The impact of organisational culture on the delivery of person-centred care in services providing respite care and short breaks for people with dementia.

Ensuring the development and delivery of person-centred care in services providing respite care and short breaks for people with dementia and their carers has a number of challenges for health and social service providers. This article explores the role of organisational culture in barriers and facilitators to person-centred dementia care. As part of a mixed-methods study of respite care and short breaks for people with dementia and their carers, 49 telephone semi-structured interviews, two focus groups (N= 16) and five face-to-face in-depth interviews involving front-line staff and operational and strategic managers were completed in 2006-2007. Qualitative thematic analysis of transcripts identified five themes on aspects of organisational culture that are perceived to influence person-centred care: understandings of person-centred care, attitudes to service development, service priorities, valuing staff and solution-focused approaches. Views of person-centred care expressed by participants, although generally positive, highlight a range of understandings about person-centred care. Some organisations describe their service as being person-centred without the necessary cultural shift to make this a reality. Participants highlighted resource constraints and the knowledge, attitudes and personal qualities of staff as a barrier to implementing person-centred care. Leadership style, the way that managers' support and value staff and the management of risk were considered important influences. Person-centred dementia care is strongly advocated by professional opinion leaders and is prescribed in policy documents. This analysis suggests that person-centred dementia care is not strongly embedded in the organisational cultures of all local providers of respite-care and short-break services. Provider organisations should be encouraged further to develop a shared culture at all levels of the organisation to ensure person-centred dementia care.

The New Zealand informal caregivers and their unmet needs.

AIM: To identify the characteristics and demographics of the New Zealand caregiver and their unmet support needs. METHOD: During December 2007-August 2008, 300 caregivers were recruited to participate throughout New Zealand. Mixed methods data were collected by telephone, using two well validated scales: Centre for Epidemiology Studies Depression and Caregivers Reaction Assessment. Caregivers were also asked open-ended questions regarding their support and additional help needed. Analysis was by descriptive statistics and General Inductive approach RESULTS: Caregivers aged 30-39 had the highest depression, while a larger group shared the highest stress (ages 30-59). Caregivers commonly discussed adverse effects of caregiving on lifestyle, health and financial situations. Lack of information and assistance were concerns, and respite was inadequate. Overall, less than 1% of caregivers of people under the age of 65 and 4% of caregivers of older people were happy with the support received. Caregivers wanted more financial assistance, information, reliable support workers, flexible respite, and recognition for their caregiving role. CONCLUSION: If the government wishes to have more people with disabilities or chronic illness living at home, greater resources are needed to adequately support caregivers. At present this important sector of the population is undervalued and under provided for.

Caregiver assessment of support need, reaction to care, and assessment of depression.

The aims of this study were to: (a) identify New Zealand informal carers' support needs; (b) assess caregivers' depression; and (c) assess positive and negative aspects of caregiving. A sample of 287 carers from throughout New Zealand was recruited by advertisements in carer support organizations literature, in 2008. Data were collected using Centre for Epidemiologic Short Depression scale (CES-D10), Caregivers Reaction Assessment scale (CRA), and open-ended questions. Carer burden was significant (p ≤ .01) in the 60 to 69 age group. The relationship between CRA and CES-D10 in carers in the 50 to 59, 60 to 69 carer age groups; and 0 to 29, 60 to 69, 70 to 79, and 80 plus care recipient age groups were also significant. Mean burden was highest in the 50 to 59 age group (77/120) with depression mean highest in the 30 to 39 age group (14/30). Carers commonly discussed the adverse effects of caregiving on identity, lifestyle, health, and financial situation. Lack of information, poor respite care, and combining work with care were major frustrations. If the government wishes to successfully pursue initiatives allowing people to remain at home, more resources are needed to adequately support carers.

Supporting working carers: do policies in England and The Netherlands reflect 'doulia rights'?

Governments of advanced European welfare states with ageing populations are struggling to reconcile what seem to be conflicting policies. On the one hand, they are trying to increase the labour market participation of women and older workers. On the other hand, they are making more demands on people to care for disabled, chronically ill and frail older relatives and friends. Those caregivers are more likely to be women and older people. In this paper, we present the policies and experiences of carers from two countries that differ in type of welfare state, health and social care system and labour market context: England and The Netherlands. The aim was to compare English and Dutch policy measures for carers and examine their impact with evidence from two studies of people who combine work and care. The analysis is informed by the theoretical concepts of 'doulia' (whereby the state, employers and other sections of society reciprocate carers and other dependency workers for their unpaid caregiving) and 'doulia rights' (a carer's right to provide care without the risk of impoverishment). The evidence suggests that English and Dutch carers' policies have different strengths and weaknesses, but in neither country do they show strong commitment to the right to doulia.

The effectiveness and cost-effectiveness of respite for caregivers of frail older people.

The proportion of frail elderly people in the industrialized world is increasing. Respite care is a potentially important way of maintaining the quality of life for these people and their caregivers. The objective of this systematic review was to determine the effectiveness and cost-effectiveness of different models of community-based respite care for frail older people and their caregivers. To identify relevant studies, 37 databases were searched, and reference checking and citation searches were undertaken. Well-controlled effectiveness studies were eligible for inclusion, with uncontrolled studies admissible only in the absence of higher-quality evidence. Studies assessed the effect of community-based respite on caregivers of frail elderly people relative to usual care or to another support intervention. Eligible economic evaluations also addressed costs. Where appropriate, data were synthesized using standard meta-analytic techniques. Ten randomized, controlled trials, seven quasi-experimental studies and five uncontrolled studies were included in the review. For all types of respite, the effects upon caregivers were generally small, with better-controlled studies finding modest benefits only for certain subgroups, although many studies reported high levels of caregiver satisfaction. No reliable evidence was found that respite care delays entry to residential care or adversely affects frail older people. The economic evaluations all assessed day care, which tended to be associated with similar or higher costs than usual care. Given the increasing numbers of frail elderly people and the lack of up-to-date, good-quality evidence for all types of respite care, better-quality evidence is urgently needed to inform current policy and practice.

Choice in the context of informal care-giving.

Extending choice and control for social care service users is a central feature of current English policies. However, these have comparatively little to say about choice in relation to the informal carers of relatives, friends or older people who are disabled or sick. To explore the realities of choice as experienced by carers, the present paper reviews research published in English since 1985 about three situations in which carers are likely to face choices: receiving social services; the entry of an older person to long-term care; and combining paid work and care. Thirteen electronic databases were searched, covering both the health and social care fields. Databases included: ASSIA; IBSS; Social Care Online; ISI Web of Knowledge; Medline; HMIC; Sociological Abstracts; INGENTA; ZETOC; and the National Research Register. The search strategy combined terms that: (1) identified individuals with care-giving responsibilities; (2) identified people receiving help and support; and (3) described the process of interest (e.g. choice, decision-making and self-determination). The search identified comparatively few relevant studies, and so was supplemented by the findings from another recent review of empirical research on carers' choices about combining work and care. The research evidence suggests that carers' choices are shaped by two sets of factors: one relates to the nature of the care-giving relationship; and the second consists of wider organisational factors. A number of reasons may explain the invisibility of choice for carers in current policy proposals for increasing choice. In particular, it is suggested that underpinning conceptual models of the relationship between carers and formal service providers shape the extent to which carers can be offered choice and control on similar terms to service users. In particular, the exercise of choice by carers is likely to be highly problematic if it involves relinquishing some unpaid care-giving activities.

Scoping the field: services for carers of people with mental health problems.

Mental ill health is very common. Most people with mental health problems live in the community, and as many as 1.5 million people in the UK may be involved in caring for a relative or friend with a mental illness or some form of dementia. Recent legislation and policy initiatives such as the National Strategy for Carers, and the National Service Frameworks for Mental Health and Older People emphasise the importance of providing support for this particular group of carers. The present paper reports the findings of a scoping study to identify what the research tells us about the effectiveness and cost-effectiveness of interventions for the carers of people with mental health problems, and also where there are gaps in the knowledge base. Some 204 evaluation studies were included in the review, just 13 of which had an economic component. The majority of studies were conducted in the USA, and were aimed at carers of people with Alzheimer disease or other forms of dementia. Overall, there was a lack of strong evidence to support any specific interventions, although almost all studies were able to identify some positive outcomes of services provided. In contrast to the relatively narrow approach to effectiveness adopted in most of the studies reviewed, the contributors to a consultation exercise perceived this concept in a far more rounded and holistic way. For them, the process of service delivery was as important as the outcome. There was relatively little research evaluating interventions and services singled out in UK policy initiatives as potentially useful in supporting this group of carers, and further evaluation studies are needed.

People into Employment: supporting people with disabilities and carers into work.

Carers and people with disabilities are two disadvantaged groups at risk of social exclusion. Work is an important route to social inclusion, but carers and people with disabilities are under-represented in the work force. The present paper reports key findings from a new study that evaluated People into Employment (PIE), a pilot employment project in the north-east of England designed to support people with disabilities, carers and former carers in gaining mainstream work. The study aimed to identify what clients, partner agencies and employers perceived to be PIE's most important services, its strengths and areas where there was scope for further development. The study collected quantitative and qualitative data at the mid-point and at the end of the project through two questionnaire surveys, and interviews with PIE clients, the project development officer, partner agencies and employers. Drawing on the 'pathway model', the findings show that PIE's interventions included mobilising, matching, mediating and supporting activities. Key ingredients in PIE's success include: tailor-made job-search activities and training; adjusting the pace at which people move towards sustained employment; recognising and responding to the differing needs of people with disabilities, carers and former carers; confidence boosting; accompanying clients to job interviews; good job matching; and ongoing practical and emotional support for both clients and employers. Rudimentary calculations suggest that the cost per job to the project is less than the cost per job for large national projects. Overall, these findings illustrate how access to employment via flexible job-search services geared up to the local labour market can successfully promote social inclusion for carers and people with disabilities.

Combining informal care and work: supporting carers in the workplace.

The UK Government is concerned that women and men who care for disabled or sick relatives, or elderly people, and who also wish to take part in paid work should have increased opportunities to do so. However, many informal carers find combining work and care difficult; some may 'choose' to give up paid employment completely. The present paper draws on the findings from two projects to explore the extent to which the needs of employees with caring responsibilities are supported in the workplace. The two projects examined evidence from a study of informal carers assessed under the 1995 Carers Act, identified the difficulties which they face in their workplace and observed the strategies which they developed to help sustain the two roles. From this, a model of support for working carers was developed which includes leave policies, carer-friendly working arrangements, access to a (private) telephone, and supportive line managers and co-workers. This support model was tested on the employment policies of 13 employers to see how 'carer-friendly' they were. Most of the organisations studied were able to provide appropriate support for carers identified in the model. Questions were then raised about different aspects of carer-friendly working arrangements, including whether carers should receive any special treatment that is not available to their colleagues, the role of line managers, and the relationship between seniority and opportunities to combine work and care.

Carers' experiences of hospital discharge and continuing care in the community.

This paper presents the findings of a study of carers' perspectives on discharge procedures and continuing care arrangements for adults aged 18-65 with physical and complex disabilities. Interviews were conducted with carers of people discharged from younger disabled units (YDUs) and hospital settings. The emphasis carers place on the need to be informed and involved in the discharge planning process is described, and the adequacy of continuing care arrangements from carers' perspectives is examined. The findings of the study raise issues for policy and practice about carers' needs, vis-à-vis patients, to be included as active participants in the discharge planning process.