Carers and community mental health services

Background There is a growing appreciation of the role and needs of carers for people with mental health problems. Carers are a diverse group, including partners, relatives and friends who are seen as such by service users. Methods Sixty-four carers of people with severe mental health problems served by four different mental health care providers were interviewed using the Experiences of Care-giving Inventory. The districts were selected to differentiate services that are targeted at more severely impaired users from those that include a wider spectrum, and to contrast services that have greater integration between health and social care providers with those whose health and social care agencies operate relatively discretely. Results In the two districts where service users had more severe mental health problems, carers worried more about negative symptoms and thought less about good aspects of the caring relationship. In the two districts where health and social services worked more closely together, carers worried significantly less about the need to back up services. Conclusions These findings suggest that service organisation can affect carers, in particular that integration between health and social care for people with mental health problems may benefit carers in ways that were hitherto unproven. They highlight the needs of carers for younger people. They show that the ECI is a useful instrument in measuring the impact of caring for people with severe mental health problems. Accepted: 19 September 2001     

Experiences of pathways to mental health services for young people and their carers: a qualitative meta-synthesis review

Worldwide, growing concern with young people’s mental health is spurring service reform efforts. Such reform requires a full understanding of the experiences of young people and their carers when seeking mental health help. To generate such an understanding, we conducted a meta-synthesis of qualitative literature on the perspectives of youths and their carers on navigating mental health systems. Five electronic databases were searched (Medline, PsycINFO, EMBASE, CINAHL, HealthSTAR). Studies were included if they explored the experiences of pathways to mental health services of persons aged 11–30 years and/or their carers; were published in English or French; and used qualitative methodology. Quality appraisal was conducted using the CASP tool. The synthesis of 31 included studies yielded three themes—initiating contact with mental health services; characteristics of services’ response; and youths’ and carers’ appraisal of services. Themes about initiating contact included mental health literacy, structural barriers, and social support. Service response-related themes included complex pathways, waitlists, eligibility, and fragmented care. In terms of service appraisal, positive encounters featured providers who were accessible and perceived as caring. Negative appraisals resulted from feeling misunderstood and excluded and being ill-informed about treatment. Across diagnoses and settings, youths and carers had difficult experiences accessing mental healthcare. While individual, social, and healthcare factors shaping pathways to care varied, systemic complexities were a common inhibitor. This synthesis informs recommendations for improving mental health services and youths’ pathways to them. It underlines the need for grounding reform in youths’ and carers’ perspectives and needs.

     

Carers' experiences of accessing and navigating mental health care for older people in a rural area in Australia

Objectives: Mental health care for older people is primarily delivered in the community and is largely dependent on informal carers. Mental health policy encourages partnerships between carers and service providers to facilitate service access, coordination and positive experience of care. However, carers often lack information and support from services, with the potential for carer burden, and negative impacts on their own health and capacity to fulfil caring tasks. This paper explores rural carers' experiences of accessing care from a range of services for older people with mental health problems.

Method: The Pathways Interview Schedule was used to facilitate 9 in-depth care journey interviews with 11 carers of older people with a mental health problem. Interviews explored their journeys to and through mental health, aged care, primary care and social care services. Framework analysis was used to explore carers' experiences and perceptions of care with a focus on access enablers and barriers.

Results: Carers had a significant role in navigating services and operationalising care for their relative. Enablers to accessing care included carer knowledge and workers actively involving carers in planning. Barriers included carer mental health literacy, consumer and carer readiness for services, and worker misinterpretation of confidentiality and privacy laws.

Conclusion: Carers should be considered key partners in mental health care planning that crosses service sectors. For this to occur, changes are required at the worker level, including increased communication between mental health workers and carers, and the service level, involving training for staff in interpreting confidentiality and privacy policy.     

The needs of older people with mental health problems according to the user,the carer,and the staff

BACKGROUND: Individual assessment of needs has been recognised as the most appropriate way to allocate health and social care resources. These assessments, however, are often made by the staff or by a carer who acts as an advocate for the user themselves. Little is known about how these proxy measures compare to how individual patients perceive their own needs. AIM: The aim of this study was to measure and compare ratings of need for older people with mental health problems by the older person themselves, their carer, and an appropriate staff member. METHOD: One-hundred and one older people were identified from various mental health services and 87 users, 57 carers, and 95 staff were interviewed using the Camberwell Assessment of Need for the Elderly (CANE) to identify met and unmet needs. RESULTS: Users identified significantly fewer of their needs (5.5) than either staff (8.1) or carers (8.3) did, but this difference was accounted for by people with dementia reporting less needs. Users identified fewer psychological or social needs (e.g. daytime activities, company, or carer distress) than staff or carers did. The average Kappa indicating level of agreement between staff and user was 0.52, between user and carer was 0.53, and between carer and user was 0.58. This showed only a fair level of reliability between different ratings of need. CONCLUSIONS: User perspectives should be given a high priority when assessing individual needs. Fears that assessment of need would be unduly time-consuming or would simply reflect individual demands should be allayed. A user-based assessment will assist healthcare providers to prioritise needs according to what the user themselves consider to be most important, beneficial, and acceptable to them. Reliance solely on assessment by staff or carers may not lead to the most equitable or appropriate use of services.     

Causes of crises and appropriate interventions: The views of people with dementia,carers and healthcare professionals

The aims of this study were to identify which factors may lead to crisis for people with dementia and their carers and identify interventions these individuals believe could help in crisis. Qualitative study using focus groups to compare the perspectives of people with dementia, family carers and healthcare professionals on causes of crises and crisis interventions. To help in a crisis, people with dementia were favourable towards support from family and friends, access to mobile phones and home adaptations to reduce risks. Carers were keen on assistive technology and home adaptation. Both carers and staff valued carer training and education, care plans and well-coordinated care. Staff were the only group emphasizing more intensive interventions such as emergency home respite and extended hours services. In terms of causes of crises, people with dementia focused on risks and hazards in their home, whereas family carers emphasized carer stress and their own mental health problems. Staff, in contrast were concerned about problems with service organization and coordination leading to crises. Physical problems were less commonly identified as causes of crises but when they did occur they had a major impact. Practical interventions such as home adaptations, assistive technology, education and training for family carers, and flexible home care services were highly valued by service users and their families during times of crisis and may help prevent hospital admissions. Specialist home care was highly valued by all groups.     

Homelessness and mental illness: a literature review and a qualitative study of perceptions of the adequacy of care

BACKGROUND: Homelessness and mental illness together confer significant morbidity and mortality because of physical health problems. Healthcare provision is undergoing significant review, and, as part of the Department of Health's policy reforms, the service user's view is central to the future restructuring of NHS services. MATERIAL: A literature review of homeless service users' perceptions of services for homeless mentally ill people was supplemented by a qualitative in-depth survey of 10 homeless people. This article reports on their views about the services they receive. Mismatch between expectations and provision, disputes with healthcare providers, dissatisfaction with the degree to which they have choice in their care, and suspicions about the intentions of health professionals demonstrate the extent to which powerlessness and social exclusion are replicated in healthcare economies. The inadequacy of hostels and their staff are also emphasised, with some recommendations for services. DISCUSSION AND CONCLUSIONS: There are few data on homeless people's perceptions of services for mental health problems. Homeless people have strong views about the adequacy of services to meet their needs. They were particularly concerned about stigma, prejudice and the inadequacy and complexity of services that they have to use. This article reports their recommendations for change.     

CARERS' KNOWLEDGE OF DEMENTIA AND THEIR EXPRESSED CONCERNS

Objective. The authors wished to determine how much carers from different settings caring for patients with dementia knew about the disorder and elicit their main concerns about the disease. Design. A survey questionnaire was administered to 136 carers. Setting. Two old age psychiatric services and an Alzheimer's support group in urban areas of the UK. Participants. The carers came from one of three categories: (1) carers with no prior contact with elderly mental health services (preassessment group); (2) carers who had been in contact with mental health care professionals (postassessment group); (3) carers in contact with an Alzheimer's Disease Society support group. Measures. A questionnaire on the subject of dementia. Carers' worries about the disorder were also recorded. Results. Carers in contact with an Alzheimer's support group were the most knowledgeable and carers in the preassessment group were the least knowledgeable on the subject of dementia. While carers in the postassessment group had a level of knowledge above that of the preassessment group, this difference failed to reach statistical significance. Conclusion. The study highlights the need for elderly mental health teams to evaluate their methods of dissemination of knowledge to carers, develop educational packages for carers and evaluate their effectiveness. © 1997 by John Wiley & Sons, Ltd.     

Abuse of carers by relatives with severe mental illness

BACKGROUND: Relatives often experience considerable problems looking after a family member with severe mental illness. The problems arising from verbal and physical abuse are not well researched or acknowledged. AIMS: To examine the frequency with which family carers experienced verbal and physical abuse from relatives who were being looked after by a community mental health service and to identify the correlates and consequences of that abuse. METHOD: Interviews with all the clients of a community mental health service in suburban Melbourne who had regular contact with a family carer together with interviews with the carers. RESULTS: One hundred and one clients and their family carers were interviewed. Supporting a previous study of patients on an acute admission ward, the experiences of verbal and physical abuse were positively correlated. Higher rates of abuse were associated with poor relationships between patients and their families and a history of poly-drug misuse and previous criminal offences on the part of the patient. Relatives experiencing higher levels of abuse were more likely to have. symptoms of emotional distress and were rated as experiencing more burden. CONCLUSIONS: Verbal and physical abuse are not infrequent problems facing family members caring for a relative with severe mental illness. Some of the risk factors for such abuse can be identified. Care plans for family carers could usefully target risk reduction strategies to minimise the occurrence of abuse.     

Caring for People with a Mental Disability at Home: Australian Carers’ Perceptions of Service Provision

This study investigates carer perceptions of the adequacy of assistance received by comparing two populations: those with a mental disability and those with a physical disability in Australia by using data representing 12.5% of the total population. This very large sample provides robust evidence for the study's findings. Of those caring for individuals with severe core disabilities, 21.6% of those with a mental disability compared to only 8.3% of carers of those with a physical disability reported inadequate service assistance. Greater involvement of consumers and their families in health care service planning will provide opportunities to deliver more appropriate services and enhance equities within this sector.     

The impact of location on satisfaction with dementia services amongst people with dementia and their informal carers: a comparative evaluation of a community-based and a clinic-based memory service

BACKGROUND: The development of effective medication for the treatment of Alzheimer's disease led to an expansion in the use of memory clinics ther clinic-based services for the delivery and monitoring of the drugs. In contrast, there is an increased emphasis on providing home and community based service delivery for a range of illnesses including dementia. METHODS: This paper reports the findings of an evaluation study comparing a clinic-based and a community service. A convenience sample of 10 service users and carer dyads took part in in-depth qualitative interviews. Service users were diagnosed with mild to moderate dementia of Alzheimer's type. Interviews were recorded, transcribed and subsequently analyzed using template analysis. RESULTS: Service users and carers were satisfied with both services, with determinants of satisfaction differing between the two services. Issues relating to the location and spatial design of services, comfort, familiarity, communication with staff, and ease of use are highlighted as important determinants of satisfaction amongst service users and their carers. CONCLUSION: This study has implications for person-centred care practices in service delivery and for the future design of mental health services for people with dementia.     

How do HMOs reduce outpatient mental health care costs?

OBJECTIVE: Because previous studies of differences in utilization of mental health care services have had important limitations, it is not clear if their findings that health maintenance organization (HMO) outpatient mental health care costs less than fee-for-service care are due to less access, less intensive care per user, or selective enrollment of healthier people by HMOs. Therefore, the authors used data from the National Institute of Mental Health Epidemiologic Catchment Area (ECA) study to examine differences in the prevalence of psychiatric disorder and differences in the use of outpatient mental health services for adults enrolled in HMO or fee-for-service health insurance plans. METHOD: The subjects were an ECA community sample obtained from East Los Angeles and West Los Angeles. This sample included a large number of Hispanic subjects. The subjects were categorized according to their responses to a 5-item battery on insurance as Medicare enrolles, members of private fee-for-service plans, Medicaid enrollees, members of an HMO, and uninsured. The presence or absence of psychiatric disorders was determined by using the NIMH Diagnostic Interview Schedule. Both users and nonusers of mental health services were studied. RESULTS: The HMO and fee-for-service plans had similar prevalence of psychiatric disorder and similar access to specialty mental health care. However, HMO enrollees had significantly fewer visits per user to providers of specialty care. CONCLUSIONS: The most likely explanation for lower mental health care costs in HMOs is a less intensive style of care for a comparably sick population.     

Quantifying the size of the informal care sector for Australian adults with mental illness: caring hours and replacement cost

Purpose

To quantify and value the total informal support provided by family and friends to Australian adults with mental illness in 2018.

Methods

The number of mental health carers was drawn from the 2015 Survey of Disability, Ageing and Carers (SDAC), adjusted to the 2018 population. Annual caring hours by type of assistance were estimated using the SDAC, 2007 National Survey of Mental Health and Wellbeing and an online carer survey. Caring hours for each task were assigned an hourly replacement cost from the National Disability Insurance Scheme. Informal caring was valued as the sum of these costs minus expenditure on carer income support payments, estimating how much it would hypothetically cost governments to replace this care with formal support services.

Results

An estimated 354,000 (95% uncertainty interval (UI): 327,000–383,000) Australian mental health carers provided 186 million (95% UI: 159–215) hours of support in 2018. The estimated replacement cost was AU$8.4 billion (95% UI: 7.0–10.0), excluding AU$1.3 billion in income support. Univariate sensitivity analyses demonstrated that results were robust to variation in model inputs, with total caring hours the most influential parameter. Using an alternative estimate of mean caring hours, the replacement cost could be as high as AU$13.2 billion (95% UI: 11.2–15.4).

Conclusion

Informal carers provide substantial support to people with mental illness, highlighting their important contribution to the mental health system and reinforcing the need for carer support services. Future valuation studies would benefit from refinement of available data collections, particularly on hours and types of care provided.

     

What patients and carers want to know: an exploration of information and resource needs in adult mental health services

OBJECTIVE: The objectives of this study were to: (i) obtain baseline data on the extent of carer involvement across a representative sample of hospital and community patients within an integrated area health service; and (ii) examine perspectives on discharge planning and community care among patients and their carers to identify information and resources they consider important. METHOD: Over a 4-month period, inpatients before discharge and patients accessing community mental health services participated in face-to-face interviews. Information was collected about carer involvement and, with the patient's consent, the identified carer was sent a similar survey to determine demographics and information needs. This resulted in a representative sample of patients and carers accessing inpatient and community settings across a metropolitan mental health service. Support needs and carer burden were also assessed but are not reported here. RESULTS: A total of 407 interviews were completed, 207 in inpatient settings and 200 in the community. An inpatient response rate of 70% and a community response rate of 75% was achieved. Across both settings, 67% of patients identified a carer and a carer response rate of 28% was then obtained. We found carers and patients have different priorities regarding the information they want and information is often not provided to carers. Furthermore, patients were more confident in their ability to manage their mental health in the community than carers. CONCLUSIONS: This study yielded important baseline data about the number of patients who have a carer. We were also able to determine that routine clinical information provided to patients and carers is inadequate from their perspective. It is anticipated that this initiative will assist ongoing service planning and improve partnerships with patients and their carers.     

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

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

The effect of financial risk arrangements on service access and satisfaction among medicaid beneficiaries

OBJECTIVE: The relationship between financial risk arrangements, access to services, and consumer satisfaction with services was assessed in a sample of Medicaid beneficiaries who were enrolled under three different financial risk arrangements for health care and mental health care. METHODS: A survey was mailed to a stratified random sample of 9,449 recipients of Supplemental Security Income. Respondents reported their health and mental health service needs, service use, and satisfaction with services. Access was measured in terms of service needs that were met. RESULTS: Access to services was related to the type of risk arrangement. Respondents who were enrolled in plans that assumed the risk for the cost of services had poorer access to services than respondents who were enrolled in plans that did not assume the risk for the cost of these services. Satisfaction with medical services was negatively related to the plan's assuming the risk for medical expenditures. CONCLUSIONS: Financial risk arrangements may have important implications for service use patterns among persons who have disabilities. Health and mental health policy makers should carefully consider risk arrangements when designing health plans for vulnerable populations.     

A multi-method evaluation of an independent dementia care service and its approach

Changes to approaches in dementia care and subsequent services over the last decade have meant that quality of care for people with dementia and their carers has undoubtedly improved. However, few in-depth dementia service evaluation studies are documented. Those that are tend to focus on traditional evaluation measures such as length of stay or functional improvement, or they concentrate on the perspectives of carers. This study used multiple methods within Fourth Generation Methodology to evaluate (SPECAL) Specialized Early Care of Alzheimer's, a dementia care service and approach. The findings demonstrated that, within its approach, there was high quality of care offered by SPECAL to people with dementia and their carers. The evaluation also highlighted some of the difficulties facing SPECAL in its relationships with existing professional providers of mental health care for older people that have implications for other service providers. Recommendations from the evaluation were adopted as an agenda for future developmental work. This study has provoked broader questions for multi-disciplinary and multi-agency teams about quality of services for older people with dementia, and about relationships between the voluntary and statutory sectors.     

Alzheimer's disease in real life--the dementia carer's survey

BACKGROUND: Informal care from relatives provides the foundation of care for people with Alzheimer's disease (AD). It is important to understand the conditions under which carers perform their, often neglected, task. The dementia carer's survey aimed to identify carers' needs, differences between countries with regard to dementia care and the level of satisfaction of carers with utilised services. METHODS: The survey was conducted through Alzheimer Europe's member organisations in France, Germany, Poland, Spain and UK (Scotland). The survey was in the form of a questionnaire, and topics addressed included: demographics of carers and people with AD; time spent caring; disclosure of diagnosis; symptoms prompting diagnosis; diagnostic process; current and most distressing symptoms; carers' information requirements; evaluation of services. RESULTS: Each country had approximately 200 responders. Time spent caring increases with disease severity, and 50% of carers of people with late-stage dementia spent more than 10 h/day caring. Activities of daily living and behaviour were cited as the most problematic symptoms, reported by 68% and 50% of carers, respectively. Provision of information on all aspects of AD was felt to be inadequate, with key services such as home support not available to the majority of carers. Only 17% of carers considered the level of care for the elderly in their country as good. CONCLUSIONS: Further development of services and information provision are required to help carers in their everyday caring, including coping with problematic symptoms influencing areas such as activities of daily living and behaviour.     

Community provision for people with mental handicaps

This article discusses the findings and implications of a comprehensive survey of carers of people with mental handicaps recently undertaken in Dudley. The survey looked at the use and perceived need for services, and the question of the future care, accommodation, and support of this client group. The article draws attention to several key issues which emerged for providers of services in the community. Firstly, it notes that carers form a highly concerned and vocal group, eager to participate in the planning of service provision. Secondly, it points to the relationship which exists between knowledge of services and demand for services, and to that between the availability of services and satisfaction with services. Thirdly, it focuses on important differences in the attitudes of those caring for younger people and those caring for older people with mental handicaps. Finally, it stresses the growing need for careful planning of future services, especially for the time when carers can no longer cope.     

Exclusions and limitations in children's behavioral health care coverage

OBJECTIVE: The objective of this study was to identify benefit limits, diagnostic exclusions, and service exclusions of private behavioral health care plans that can influence the delivery of care to children. METHODS: A total of 128 commercial, employment-based behavioral health plans were examined for types of benefit limits, service exclusions, and diagnostic exclusions applicable to children. RESULTS: Almost half of the plans had restrictions on the number of outpatient visits, with limits ranging from 12 to 60 clinic visits a year. More than half of the plans had limitations on the number of inpatient days, ranging from 20 to 60 days a year. Diagnoses excluded from coverage included autism, mental retardation, problems related to child abuse, and impulse control disorders, such as kleptomania and pyromania. Half of the services excluded could be categorized as either social and human services or complementary medicine rather than as mental health care. CONCLUSIONS: Plans commonly had service and diagnostic exclusions that could disrupt children's health care. The results of the study emphasize a need to address the types of treatment covered by mental health insurance.     

Use of mental health services in Chile

OBJECTIVE:S: To address the growing burden of mental illness in Latin America, a better understanding of mental health service use and barriers to care is needed. Although many Latin American countries have nationalized health care systems that could potentially improve access to care, significant barriers to care remain. The authors report the results of a study examining mental health service utilization in the general population of Chile. METHODS: The data were drawn from the Chile Psychiatric Prevalence Study, a national household survey of 2,987 persons aged 15 years and older conducted in 1992-1999. As part of the survey, psychiatric diagnoses were obtained by using the Composite International Diagnostic Interview, and respondents were asked about their use of general and mental health care services in the past six months and about their experience of barriers to treatment. RESULTS: More than 44 percent of respondents reported use of any health care services in the past six months, and 20 percent reported use of mental health services. Of the respondents who met criteria for a psychiatric disorder, a large proportion (62 percent) did not receive mental health care. Increasing severity of the psychiatric disorder correlated with increasing frequency of overall help seeking, but only a small proportion of the respondents with a psychiatric disorder sought specialized mental health services. Regional disparities and inequities in access to care were found. In addition, indirect barriers to mental health care, such as stigma and misconceptions about the course of psychiatric disorders, were important deterrents to service utilization, particularly among persons with lower socioeconomic status. CONCLUSIONS: To reduce the burden of mental illness in Chile, additional efforts are needed to address both the direct and the indirect barriers to mental health care, including regional inequities in access to care.