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The following resources examine crisis in the supply of care, and in carers’ capacity to continue caring.

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You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

Factors that affect the relationship in the family that takes care of a child with disability: Pilot study

Family relationships are related to the cohesion between family members and their interaction and the ability to solve everyday problems and crisis situations. The family is influenced by internal and external factors that affect relationships between family members. These factors also affect intimate life of partners. The family naturally faces a developmental and situational crisis. These crises are milestones that can impact the future life of the family. In the family which takes care of a child with disabilities, these milestones are accented by cumulative crises and daily confrontation with child's disability. The paper provides an overview of these crisis factors, which may affect the relationships within family members. The data were collected using a pilot survey. The sample were parents of a child with disability. The content analysis of records from semi-standardized interviews with parents and observation realized during special pedagogical interventions represents a list of the most common stressors and situational factors affecting family relationships of the target group that may result in a crisis. The common developmental crises, caused by life changes and the requirements for social role acceptance, are being strengthened by the long-lasting effects of stressors on families of children with disability. This is in particular the role of the caregiver, the demands related to the care of a child with disability, family cohesion and coping strategies. The results of the pilot study will be used in pre-research of a dissertation.

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Hospital to Home: A Quality Improvement Initiative to Implement High-fidelity Simulation Training for Caregivers of Children Requiring Long-term Mechanical Ventilation

Background: Preparing families of children requiring long-term mechanical ventilation (LTMV) to manage medical emergencies at home is challenging. Opportunities for family caregivers to rehearse crisis management in a controlled setting before discharge are limited.

Objective: We aimed to create a multimodal discharge preparedness curriculum, incorporating high-fidelity simulation training, to prepare family caregivers of children with complex medical conditions requiring long-term mechanical ventilation. We sought to determine which curricular elements were most helpful and whether this curriculum impacted the rate of readmissions within 7 days of hospital discharge.

Methods: The curriculum included instructional videos, printed handouts, cardiopulmonary resuscitation training, and two mandatory high fidelity simulation scenarios depicting tracheostomy- and ventilator-related emergencies. Teams of one to three family caregivers per patient managed each scenario. A video-based debriefing focused on identifying and closing performance gaps. Participants rated their perceptions regarding each curricular element and its relative impact on their preparedness for discharge.

Results: 87 family caregivers completed the curriculum. Simulation-enhanced curriculum was well-received by participants. Participants reported that post-simulation debriefing was the most beneficial component. We observed a trend toward reduced readmissions within 7 days of discharge since implementation of our revised curriculum.

Conclusion: Simulation training can be incorporated into discharge training for families of children requiring LTMV. Rehearsal of emergency management in a simulated clinical setting increases caregiver confidence to assume care for their ventilator-dependent child. 

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Families' Experiences of End-of-Life Care at Home for Iranian Older Adults: A Qualitative Study

Aim: While the care of dying elderly patients at home is very complex and ambiguous, it has not been studied in Iran so far. Hence, this study aimed to explore the experience of a representative sample of the Iranian family caregivers from the end-of-life (EOL) care for their elderly relatives. Methods: The present study was conducted using a qualitative content analysis method. Twelve family caregivers caring for the chronically ill dying elderly were selected using purposeful sampling. The purposive sampling method was applied with an extreme variation in sampling, and data gathering was pursued until data saturation was achieved. Semi-structured interviews were utilized for data collection. Interviews were recorded and instantly transcribed verbatim. Inductive content analysis was used to analyze the data. Results: Four core themes and 13 subthemes emerged from the experiences of family's caregiver as fallow: (1) Committed to care: This is related to encounter with the end of stage disease of the relative, accepting the care role and priority of care, (2) challenges of Care: Caregivers, despite their efforts, provided ineffective care, so they sought to empower themselves and at the same time provide compassionate care, (3) the crisis of care including the complexity of care, fear, and wandering, helplessness, devastating tension, and vacuum of supporting, and (4) conditions after death that family members involved with a sense of loss and Tension control. Conclusion: When families had to take care of their elderly patients at home, although their wish to give the best care, they are completely powerless to provide care, and in an atmosphere of the vacuum of supporting, they encounter severe challenges and crisis. It is vital that palliative care centers in the society are arranged to care for EOL elderly with comprehensive insurance services.

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The Family Caregiving Crisis Meets an Actual Pandemic

The coronavirus disease 2019 (COVID-19) pandemic presents unique challenges to those who work with the seriously ill population, including both health care providers and the family caregivers providing unpaid care. We rely on this lay workforce as health care routinely transitions care to the home, and now more than ever, we are depending on them in the current pandemic. As palliative care and other health care providers become overwhelmed with patients critically ill with COVID-19, and routine care becomes delayed, we have a charge to recognize and work with family caregivers. Our commentary provides rationale for the need to focus on family caregivers and key considerations for how to include them in pandemic clinical decision making. 

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"Tipping point" concept analysis in the family caregiving context

Aim: Analyze the concept "tipping point" in the older adult family caregiving context to further knowledge about caregiving families, enhancing transdisciplinary theory, research, and practice. Background: While used commonly in some disciplines, how "tipping point" has been used in health care, generally, and in relation to caregiving families, specifically, is less clear. This project was conducted to offer conceptual clarity to tipping point. Design: Walker and Avant's framework. Data Source: Searches of scholarly literature in PsycINFO, CINAHL, and PubMed using the search term "tipping point" in either title or abstract. Review Methods: Definitions used were extracted; instances when the concept was implied but the actual term "tipping point" was not used and contexts where the term was used or implied were identified. Results: The composite definition of a caregiving tipping point is a seemingly abrupt, severe, and absolute change event involving either the older adult or caregiver(s), or both that indicates a breakdown in the status quo of the caregiving system. Conclusions: Transdisciplinary research, care, and policy should treat caregiving families as complex systems, use longitudinal assessments, and include colloquial communication. Early detection of impending tipping points will provide family‐centered decisional support and enhance families' quality of life and safety.

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Perceptions of a Home Hospice Crisis: An Exploratory Study of Family Caregivers

Background: Crises that occur in home hospice care affect family caregivers' satisfaction with care and increase risk of disenrollment. Because hospice care focuses on achieving a peaceful death, understanding the prevalence and nature of crises that occur in this setting could help to improve end-of-life outcomes. Objective: To ascertain the prevalence and nature of, as well as factors associated with crises in the home hospice setting as reported by family caregivers. Design: A multiple-method approach was used. Content analysis was employed to evaluate semistructured interview responses collected from caregivers. Potential associations between crisis occurrence and caregiver and patient factors were examined. Setting/Subjects: Family caregivers whose care recipients were discharged (dead or alive) from a nonprofit hospice organization. Measurements: Participants were asked to identify any crisis - defined as a time of intense distress due to a physical, psychological, and/or spiritual cause - they or the patient experienced, while receiving home hospice care. Results: Of the 183 participants, 76 (42%) experienced a perceived crisis, while receiving hospice care. Three types of crises emerged: patient signs and symptoms (n = 51, 67%), patient and/or caregiver emotional distress (n = 22, 29%), and caregiver burden (n = 10, 13%). Women were more likely than men (46% vs. 26%, p = 0.03) to report a crisis. Conclusions: A large minority of caregivers report perceiving a crisis while their loved one was receiving home hospice care. Physical (symptoms), psychological (emotional distress) function, and caregiver burden constituted the crises reported. Further studies are needed to better understand and address these gaps in care.

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Women and the Crisis of Care in the United States

The need for long-term care (LTC) services has been growing, and is escalating with the aging of the baby boomers. Women are the main providers and recipients of care in the formal (paid) and informal (family) LTC system, meaning they bear the brunt of the gap between the need for care and available resources. Without strong public resistance, this gap is likely to be filled by relying upon family care, mainly provided by women. This re-familization of care could turn our crisis of care into a catastrophe for low- and middle-income families.

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Aging, Disability, and Informal Caregivers: A Cross-sectional Study in Portugal

Objectives: Aging is pushing states to rethink long-term care policies in several dimensions. This study aims to characterize the reality of dependent older people regarding their demographic and health characteristics, to describe their informal carers and understand the availability of informal care.; Methods: A cross-sectional study was developed in Portugal in 2013. Descriptive statistical analyses and binary logistic analysis were conducted.; Results: Results show that the informal long-term care sector is primarily aimed at older people with severe limitations in their activities of daily living and at the chronically ill, particularly older women. Additionally, 39.5% of dependent older persons do not have informal care and only receive informal aid in cases of extreme need.; Discussion: Results show a critical situation for both social groups (older persons and caregivers) and the prospect of an alarming situation in the near future (aging and reduced availability of informal caregivers) unless a new approach for long-term care is developed.

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Changing moralities: Rethinking elderly care in Spain

Demographic and social changes in Europe and OECD countries have increased the number of dependents in recent decades, challenging the organisation of health systems and raising calls for re‐definition of long‐term care services. In Spain the crisis of care has challenged a care regime based strongly on the family. Recent social policies have attempted to address this challenge. This article analyses the ideal of family care expressed by women who have traditionally played the role of caregivers. Reflecting a disruption of previously held moral attitudes throughout society, elderly women manifest new expectations in relation to their own care, redefining the scope of filial obligation and linking it to a renewed notion of independency and autonomy. However, in the current context of financial crisis, family care appears not as a choice, but an undesirable consequence of the lack of public policies. The study applies a theoretical approach based on the anthropology of moralities. 

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The medicines management needs of carers during an episode of mental health crisis

The article reviews the report "National Mental Health Development Unit 2010" highlighting the importance of involving carers particularly in crisis resolution and home treatment teams (CRHT), in managing medicines during a mental health crisis. The authors note the report's recommendation of developing training packages to help carers understand issues and enhance their understanding of mental health conditions and treatment options. They also recommend investigating the needs of young carers.

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A 10-year plan for quality living for people with disabilities and their carers

Background: The concerns of older carers of an adult with disabilities have been well documented. The sudden incapacity or death of the carer can result in a crisis response rather than a planned transition to a chosen sustainable alternative care arrangement for the person with disability. Building on previous ‘Futures Planning’ projects, the aim of this project was to enrich the lives of people with disabilities and their carers whilst ensuring that their wishes for the future are documented to provide security.

Materials and Methods: This article reports on information sessions and workshops that were held for people with disabilities, their carers and staff, and the training sessions for staff for this project.

Results: The sessions underlined the fact that people with disabilities want to enjoy the same experiences that most other people enjoy. Drawing on the ideas and suggestions from participants, the ‘Futures Planning’ documents were modified to meet the aims of the Quality Living project, making them suitable for planning for quality living for the carer and the person with a disability for the next 10 years.

Conclusions: Findings supported the concept that planning allows people with disabilities and their carers to take steps to achieve their dreams.

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The experience of caring for older people with dementia in a rural area: using services

Reports on findings from the carer component of the Gwynedd Dementia Study. It is based on carer interviews, using quantitative and qualitative data. It describes the carers, their perceptions of their dependents' problems, the common challenges they face, their experiences of formal and informal support and, with reference to the literature, identifies implications for policy and practice. Levels of formal service inputs were low, but most of the carers appeared to receive the services they needed. Problems are primarily associated with crisis support and long-term care is accepted reluctantly. Suggests that community care dementia specialists could play a supporting role for carers.

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Who's there and who cares: age as an indicator of social support networks for caregivers among people living with motor neurone disease

This paper explores the social support networks available to the informal carers of people living with motor neurone disease (MND). An ethnographic case study was undertaken using ecomapping, observation and conversational interviews to collect data from 18 primary carers of people living with MND. Interviews took place in participants’ homes in metropolitan, regional and rural locations. Participants discussed the content of their support network and drew lines between individuals to indicate the type and strength of relationship. Changes to the network were depicted on ecomaps during subsequent interviews. While health policy-makers assume that healthy social capital exists in Australian communities and that social cohesion will ensure active and available support networks in times of illness or disability, data from this exploratory study indicated that this was not consistently the case. Support networks varied in size and composition; however, age was identified as a discriminator of the availability and consistency of support. People in older age groups identified more diverse but consistent support systems while people in younger age groups reported more fluctuations in the strength of relationships and declines in support as caregiving became more demanding. Individual assessment of support networks at regular intervals in the caregiving trajectory is vital for all carers. However carers in younger age groups may need specific support to manage the psychological crises that occur and more access to paid care. Older carers may need consistent support to handle more of the instrumental aspects of care and assistance to mobilise their support networks. Community workers should be alert to the possible need for crisis intervention when tensions in relationships threaten carers’ ability to provide effective care.

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Caring for the carers : the characteristics of district nursing support for family carers

This paper presents findings from an ethnographic study that examined how qualified district nurses’ conceptualized their role in relation to family carers and how they performed this aspect of their role.

A participant observational study involving fieldwork and in-depth interviews with six district nursing teams was undertaken over a 12-month period. Interview transcripts and fieldnotes were analysed by drawing upon the principles of dimensional analysis.

District nurses acted on the assumption that family carers would, by choice or default, provide care. Family carer support was conceptualized as a means of promoting self-care and the patient’s independence from nursing services. The rationale for providing family carer support was based largely on service capacity rather than on carer needs and preferences. Six characteristics of district nursing support for carers were identified: enabling, supporting, mediating, care substitution, crisis prevention and crisis intervention. Family carers were not recipients of district nursing support in their own right but were dependent upon the cared-for person receiving nursing care. This in turn was conditional upon others (general practitioners and hospitals) making appropriate patient referrals. Family carer support was also conditional upon effective communication and family carer receptiveness.

As the scope of home-based nursing continues to increase, district nurses need to take a more active stance in providing family carer support and adopt a family rather than patient-focused approach in order that family carers might be supported more effectively.

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Care giving offspring to aging parents:: How it affects their marital relations, parenthood and mental health

The study examined the effect of direct and indirect stresses on the mental health of offspring caring for an aging parent. The study is based on Pearlin, Lieberman, Menaghan, and Mullan's (1981) Stress Development Model. The research examined 345 subjects, men and women aged 40-59 who filled a questionnaire sent by post within their workplace. The research findings show that the various stresses of the caregiver role are mutually connected and have a significant positive effect on the mental health of caregiving offspring. Another finding shows that the extended family support variable acts as a buffer on the caregiving burden on the adult child.

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Who's going to care?

This chapter explores the provision of care and considers possible future developments and the challenges around provision. We begin with a discussion of human resources, posing the question of whether the UK can satisfy the growing demand for carers, both informal and professional. We specifically examine the different types of carer: the self-carer, informal carers and professionals – social carers, nurses, and doctors, and the implications for health and social care policy and consider the implications for these carer roles in society. We also look at current policy on care in the UK. 

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The burden of informal care for Alzheimer's Disease: carer perceptions from an empirical study in England, Italy and Sweden

Dementia of the Alzheimer type and related disorders greatly impact not only on the lives of sufferers but also on their unpaid informal carers, who usually are spouses or children. Carers are more likely to suffer from stress, take prescribed medication and visit their physicians compared with non-carers (Burns and Rabins, 2000). Social isolation that can occur in caregiving may mean that carers may only come to the attention of formal support services when a crisis occurs and informal care arrangements break down (Wenger, 1994). Increasing our understanding of the burden on informal care, and how this is affected by the use of support services, may contribute to the future development of services. As part of a European project (Sassi and McDaid, 1999), an empirical study was undertaken to measure aspects of the burden borne by informal carers of people with probable Alzheimer's disease living in the community in England, Italy and Sweden. Qualitative data on the caring experience and its economic impact were [...]

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Confronting the care penalty: the case for extending reasonable adjustment rights along the disability/care continuum

Informal caring for adults with disabilities is a source of unacceptable disadvantage in employment, finances, social inclusion, and health; here termed the ‘care penalty’. This penalty can be appropriately tackled through equality law, making care a ground for unlawful discrimination. Carers are not adequately protected from indirectly discriminatory disadvantages by other grounds such as sex and disability. Nor are carers adequately protected by carer-specific provisions such as the UK right to request flexible working. This paper argues that a reasonable adjustment right should be available to carers. It challenges the model of reasonable adjustment as a special right, over and above other non-discrimination measures, so restricted to persons with disabilities. Instead, it is here argued that reasonable adjustment is a compromise – a lesser measure adopted to reduce the duties arising from protection from indirect disability discrimination. Once viewed as a compromise, its extension to carers becomes practicable, revealing that disability and care form a continuum, along which each of us dip in and out during our lives. The looming ‘care crisis’ stemming from demographic change means that states have a significant financial incentive to make work compatible with increasingly common care duties.

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Caring for adults in the EU: work-life balance and challenges for EU law

Unpaid carers of adults, as a group, have, until recently, been largely neglected by the EU. While a number of provisions of EU law – including anti-discrimination measures and protections for part time workers – may benefit (some) carers of adults in the workplace, the existing package of work–life balance regulation falls well short of a coherent approach to addressing the needs of this group. Growing concern about a crisis in social care across member states, linked to an ageing demographic, has recently focussed attention on inadequacies in the formal care sector; on the vital economic contribution of unpaid care; and on a projected rise in the need for care coupled with a decline in the availability of informal care as the population ages and family structures change. It has prompted interest both in the need to develop the formal care sector, with the opportunities this may present to create employment, and in the need to support ‘informal’ carers in the workplace. This paper explores the various policy drivers for EU regulation to support informal carers in the workplace and consider the potential difficulties in establishing a coherent legal response.

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Social capital in a lower socioeconomic palliative care population: a qualitative investigation of individual, community and civic networks and relations

Background: Lower socioeconomic populations live and die in contexts that render them vulnerable to poorer health and wellbeing. Contexts of care at the end of life are overwhelmingly determined by the capacity and nature of formal and informal networks and relations to support care. To date, studies exploring the nature of networks and relations of support in lower socioeconomic populations at the end of life are absent. This qualitative study sought to identify the nature of individual, community and civic networks and relations that defined the contexts of care for this group.

Methods: Semi-structured qualitative interviews were conducted with 16 patients and 6 informal carers who identified that they had social and economic needs and were from a lower socioeconomic area. A social capital questionnaire identifying individual, community and civic networks and relations formed the interview guide. Interviews were audio-taped, transcribed and analysed using framework analysis.

Results: Participants identified that individual and community networks and relations of support were mainly inadequate to meet care needs. Specifically, data revealed: (1) individual (informal caregivers) networks and relations were small and fragile due to the nature of conflict and crisis; (2) community trust and engagement was limited and shifted by illness and caregiving; (3) and formal care services were inconsistent and provided limited practical support. Some transitions in community relations for support were noted. Levels of civic and government engagement and support were overall positive and enabled access to welfare resources.

Conclusion: Networks and relations of support are essential for ensuring quality end of life care is achieved. Lower socioeconomic groups are at a distinct disadvantage where these networks and relations are limited, as they lack the resources necessary to augment these gaps. Understanding of the nature of assets and limitations, in networks and relations of support, is necessary to inform interventions to improve end of life care for lower socioeconomic populations.

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Older carers of adults with a learning disability confront the future: Issues and preferences in planning

The Valuing People White Paper (Department of Health, 2001) requires services to secure a plan for all service-users with learning disabilities living with older carers and promises them and their families more choice and control over how and where they live. This paper examines the views of the older carers (aged over seventy) of sixty-two adults with a learning disability about planning for the future. Fifty-six took part in interviews in their own homes and six completed a questionnaire. All carers were white and recruited from one local authority in response to the requirements of the White Paper. Findings indicate that a significant proportion (thirty-four—55 per cent) is either not ready or is unwilling to make future plans. Barriers to planning include a perceived lack of need due to the existence of two carers, a lack of awareness of timescales involved in securing housing, difficulties in letting go, a lack of confidence in available housing options, and the existence of mutually supportive relationships. The findings show a need for a proactive approach to information and support provision to enable these families to work through a process of making plans for the future. This is essential to prevent the need for emergency placements in response to crisis and in turn to ensure that adults with learning disabilities have genuine choice and involvement in how and where they live.

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Children in exclusion zone

The author argues that funding for young carers' support should be ring-fenced to avoid that possibility that British councils may use the budget to fend off the next budgetary crisis. He describes young carers as children who take on responsibility for their families, acting as main carers for their disabled or chronically ill parents and siblings. The government has funded initiatives to support young carers. However, he notes that government aims to transfer this funding to local authorities.

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Crisis intervention: a practice model for people who have dementia and their carers

Crisis intervention represents a neglected intervention model in contemporary UK social work practice. It is often misunderstood and maligned as simply a reaction to inadequate resources. This paper explores the merits and power of crisis intervention for positive social work practice with people who have dementia and their carers.

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Hospital versus home care for the acutely mentally ill? Preferences of caregivers who have experienced both forms of service

Objective: Demonstration studies of community treatment as an alternative to hospitalization have reported high degrees of satisfaction by family carers. We aimed to determine the extent of carer preference for hospital versus community treatment for acute mental illness in a routine setting where carers had experienced both service types.

Method: Patients who had contact with both a hospital inpatient service and a Crisis Assessment and Treatment (CAT) team within the previous 5 years were identified. Seventy-seven family carers of these patients completed a questionnaire which identified their preference for services, and psychological and demographic variables likely to be predictive of their choice.

Results: Only half the carers preferred a CAT service to treat their relative in the event of a future relapse. Psychological variables were better predictors of choice than were demographic variables.

Conclusions: The proportion of caregivers who prefer community treatment for acute psychosis may be smaller than previously thought. The lower carer satisfaction found here may be associated with the short-term interventions of Victoria's CAT teams, the severity of acute relapses and the duration of the patient's mental health problem.

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What to tell dementia caregivers: the rule of threes

Objectives: To determine and prioritise what information dementia caregivers wish to know at the time of diagnosis and later on in the illness, and in what form this information should be presented.

Method: 100 carers were recruited from community mental health teams (CMHT) and a memory clinic (MC). A semi-structured Carer Interview was administered covering possible symptoms and management.

Results: Carers requested as much information as possible. There was no significant difference between CMHTs and the MC. After carers prioritised the information they wished to receive, we proposed a ‘rule of threes’. At diagnosis, carers want information about what dementia is, medications available and behavioural and psychiatric symptoms of dementia. In an early follow-up appointment, they want information about services, the course of the illness and what to do in a crisis. In a later follow-up appointment, they want information about support groups, benefits, and financial and legal issues. At a later stage, they want information about psychological therapies, the effects of the illness on carers and complementary treatments. Most carers wish to receive information from a health professional, backed up by written information.

Conclusions: The ‘rule of threes’ enables health professionals to make informed decisions about primacy of information and strategies to prevent carers becoming overloaded. Information should also be provided in written form and from support groups. Copyright © 2003 John Wiley & Sons, Ltd.

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Family caregivers' experiences of relinquishing the care of a person with dementia to a nursing home: insights from a meta-ethnographic study

Many people with dementia are cared for in their homes by family caregivers. As the dementia progresses, admission of the family member to a nursing home becomes inevitable. The aim of this meta-ethnographic study was to describe caregivers’ experiences of relinquishing the care of a family member with dementia to a nursing home. A systematic literature search of PubMed, Cinahl and PsychInfo, between the years 1992 and 2012, was performed, and 10 qualitative articles, based on 180 family caregivers’ experiences, were included. The family caregivers’ described their experiences as a process that went from being responsible for the decision, through living with the decision, adjusting to a new caring role and having changed relationships. They felt unprepared and lonely with these changes. They experienced loss, guilt and shame, but also feelings of relief. Their roles in the nursing home environment were to make sure that the individual needs of the person with dementia were respected and to monitor the quality of care. They wished to maintain their relationship with the person with dementia and to establish meaningful relationships with caring staff. The process of relinquishing care is similar to a crisis process, which starts with a turning point, followed by a coping face and finally the outcome of the process. The adaption to the new situation can be facilitated if the family caregivers are recognised as partners in the care of the person with dementia. The family caregivers’ unique knowledge of their relatives’ previous life story should be acknowledged in both care planning and daily care. Welcoming family caregivers to regular meetings with staff can contribute to increase the feeling of partnership. Offering staff clinical supervision could be one way of preparing them to deal with the emotional strain reported by family caregivers.

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The views of relatives of young people with psychosis on how to design a Relatives Education And Coping Toolkit (REACT)

Background: Relatives of people with psychosis experience high levels of distress. Interventions are needed which can reduce distress and are widely available.

Aims: This study presents the views of relatives on how to design a supported self-management intervention for relatives.

Method: Four focus groups were carried out and relatives were asked for their views on the content, format, support required, likely barriers and potential impact on the outcome of a self-management toolkit.

Results: Relatives were generally very positive about the development of a toolkit. Relatives had clear ideas about the design, emphasising particularly that it needs to be comprehensive, modular, supported and able to translate general information into the specific detail they require for their family member. Many of the ideas informed the development of Relatives Education And Coping Toolkit. Some suggestions, such as multiple modes of delivery, earlier access to the toolkit in primary care and peer support from other relatives, were not possible in this study but should be considered for future development.

Conclusions: Relatives supported the development of a supported self-management toolkit intervention. They also emphasised the importance of offering such interventions alongside other valued aspects of services including face-to-face contact with clinicians, peer support from other relatives and crisis support.

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‘The sooner you can change their life course the better’: the time-framing of risks in relationship to being a young carer

In this article, we compare accounts given by young carers and specialist support workers about the riskiness of becoming a carer relatively early in life. We argue that since the mid-1990s, the policy response has problematised the comparatively early adoption of a caring role as a risk factor for future personal development. This temporal issue has become societally organised around concern about NEETs (young adults not in education, employment or training). Such a concern is predicated on cultural assumptions, now being undermined in response to economic crisis, about the existence of a critical age for transition to adulthood, successful navigation of which requires a time-limited period of personal freedom. Our findings suggest that, whereas support workers mostly see young caring in terms of risks to future prospects, young carers themselves identify not only current stresses, but also personal gains, from their experiences. Instead of categorising the timing of their caring as a source of risk, young carer respondents questioned service shortcomings which they felt made it harder for them to cope in the present, particularly inadequate social service support for relatives with disabilities and insensitivities in the education system. They did not see service providers as helping them to manage their futures. We locate this tension in risk social science debates about individualisation, transition to adulthood in late-modern society and risk management for those deemed vulnerable.

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Illness careers and continuity of care in mental health services: a qualitative study of service users and carers

Continuity of care is considered by patients and clinicians as an essential feature of good quality care in long-term disorders, yet there is general agreement that it is a complex concept and the lack of clarity in its conceptualisation and operationalisation has been linked to a deficit of user involvement. In this paper we utilise the concept of the ‘patient career’ to frame patient accounts of their experiences of the mental health care system. We aimed to capture the experiences and views of users and carers focusing on the meanings associated with particular (dis)continuities and transitional episodes that occurred over their illness career. As part of a large longitudinal study of continuity of care in mental health a sub-sample of 31 users was selected together with 14 of their carers. Qualitative interviews framed around the service user's illness career explored general experiences of relationship with services, care, continuity and transition from both user and carer perspectives. Five key themes emerged: relational (dis)continuity; depersonalised transitions; invisibility and crisis; communicative gaps and social vulnerability. One of the important findings was the fragility of continuity and its relationship to levels of satisfaction. Supportive, long-term relationships could be quickly undermined by a range of factors and satisfaction levels were often closely related to moments of transition where these relationships were vulnerable. Examples of continuity and well managed transitions highlighted the importance of professionals personalising transitions and situating them in the context of the daily life of service users. Further research is required to identify how best to negotiate these key points of transition in the future.

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'Confidentiality smokescreens' and carers for people with mental health problems: the perspectives of professionals

This paper reports on some of the findings from a collaborative study funded by the Big Lottery and led by Crossroads Caring for Carers about carers for people with mental health problems. The protection and use of information in mental health are firmly rooted in ethics and professional codes, law and policy, as well as values and professional practice. While government initiatives have attempted to augment the role and rights of carers, policy guidance involving information sharing between professionals and carers has failed to deal with the practical dilemmas of patient confidentiality. Professional codes and training neither explore nor develop the moral and ethical ground that stands between the service user's need for privacy and the carer's need for information. Policy and training guidance on confidentiality is scattered, ambiguous, confusing for professionals and inconsistent. There is uncertainty in practice about the information that professionals may share, and many professionals do not take into account carers’ rights, not least to basic information to help them care for service users. ‘Confidentiality smokescreens’ may sometimes lead to information being withheld from carers. Professionals sometimes find it easier and safer to say nothing. In order to explore these issues from the perspectives of professionals, 65 participants were interviewed. The sample included directors and senior staff from the health, social care and voluntary sectors. Respondents were asked to comment at length on their understanding of confidentiality and information sharing with carers. Findings highlight confidentiality smokescreens that erect barriers that limit effective information sharing; issues involving confidentiality, risk management and carers in crisis; examples of good practice; and the need for the training of professionals on confidentiality issues and the rights of carers. This paper explores the challenge of confidentiality smokescreens from the perspective of professionals, and draws out implications for professional practice and training.

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Employment and Informal Care: Sustaining Paid Work and Caregiving in Community and Home-based Care

Informal care provides the often hidden foundations of policies promoting care in the community and Ageing in Place. This paper examines the current impasse concerning those who are employed and seek to provide care, canvassing current and future possibilities for finding a way through the existing conflict between sustaining employment and providing informal care in the home. Focusing on the issues that emerge regarding support of older (aged) care recipients, the paper first considers the demographic, economic and democratic and governmental policy causes of the current problems. It then examines the emerging care gap expressed through the joint crisis of informal and formal care. The final section considers the solutions proposed to help re-embed care in the societies of the 21 century. These include developments related to the workplace and employment, as well as solutions concerned with providing extra services, expanding the care workforce, paying family caregivers and using technology. 

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Attitudes to telecare among older people, professional care workers and informal carers: A preventative strategy or crisis management?

This paper reports findings from an attitudinal survey towards telecare that emerged from 22 focus groups comprising 92 older people, 55 professional stakeholders and 39 carers. These were convened in three different regions of England as a precursor to telecare service development. The results from this study suggest that informants’ views were shaped by prior knowledge of conventional health and social care delivery in their locality, and the implication is that expectations and requirements with respect to telecare services in general are likely to be informed by wider perceptions about the extent to which community care should operate as a preventative strategy or as a mechanism for crisis management.

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Diabetes Management Using Modern Information and Communication Technologies and New Care Models

Background: Diabetes, a metabolic disorder, has reached epidemic proportions in developed countries. The disease has two main forms: type 1 and type 2. Disease management entails administration of insulin in combination with careful blood glucose monitoring (type 1) or involves the adjustment of diet and exercise level, the use of oral anti-diabetic drugs, and insulin administration to control blood sugar (type 2).

Objective: State-of-the-art technologies have the potential to assist healthcare professionals, patients, and informal carers to better manage diabetes insulin therapy, help patients understand their disease, support self-management, and provide a safe environment by monitoring adverse and potentially life-threatening situations with appropriate crisis management.

Methods: New care models incorporating advanced information and communication technologies have the potential to provide service platforms able to improve health care, personalization, inclusion, and empowerment of the patient, and to support diverse user preferences and needs in different countries. The REACTION project proposes to create a service-oriented architectural platform based on numerous individual services and implementing novel care models that can be deployed in different settings to perform patient monitoring, distributed decision support, health care workflow management, and clinical feedback provision.

Results: This paper presents the work performed in the context of the REACTION project focusing on the development of a health care service platform able to support diabetes management in different healthcare regimes, through clinical applications, such as monitoring of vital signs, feedback provision to the point of care, integrative risk assessment, and event and alarm handling. While moving towards the full implementation of the platform, three major areas of research and development have been identified and consequently approached: the first one is related to the glucose sensor technology and wearability, the second is related to the platform architecture, and the third to the implementation of the end-user services. The Glucose Management System, already developed within the REACTION project, is able to monitor a range of parameters from various sources including glucose levels, nutritional intakes, administered drugs, and patient’s insulin sensitivity, offering decision support for insulin dosing to professional caregivers on a mobile tablet platform that fulfills the need of the users and supports medical workflow procedures in compliance with the Medical Device Directive requirements.

Conclusions: Good control of diabetes, as well as increased emphasis on control of lifestyle factors, may reduce the risk profile of most complications and contribute to health improvement. The REACTION project aims to respond to these challenges by providing integrated, professional, management, and therapy services to diabetic patients in different health care regimes across Europe in an interoperable communication platform.

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Supporting carers to care in a crisis: an analysis of additional service provision essential to carers of people with learning disabilities

Research into how unpaid carers for people with learning disabilities cope with 'crisis' in their lives and the lives of those they care for was commissioned by Gwalia Housing in Wales. Twenty four carers who had experienced a crisis situation were interviewed. Although carers feedback found great variation in carers experience and definitions of crisis, the most frequent theme was that a crisis was something that stopped carers carrying out their duties. Carers were also asked about their experience of services and how they could help in crisis. The article concludes with a number of recommendations for practice.

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Planning for the future with adults with a learning disability living with older carers

Planning for the future for those adults with a learning disability who live with older carers is an important aspect of the White Paper Valuing People (DoH, 2001). Indeed, such planning is essential if crisis situations are to be avoided, particularly the double shock to service users of losing their home at a time when they are also bereaved. Most research about future planning has tended to focus on the perspective of the family carer rather than that of the service user. To rectify this situation, this paper considers the findings of a project which directly sought the views of adults with a learning disability, including their experiences of living with their older carers and planning for their future housing and support. The findings demonstrate that adults with a learning disability are very aware of the likelihood of an end to family care and that they have preferences about their future housing and support. However, planning for the future can be difficult because of the mutually supportive relationships that often exist in these families.

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The changing nature of family relationships in middle and later life: parent-caring and the mid-life developmental opportunity

Demographic trends have created a situation in which relationships between family members endure over long periods of time, sometimes in ways that are as yet undefined by psychological theories. Clinical social workers are called upon to help these families. This paper examines how these relationships are affected in middle-class families when elders become frail and need care, and families become “stuck.” Current literature about adult and later life development as well as clinical examples will be cited to illuminate this discussion. The paper will define the developmental tasks that mid-life adults and elders must traverse to manage the demands care giving poses. Optimally, reciprocity and intergenerational understanding can result from careful clinical management of this life crisis within particular populations that are not burdened by concerns about financial survival.

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Don't let carers slip off the radar

The article discusses the importance of supporting carers in Great Britain. It states that supporting carers is cost-effective because it prevents crisis intervention, unfitting hospital admission, and delayed transfer of care .It also mentions that if they are not supported, their physical and mental health will be at risk and young carers will have difficulty at school.

Carers forced to fill gaps but receive little in return from councils

After a damning report [The state of social care in England 2005-6] which revealed the increasing burden on friends and family members who support people with care needs, Amy Taylor, Mary Garboden and Simeon Brody look at the reasons behind the crisis and whether it is retrievable. 

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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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Adults with a learning disability living with elderly carers talk about planning for the future: aspirations and concerns

The majority of adults with a learning disability live with family carers, many of whom are ageing and have support needs of their own. Planning for the future thus becomes the key to preventing a crisis situation when family care is no longer viable because of death or ill health. Existing knowledge and practice are largely based upon the perspective of professionals and carers. This study explores the views, aspirations and concerns of adults with a learning disability, about living at home and planning for the future. Findings show that participants were very aware of the need for alternative housing or support in the future and had clear preferences about their future options. However, they also showed extensive concern for their family carers and this often impacted on their willingness to plan for the future or to move to alternative housing. Their demonstrable awareness of the inevitable death or ill health of family carers, and willingness to engage with the implications, emphasize the importance of involving adults with a learning disability in planning for their future, as well as providing them with bereavement support.

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Development of the Carers' Alert Thermometer (CAT) to identify family carers struggling with caring for someone dying at home: a mixed method consensus study

There is an increasing international policy direction to promote home death for dying patients which will impact on the demands placed on family carers. The early identification of carer needs and appropriate intervention can help avoid crisis situations for the carer and avoidable hospital admissions which are reported to be a global concern. The aim of the study was to explore what professionals and carers of patients with cancer and advanced progressive illness, in their last year of life, find burdensome and to develop an alert system for use by non-specialist staff. 

Methods: A mixed-method, multi-phased, consensus study sequentially utilising qualitative and quantitative data to develop and pilot the Carers’ Alert Thermometer (CAT). 245 people (117 carers and 128 professionals) participated in the study across a range of health and social care settings in the North West of England (2011–2014).

Results: A number of key domains were identified and prioritised by consensus for inclusion in the CAT. The 8 domains fit within two overarching themes of the reported carer experience; the support needed by the carer to provide care and the support needed for the carer’s own health and well-being. The resultant CAT is an evidence-based alert thermometer consisting of 10 questions, guidance on the possible actions for each alert and space for an action plan to be jointly agreed by the assessor and carer. Preliminary piloting of the CAT has shown it to be valued, fit for purpose and it can be administered by a range of personnel.

Conclusions:The CAT enables the identification of current and potential future needs so a proactive approach can be taken to supporting the carer as their role develops over time, with a view to enhancing their well-being and preventing avoidable hospital admissions; ultimately supporting patient choice to remain in their own home.

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Partners in care: who cares for the carers?

Little time may be taken to listen to what carers have to say or explain clinical and service policies. The odd 5 minutes at the end of a busy clinic is not enough; being paraded in front of the ward round is simply unacceptable, but it still happens. A 20-mile trip for family carers just as imprisoned by the patient’s mental illness, geographically and financially, may be impossible. Where is the continuity of care for carers, uncertain of roles within the myriad multidisciplinary teams whose hands the patient may pass through, with no key worker for themselves to turn to in crisis, and who have to tell their story to someone different every time they come to hospital?

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Delivering for health: delivering for mental health national standards for crisis services

Standards for crisis response and resolution services to reduce hospital admissions and repeat admissions are presented. The standards cover access and availability, planning and delivering support, promoting equality and respecting diversity, resolution and discharge, service user involvement, supporting and involving carers, training and workforce development, and working with communities.

Original report (pdf) on the Scottish Government website.

Growing older together: ageing and people with learning disabilities and their family carers

Purpose – This article aims to explore the new challenge posed by the first generations of people with learning disabilities who are now living into older age in significant numbers. Most are living with family carers, who are themselves ageing. This represents a major transition in people's lives and one to which services must respond if a normal life event is not to be turned into a crisis. Though this issue has been acknowledged by government, much more needs to be done to provide people with learning disabilities and their families with the necessary support to enjoy a healthy and active old age. 

Design/methodology/approach – This article draws on the work of the authors for over a decade in this field. 

Findings – Learning disabled people are likely to experience the age discrimination common in much older people provision and practice and the caring relationship is undermined in the short and long term. Evidence on the extension of personalisation indicates that it presents very considerable challenges for this group of families. 

Practical implications – More information is needed on this growing population. More preventative support is needed to sustain the caring relationship while the family is living together, to support families to plan for the future, and to provide support when the caring relationship breaks down. 

Originality/value – The article draws together data from the fields of ageing, learning disability and family care to highlight the increasing challenge, which this growing, but neglected, population presents both for policy and practice. It examines the implications for both the older people themselves and for the ageing family carers with whom the majority live and of current government policy in social care and welfare benefits for this very vulnerable group.

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The experience of partners of young stroke survivors

Purpose. Stroke is a health crisis that can prompt a re-organisation of lives and impact on family caregivers. This study extends existing findings by investigating the experiences of partners of young stroke survivors (under 60 years old) two to seven years post-stroke. Method. Semi-structured interviews with seven partners were analysed using interpretative phenomenological analysis. Results. Two super-ordinate themes emerged, 'Adjustment' and 'Coping'. The first consists of two subordinate themes; 'Changed lives' describes the way in which the impact of the stroke was played out in many areas of the partners lives, whereas 'Enduring effects on the self' highlights the psychological consequences of these changes. 'Coping' refers to the ways in which partners adapt to life post-stroke. Conclusions. The study extends knowledge by demonstrating the enduring effects of caring on domestic tasks, relationship with survivor, family roles, employment and social life. Trauma from the stroke event and its immediate aftermath persisted over years. Caring impacted on the partners' sense of self and identity, and positive as well as negative effects were noted. Coping was primarily problem-focussed and previous experiences, social comparison and social support were important. Implications for community support services are discussed.

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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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Dear Gordon Brown...

The author comments on the lack of government funds to pay informal carers and finance adult care properly in Great Britain. He mentions that the response of the government to the imminent crisis in adult social care funding has been to establish committees to examine the care eligibility criteria as opposed to the £55 billion of funds allocated to ensure the survival of Northern Rock. He notes the low salary received by informal carers despite the fact that they save the nation about £60 billion annually.

Dying at home: evaluation of a hospice rapid-response service

Various studies suggest that there is a preference among patients, professionals and the public for death to occur at home (Dunlop et al, 1989; Townsend et al, 1990; Hinton, 1994). Data indicates that some patients are denied the opportunity to exercise choice in the place of death. In areas where palliative rapid-response teams have been available more people have been able to die at home. This article presents the findings of an evaluation of a hospice rapid-response service in the Highlands of Scotland, which was designed to respond to the needs of people in crisis facing death. The study was designed to produce a rigorous and comprehensive description of a newly–operational service at the pilot stage. It reflects not only the views of the professionals involved but also focuses on the views of informal carers. Seventeen patients were referred to the rapid-response service in its first year of operation between April 1998 and March 1999. The service has shown some success in enabling patients to die at home and satisfaction with the service is high among professionals and lay carers.

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Understanding the impact of an Assertive Outreach Team on couples caring for adult children with psychosis

Carers play an essential role in the lives of people suffering from mental health problems. Caring is very often a relational activity carried out by family members. Assertive Outreach (AO) services ought to be particularly well placed to support carers, but their impact upon families is not well understood. We set out to understand the intervention of AO services from a family perspective, and in particular to explore its meaning from the perspectives of pairs of carers. Three pairs of carer-parents participated in six individual open-ended interviews. Transcripts were analysed from an interpretative phenomenological perspective. All three families described a series of distressing crisis experiences prior to their relationship with AO. Carers had felt painfully excluded from their parental roles – both by their children and by services. Two further themes illuminated their subsequent relationship with AO: first, carers felt reassured; valued and included; and benefited from improvements in family relationships. Second, there were still concerns about the continuing relationship with professionals, and about the future of their family member – especially in relation to how services might secure these things. It was striking that there were different needs and concerns not only between the three couples but within each pair. Changing roles and relationships within the family were related to what families wanted from services. We note that engagement with systemic ways of working may prove fruitful for the development of AO services.

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“We are different people”: A narrative analysis of carers’ experiences with mental health crisis and support from crisis resolution teams

Crisis resolution teams (CRTs) deliver acute mental health care in the community. This care implies collaboration with carers. The article explores experiences of mental health crisis from the carer’s perspective and what carers experience as helpful and/or unhelpful help from CRTs. In-depth interviews with carers are analyzed using a narrative approach. The configuration of data elements into coherent stories reveals that thematically similar experiences also have a highly personal imprint. Understanding a carer’s individual experiences and needs in a contextual, storied manner can reveal information that is crucial to the collaboration of help that is perceived as helpful within a home-based approach to a mental health crisis.

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Supported housing for people with Down's syndrome

There has been limited research on the attitudes of family carers and the part they play in helping people with a learning disability choose accommodation. A postal questionnaire was sent to family carers of people with Down's Syndrome, to identify their attitudes to supported living, their experience of the application process, and the support they provided to residents. It was found that main family carers of people with Down's Syndrome in supported living were generally satisfied with the housing and support provided, particularly with respect to activities of daily living. There was less satisfaction with the help received with managing finance and employment. There had been a mean of 2 years delay between application and securing accommodation. The large number of people providing care at home who wished their family-member to move into supported living suggests that there is a large unmet need for this type of accommodation. Almost all family carers continued to provide support after participants moved into supported living, particularly with more complex tasks such as financial management, and with responding to crises and ill-health. This indicates that people with a learning disability in supported living who do not have active contact with their family may be vulnerable financially and less likely than others to receive help at times of crisis. The proportion of residents in supported living who experience such problems will increase as family carers die or otherwise become too infirm to continue to provide support.

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School nurses to take greater responsibility for young carers

School nurses should be 'champions' for young carers and support them in times of crisis, according to new government guidance.

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