coverage for people with Alzheimer’s disease

Medicare home health care policy does not incorporate research evidence of effective palliative home care interventions for Alzheimer's disease and dementia patients and caregivers. This article examines the dissonance between the needs and burdens of Alzheimer's disease patients and caregivers, research results on medical and palliative care interventions, and medicalized public policy in the Medicare home health benefit. The article asserts existing research establishes a prima facie case exists for the federal government to fund a Medicare Palliative Home Care for Alzheimer's disease demonstration project. The article cites the success of the Medicare Hospice Demonstration project and Hospice Medicare Benefit in reducing costs and improving client quality of life as precedent and a model for Alzheimer's disease. Other research implications are identified.

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Why carers of people with dementia do not utilise out-of-home respite services

While many people with dementia require institutional care, having a co-resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out-of-home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community-dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009–January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non-use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non-use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non-use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out-of-home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.

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Managing behavioural and psychological symptoms in dementia

Behavioural and psychological symptoms of dementia (BPSD) are common and problematic in clinical practice and represent a significant part of the day-to-day workload of the old age psychiatry team in hospital, institution and community settings. Improving recognition and management of BPSD can have a positive impact on the quality of life of patients and their carers and potentially delay the transition from home to institutional care.

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Including older people with dementia in research: challenges and strategies

This paper examines key challenges and strategies for including older people with dementia in an ethnographic study of quality of life in institutional care settings. The methods of interview and observation are described in relation to meeting four research challenges: verbal communication impairment, memory loss, decision-making capacity, and emotional disposition. A range of strategies for privileging the voice of the person with dementia is recommended which include: using different methods be spoke to each person with dementia; greater flexibility and time; preliminary meetings with the person with dementia; discussions with formal and informal carers; and research training. The researchers also conclude that the use of observation and interview are 'meaning-making occasions' which are qualitatively different but equally valuable for understanding quality of life in care settings.

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Adult social care: a scoping report

A project to review the law relating to the provision of adult social care in England and Wales. The legislative framework for adult residential care, community care, adult protection and support for carers is inadequate, often incomprehensible and outdated.  It remains a confusing patchwork of conflicting statues enacted over a period of 60 years.  There is no single, modern statute to which service providers and service users can look to understand whether (and, if so, what kind of) services can or should be provided. The overall aim of the project is to provide a clearer and more cohesive framework for adult social care.  This would help to ensure that service users, carers, social care staff, health professionals and lawyers are clear about rights to services and which services are available.  It will also aim to modernise the law to ensure that it is no longer based on out-dated principles. The first phase of this project will be a scoping report.  This will aim to delineate clearly the scope of the project and provide it with a detailed agenda for reform.

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