Decision aids for respite service choices by carers of people with dementia: development and pilot RCT.

BACKGROUND: Decision aids are often used to assist individuals confronted with a diagnosis of a serious illness to make decisions about treatment options. However, they are rarely utilised to help those with chronic or age related conditions to make decisions about care services. Decision aids should also be useful for carers of people with decreased decisional capacity. These carers' choices must balance health outcomes for themselves and for salient others with relational and value-based concerns, while relying on information from health professionals. This paper reports on a study that both developed and pilot tested a decision aid aimed at assisting carers to make evaluative judgements of community services, particularly respite care. METHODS: A mixed method sequential study, involving qualitative development and a pilot randomised controlled trial, was conducted in Tasmania, Australia. We undertook 13 semi-structured interviews and three focus groups to inform the development of the decision aid. For the randomised control trial we randomly assigned 31 carers of people with dementia to either receive the service decision aid at the start or end of the study. The primary outcome was measured by comparing the difference in carer burden between the two groups three months after the intervention group received the decision aid. Pilot data was collected from carers using interviewer-administered questionnaires at the commencement of the project, two weeks and 12 weeks later. RESULTS: The qualitative data strongly suggest that the intervention provides carers with needed decision support. Most carers felt that the decision aid was useful. The trial data demonstrated that, using the mean change between baseline and three month follow-up, the intervention group had less increase in burden, a decrease in decisional conflict and increased knowledge compared to control group participants. CONCLUSIONS: While these results must be interpreted with caution due to the small sample size, all intervention results trend in a direction that is beneficial for carers and their decisional ability. Mixed method data suggest the decision aid provides decisional support that carers do not otherwise receive. Decision aids may prove useful in a community health services context. TRIAL REGISTRATION NUMBER: ISRCTN: ISRCTN32163031.

Access to respite breaks for families who have a relative with intellectual disabilities: a national survey.

AIMS: This paper reports the findings of a national study of the variations in the provision and correlates of respite breaks to families. Background. Internationally, respite breaks are a major support service to family carers, demand for which often exceeds supply for persons with an intellectual disability. Hence, the length of breaks available to families has to be rationed. Nurses are often involved in such decisions. METHOD: National data on the use of respite breaks by over 4000 families in a full calendar year (2008) were analysed to examine the variation within the Republic of Ireland on two indicators: namely the proportion of carers who had any access to breaks and the median number of days they had received. FINDINGS: Striking differences across health service areas were found on both indicators of usage. These were not solely attributable to the availability of provision but also reflected variations in the criteria local services used to allocate places. However, those persons with more severe disabilities were given priority, whereas carer characteristics were not a major influence. Contact with social workers and community nurses also increased the likelihood of carers receiving respite breaks. CONCLUSION: Intra-country comparisons of service delivery should assist planners in creating more equitable access to respite breaks and the development of more explicit eligibility criteria for their use. Nurses are well placed to lead on this.

[Turkish emigrants in Germany. Deficits in home care knowledge and health services - a review]. / Türkische Migranten in Deutschland. Wissens- und Versorgungsdefizite im Bereich häuslicher Pflege - ein Überblick.

Family members caring for relatives at home are often under great stress. Numerous studies have shown that taking care of a chronically ill family member may have negative effects on physical and emotional health. Frequent symptoms observed in family caregivers are insomnia, joint pain, physical exhaustion, and depression. There are, as yet, no definitive empirical studies in Germany on the subjective burden of family caregivers in Turkish families and on their specific needs for help, although their numbers are increasing exponentially. The statement based on the low rate of use of professional care by Turkish families in Germany that there is great willingness among Turkish families to take care of family members at home - a self-evident part of the concept of family - should not lead to the assumption that care causes less stress in this population. There is a great need for research into the way in which the care situation and the changes attendant thereon are experienced by Turkish family caregivers. Recording of subjective burden and individual needs is important to develop accepted strategies to relief Turkish family caregivers.

'Jumping through hoops': parents' experiences with seeking respite care for children with special needs.

BACKGROUND: Respite care may act as a means to reduce stress and fatigue in people caring for a dependent who has a disability. Despite this, a variety of barriers may exist to obtaining such services. This study explored caregivers' experiences seeking respite care for their children with special needs within a province in Canada. METHODS: Caregivers were recruited from two agencies providing respite care for children with fetal alcohol spectrum disorders and other mental health and developmental difficulties. In total, 10 caregivers participated in in-depth individual interviews. A constructivist grounded theory approach was employed in the design and analysis of the data. RESULTS: Caregivers discussed their frustrations with the process of finding and obtaining respite care, a course of action described as 'jumping through hoops'. This construct was composed of subcategories emphasizing the complexity of 'navigating the system', the bidirectional process of 'meeting the requirements' and the challenges of 'getting help'. CONCLUSIONS: The collective experiences of these caregivers point to the need for more flexibility and co-ordination of respite care services for children with special needs.

Factors influencing the use and provision of respite care services for older families of people with a severe mental illness.

Family carers of people with a severe mental illness play a vital, yet often unrecognized and undervalued role in Australian society. Respite care services can assist these family carers in their role; however, little is known about their access to these services. The paper addresses this knowledge gap. An exploratory field study was conducted throughout the eastern suburbs of Sydney, Australia, to identify and examine the factors influencing the use and provision of respite services for older carers of people with a mental illness. Semistructured, in-depth interviews, and structured self-completed questionnaires were conducted with older family carers, mental health care professionals, and respite care service providers. Additionally, relevant documents (local policies, strategic plans and reports on respite care) were reviewed. It was found that current respite services are problematic for older family carers of Australians with a mental illness, signalling the need for concerted efforts by carers, health professionals, and service providers to improve access. Changes to respite provision and utilization are recommended.

'It's very difficult to get respite out here at the moment': Australian findings on end-of-life care for Indigenous people.

Whilst access to respite care has been found to represent an important source of support for terminally ill patients and their families, the availability of these services to Indigenous Australians has to date remained undocumented. This potential need for respite in Indigenous communities was explored as part of a National Health and Medical Research Council (NH&MRC) funded study designed to develop an innovative model for Indigenous palliative care. The data needed for model development were collected through a series of open-ended, qualitative interviews conducted with a cross-section of consumers and health professionals within the Northern Territory, Australia. The findings reflected a serious need for Indigenous respite services, coupled with a severe deficiency in the present availability of these services, especially within rural and regional areas. This lack of local respite services was documented to be negatively impacting upon the ability of carers to fulfil their caring duties and was found placing undue physical, emotional and economic stress upon carers, patients and their families. Furthermore, the lack of access to local respite services documented was found to be forcing rural and regional patients to relocate to metropolitan areas away from the family, community and land to which strong ties are held. The lack of Indigenous respite services was also found to obstruct patients' and carers' wishes for death to occur in the local community, rather than in far away cities. Significant obstacles were found to be hindering the provision of respite care to Indigenous Australians, namely beliefs about families looking after their own, resource restrictions, limited staff availability in local areas, as well as problems associated with hostel use in metropolitan areas. The conclusions drawn from this study suggest the importance of tackling the obstacles preventing local respite services being established in areas close to where patients and carers live.

Assessing the applicability of GIS in a health and social care setting: planning services for informal carers in East Sussex, England.

Informal carers save the state's health and social care services billions of pounds each year. The stresses associated with caring have given rise to a number of short-term care services to provide respite to carers. The Carers (Recognition & Services) Act of 1995 identified formally for the first time, the important role that unpaid carers provide across the community in Britain. The planning of combined health and social care services such as short-term care is a less developed application of geographical information systems (GIS) and this paper examines awareness and application issues associated with the potential use of GIS to manage short-term care service planning for informal carers in East Sussex. The assessment of GIS awareness was carried out by using a semi-structured questionnaire approach and interviewing key local managers and planners across a number of agencies. GIS data was gathered from the agencies and developed within a GIS to build up a set of spatial databases of available services, location of users and additional geo-demographic and topographic information. The output from this system development was presented in turn at workshops with agencies associated with short-term care planning as well as users to help assess their perspectives on the potential use and value of GIS. A renewed emphasis on a planned approach to health care coupled with integrated/ joint working with social care creates a need for new approaches to planning. The feedback from planners and users, suggested that a number of key data elements attached to data-sharing may prove to be simultaneously progressive yet problematic, especially in the areas of ethics, confidentiality and informed consent. A critical response to the suitability of GIS as a tool to aid joint health and social care approaches is incorporated within a final summary.

Respite--a coping strategy for family caregivers.

The caregiver respite experience is seen as one way to moderate the negative consequences of caregiving. From an interpretivist research orientation, this study explored how 10 family caregivers of persons with dementia experienced respite. From a coping theoretical perspective, the caregiver respite experience is discussed as a process of "getting out" of the caregiver world, and is linked to avoidance strategies of emotion-focused coping. The following three phases within the coping dimension of the respite experience were found: caregivers recognizing their need to get out of the caregiver world, giving themselves permission to actually get out from it temporarily, and having the appropriate social support resources available to facilitate the getting out. The critical practice and research implications linked to caregivers' ability to acknowledge their need for respite are described.

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.

Residential care workers and residents: the New Zealand story.

AIMS: To describe the nature and size of long-term residential care homes in New Zealand; funding of facilities; and the ethnic and gender composition of residents and residential care workers nationwide. METHODS: A postal, fax, and email survey of all long-term residential care homes in New Zealand. RESULTS: Completed surveys were received from an eligible 845 facilities (response rate: 55%). The majority of these (54%) facilities housed less than 30 residents. Of the 438 (94%) facilities completing the questions about residents' ethnicity, 432 (99%) housed residents from New Zealand European (Pakeha) descent, 156 (33%) housed at least 1 Maori resident, 71 (15%) at least 1 Pacific (Islands) resident, and 61 (13%) housed at least 1 Asian resident. Facilities employed a range of ethnically diverse staff, with 66% reporting Maori staff. Less than half of all facilities employed Pacific staff (43%) and Asian staff (33%). Registered nursing staff were mainly between 46 and 60 years (47%), and healthcare assistant staff were mostly between 25 and 45 years old (52%). Wide regional variation in the ethnic make up of staff was reported. About half of all staff were reported to have moved within the previous 2 years. CONCLUSIONS: The age and turnover of the residential care workforce suggests the industry continues to be under threat from staffing shortages. While few ethnic minority residents live in long-term care facilities, staff come from diverse backgrounds, especially in certain regions.

Factors affecting timely recognition and diagnosis of dementia across Europe: from awareness to stigma.

BACKGROUND: Timely recognition and diagnosis of dementia is the pre-condition for improving dementia care, but diagnosis often occurs late in the disease process. OBJECTIVE: To compare facilitators and obstacles to the timely recognition of dementia across eight European Union states, in order to implement established policies for earlier diagnosis. METHODS: A modified focus group technique, including a pre and posterior procedure. RESULTS: Twenty-three participants from different disciplines, purposively sampled for professional expertise in dementia research and innovative practice, attended two focus groups. Stigma in ageing and dementia, accompanied by a sense that there is little to offer until later on in the disease, underpinned the widespread reluctance of GPs to recognise dementia at an early stage and were major obstacles to the timely diagnosis of dementia across all eight countries. Dementia care services varied widely across Europe. Countries with the greatest development of dementia health care services were characterised by national guidelines, GPs fulfilling a gatekeeper function, multi-disciplinary memory clinics and innovative programmes that stimulated practice and new services. Dementia-related stigma was perceived as being less prominent in these countries. CONCLUSIONS: Overcome of delays in the timely diagnosis of dementia needs more than specialist services. They should address the processes associated with stigma, age and dementia, especially where these relate to physician practice and diagnostic disclosure. Stigma is perceived as variable across European States, with a promising finding that its impact is relatively small in countries with the widest range of dementia care services.

Respite care in the long-term care continuum.

Respite care preserves the physical and mental strength of the care giver while delaying institutionalization. However, anticipated growth of the elderly population will dramatically increase the demand for these services.

A survey of the perspectives of specialist palliative care providers in the UK of inpatient respite.

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7-14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands.

Respite in palliative care: a review and discussion of the literature.

Family caregivers, who are patients' relatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory. What evidence there is suggests that while some aspects of caring are looked on positively, carers also experience challenges in maintaining their physical and psychological health and their social and financial wellbeing. One common recommendation is that respite facilities be provided. The purpose of this paper is to consider the definitions and assumptions that underpin the term 'respite' and its impact on the physical, psychological and social outcomes of carers in palliative care contexts. We conducted a review of the literature, which involved searching five electronic databases: Web of Science, Medline, CINHAHL, Cochrane Database System Review and Social Sciences Citation Index. The search identified 260 papers, of which 28 related directly to adult respite care in specialist palliative care. These papers were largely concerned with descriptive accounts of respite programmes, guidance on referral criteria to respite services or were evaluating the effects of respite on the patient rather than the impact on the carer. We did not identify any empirical studies assessing the effects of respite provided by specialist palliative care services on carer outcomes. There is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease. We, therefore, draw on the wider literature on carers of adults with chronic disease to consider the impact of respite services and offer suggestions for further research.

Associations between HIV-positive individuals' receipt of ancillary services and medical care receipt and retention.

This study examines associations between HIV-positive individuals' receipt of ancillary services and their receipt of and retention in primary medical care. Ancillary care services examined include case management, mental health and substance abuse treatment/counseling, advocacy, respite and buddy/companion services, as well as food, housing, emergency financial assistance, and transportation. The selection criterion used was the receipt of care from January-June 1997 at selected facilities receiving funding under the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, a federally funded safety net programme in the USA. The receipt of each ancillary service was associated with the receipt of any primary medical care from a safety net provider. All ancillary services were more strongly associated with primary care receipt than with retention in care or the mean number of primary care visits per year. Mental health and substance abuse treatment/counselling, client advocacy, respite care and buddy/companion services all had significant associations with all primary medical care measures. This is the first time in one study that the primary medical and ancillary services received by all clients at safety net-funded providers from multiple cities and states have been examined. All types of safety net providers, from the largest medical centre to the smallest community-based organization, are represented in this study. The patterns seen here are similar to the findings from the other, geographically more restricted, studies reported on in this volume.