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PubMed1994

Schizophrenia sufferers and their carers: a survey of understanding of the condition and its treatment, and of satisfaction with services.

This paper reports a simple random survey of all identifiable schizophrenia sufferers, not in long-term residential or hospital care in one Health Board area. The survey was carried out (1) to assess service users' and carers' understanding of the illness, and (2) to assess perceptions of services by people with schizophrenia and their carers. A response rate of 55.6% from a sample of 142 was achieved; 79 service users and 22 carers were interviewed. In general service users reported a limited understanding of the condition of schizophrenia and its treatment. Many reported an understanding that was either neutral or negative, as assessed by the Knowledge about Schizophrenia Interview'. Carers generally had a more positive understanding of the condition than the user group, but considerable scope for improvement by educational intervention remained. It was found that people with schizophrenia generally perceived the service in a positive light, but had specific dissatisfaction with regard to medication, vocational training and hospitalization. Both service users and carers were dissatisfied with information and advice from professionals and identified these as areas that require improvement. On the whole carers expressed less satisfaction with services than did people with schizophrenia.

Adult↗

PubMed2006

Behavioral health services utilization among older adults identified within a state abuse hotline database.

PURPOSE: This study examined the extent to which older adults identified in a statewide abuse hotline registry utilized behavioral health services. This is important as mental health issues have been identified as a high priority for filling gaps in services for victims of mistreatment. DESIGN AND METHODS: We compared Medicaid and Medicare claims data for two groups of older adults: those using health services and identified within a statewide abuse hotline information system and those claimants not identified within the hotline database. RESULTS: Behavioral health service use was greater among those identified in the abuse hotline database. The penetration rate (percentage of service users out of all enrollees) for Medicaid behavioral health service claims was more than twice that of other service users, with costs of services about 30% greater. Analyses of Medicare data revealed that the penetration rate for those in the hotline data was almost 6 times greater at approximately twice the cost compared to other service users. IMPLICATIONS: The results provide evidence for previous assumptions that mistreated individuals experience a higher rate of behavioral health disorders. As mental health screening by adult protective services is rarely conducted, the results suggest the need to train investigators and other service providers to screen older adults for behavioral health and substance-abuse issues as well as physical signs of abuse. Further research on the relationship of abuse to behavioral health might focus on collection of additional data involving more specific victim-related characteristics and comparisons of cases of mistreatment versus self-neglect.

Aged↗

PubMed1998

User involvement and the NHS reforms.

The policy of 'user involvement' in the UK National Health Service emerged during the 1990s along with the reforms that created an internal market. Despite the official rhetoric, progress has been limited. Critics suggest that, not only was the policy flawed in its conception by the construction of service users as consumers and the conflation of consumerism with empowerment, but collaborative models of involvement have tended to legitimate rather than challenge existing provision. Some commentators have questioned the value of user involvement initiatives and proposed that alternative approaches, such as a strengthening of procedural rights or alignment with broader political campaigns, would be more appropriate. The low prominence given in the recent Government White Paper The New NHS1 to the contribution of service users, however, represents less of an ideological shift than a concentration on other, in the Government's view, more pressing priorities: namely, a concern to address the problems of public legitimacy and low staff morale by engaging in greater public participation and giving health professionals a more central role. The result has been a weakening of the users' voice by a conflation of user involvement with public participation and giving health professionals the authority to define users' needs for them. Service users risk, not only having their contribution devalued, but losing the right to an independent and distinctive voice. There is a real danger that the issues of user involvement will not be included on local agendas and the disparities between provision and need and between professionals' and users' views will increase.

Journal Article↗

PubMed2006

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.

Ambulatory Care Facilities↗

PubMedDate not supplied

Ongoing consent to care for older people in care homes.

Obtaining informed consent is a fundamental part of the care-giving process. Current policy documents emphasise the importance of including patients in planning their care. This article explores the concept of consent and the challenges to this concept for older people in long-term care, where consent is not a one-off event requiring a 'consent form', but just one stage in the continuum of involvement for service users. At one end of the spectrum, service users may be unaware that they have a service user plan (care plan), while at the other end they may be enabled to complete an advance statement of their wishes, thus demonstrating significant involvement in planning their care.

Advance Directives↗

PubMed2005

Community psychiatric nursing: focus on effectiveness.

The focus for provision of mental health services is now the community in most developed countries. Different ways of organizing community mental health services are evident in the literature. Community psychiatric nurses (CPNs) have a key role to play in these services but the literature indicates that the CPN role varies from area to area within different models of service provision. This paper presents the findings of a study in which 13 service users and 15 CPNs in five focus groups discussed the effectiveness of mental health service. Selected staff and service users were chosen from a representative range of community mental health services across Northern Ireland. Service users expressed concern at the variety of CPN and other professional roles within multidisciplinary teams and some CPNs expressed dissatisfaction with their role and with role boundaries within teams. These findings suggest that further work is needed within community mental health services to ensure the role of the CPN remains effective and develops to meet the needs of service users.

Community Mental Health Services↗

PubMedDate not supplied

Using an interdisciplinary approach to training to develop the quality of communication with adults with profound learning disabilities by care staff.

The study examines the effects of training on care staff's communication to service users with profound and severe learning disabilities. An interdisciplinary therapeutic training programme aimed to improve care staff's cognitions about disability, to alter their communicative practice and to provide them with practical solutions to the communication difficulties of the service users. Participants were each video recorded with a single service user before and during training. The recordings formed the basis of the communication workshops. Both baseline and final recordings were evaluated using criteria based on verbal and non-verbal interactions. The criteria assessed alterations in the care staff's language use, verbal responses, and interpretation and praise of service users' communication. The use of posture, position, eye contact and gaze monitoring during interactions was also evaluated. The pre- and post-training analysis demonstrated alterations and improvements in care staff's use of verbal communication as well as gaze monitoring and position during interactions. A follow-up study 6 months later showed many of the post-training positive changes had been maintained or had continued to develop. It is suggested that the success and implementation of the communication training in the workplace was due to the collaborative therapeutic nature of the training package. The interdisciplinary and integrated training programme had facilitated a willingness to change and led to the development of a positive view of each other's practice. The recommendations from each of the therapist's training programme formed an integral part of the care staff's new care plans for each service user. This contributed to the continuing development the care staff's therapeutic role.

Adult↗

PubMed2000

Hearing voices and listening to those that hear them.

This paper is concerned with the experience of service users of a mental health Trust. The shared experience of the particular service user group is that of auditory hallucinations. The paper argues that mental health practitioners have, traditionally, not listened effectively to the subjective experience of voice hearing. By creating an environment in which service users can discuss their shared experience, the mental health practitioner can facilitate learning from experience and the development of 'common-sense' management strategies. Such strategies do not demand, or require, text book answers from health care professionals, but emerge from service users, through living with voice hearing. The work is interpreted through Parse's theory of human becoming and Marius Romme's work with 'Hearing Voices'.

Hallucinations↗

PubMed2004

Pathways to care in first episode psychosis.

In order to inform the development of appropriate local services for early intervention in psychosis, a survey was conducted of the experiences of service users and their carers at the time when signs of psychosis were first noted. Eighteen service users and 12 carers were surveyed by questionnaire and interview. Both service users and carers recognized early signs of psychosis, but were often frustrated in their attempts to find help, particularly by lack of knowledge of whom to approach and unhelpful responses from professionals. The consistent themes that emerged included the young age of onset (mean age 17.2 years), poor recognition and lack of appropriate treatment at an early stage in primary care, delay in treatment because of associated substance misuse, and the inappropriateness of admission to a general adult psychiatric ward. This survey has given a local context to findings from national and international research studies. This will enable us to set up a local service which is responsive to the views and needs of service users and carers in Rotherham.

Adolescent↗

PubMed1998

Evaluation of the role of the health care assistant within a community mental health intensive care team.

BACKGROUND: Recent changes in UK legislation concerning community care of mentally ill people have initiated comprehensive changes in the delivery of healthcare. The NHS and Community Care Act (Department of Health 1990) added impetus to the run down of residential facilities and the speed of development of community mental health services. A community mental health intensive care team was established in Essex and employed a high ratio of unqualified to qualified staff. At a time of tension within the Health Service around issues such as skill mix and unemployment among qualified nurses, it was perhaps not unreasonable that the introduction of healthcare assistants might be viewed with suspicion, as a way of diluting the workforce with a less expensive alternative. The importance of evaluating new services is self-evident. OBJECTIVE: The growth of consumerism has led to acknowledgement that mental health service users' views have a role in shaping service provision. An attempt was made to determine the service users' evaluation of the role of the healthcare assistant within a community mental health intensive care team. RESULTS: The use of Kelly's (1955) repertory grid technique and theoretical sampling provided rich descriptions of the role of the healthcare assistant as experienced by service users. Analysis of the healthcare assistant-client relationship demonstrated a client-centred approach was apparent with considerable emphasis placed on the personal qualities of the care provider, supporting Roger's (1961) view that 'healing' comes not so much from the therapists 'techniques', as from their personality. CONCLUSION: It is self-evident that the clients' expressed satisfaction with the care provided by healthcare assistants argues against the professional ideology of nursing, which proposed that nursing may only be given by those with a statutory qualification. A complementary role for healthcare assistants in the provision of mental health care is proposed.

Community Health Workers↗

PubMed2006

The response to challenging behaviour by care staff: emotional responses, attributions of cause and observations of practice.

BACKGROUND: Previous studies have attempted to apply Weiner's attributional model of helping behaviour to care staff who work with service users with intellectual disabilities and challenging behaviours by using studies based on vignettes. The aims of the current study were to investigate the application of Weiner's model to 'real' service users with intellectual disabilities and challenging behaviours and to observe the care staff's actual responses to challenging behaviours displayed by service users. Also, to compare care staff attributions, emotions, optimism, willingness to help and observed helping behaviours for self-injurious behaviours in comparison to other forms of challenging behaviours. METHOD: A total of 27 care staff completed two sets of measures, one set regarding a self-injurious behaviour and the other regarding other forms of challenging behaviour. An additional 16 staff completed one set of measures. The measures focused on care staff attributions, emotions, optimism and willingness to help. Also, 16 of the care staff were observed interacting with the service users to collect data regarding their responses to challenging behaviours. RESULTS: For both self-injurious behaviours and other forms of challenging behaviour, associations were found between the care staff internal, stable and uncontrollable attribution scores and care staff negative emotion scores. However, no associations were found between the care staff levels of emotion, optimism and willingness to help. Some associations were found between the care staff levels of willingness to help and observed helping behaviours. There were significant differences between the care staff attribution scores with higher scores being obtained for uncontrollable and stable attributions for other forms of challenging behaviours. No significant differences were found between the care staff emotions, optimism, willingness to help and observed helping behaviours. CONCLUSIONS: The results did not provide support for Weiner's attributional model of helping behaviour. However, a preliminary model of negative care staff behaviour was derived from the exploratory analyses completed. This model proposes that there are associations between internal, stable and uncontrollable attributions and negative emotions in care staff and also between negative emotions and negative behaviours displayed by care staff in response to the actions of service users.

Adult↗

PubMed2004

Welfare rights services for people disabled with arthritis integrated in primary care and hospital settings: set-up costs and monetary benefits.

OBJECTIVE: To quantify the set-up costs and monetary benefits of a welfare rights service integrated within an NHS service provider, that selects eligible patients using the Health Assessment Questionnaire (HAQ) and offers welfare rights advice to assist in application for Disability Living Allowance and Attendance Allowance. METHOD: (1) DESIGN: a cost evaluation of a social intervention, screening with the HAQ and welfare rights advice in primary care and hospital settings. (2) SETTING: Eight general practices and four hospital rheumatology out-patient departments were selected from four localities in the southwest of England. (3) PARTICIPANTS: Two hundred and sixty-eight eligible patients with arthritis accepted an interview with a welfare rights officer (WRO) from a sample of 1989 service users identified from GPs' records and hospital out-patient lists. Two hundred and forty two service users expressed an interest in take up of the social intervention. (4) Service users with a HAQ score >/=1.5 were contacted by telephone and offered an appointment with an experienced WRO to help them complete a welfare benefit application form. A 'micro-costing' study was undertaken with assessment of monetary benefits received. RESULTS: The indicative set-up costs of similar welfare rights services are pound 8125 in a GP setting and pound 9307 per annum in a hospital setting at 2002 prices. Total annual unclaimed Disability Living Allowance/Attendance Allowance granted to successful claimants was pound 184,382 in the GP setting (n = 84 from 137) and pound 169,309 in the hospital setting (n = 79 from 131). CONCLUSIONS: Welfare rights advice received during a visit to a GP practice or a hospital out-patient department can substantially reduce the level of unclaimed benefit in arthritic populations including the elderly; with mobility and care difficulties. A welfare rights service integrated within a GP practice or hospital that screens people with arthritis using HAQ scores and encourages those with scores >/=1.5 to see a WRO for help with welfare benefit confers monetary benefits for service users that substantially outweigh set-up costs.

Aged↗

PubMed2003

A welfare benefits outreach project to users of community mental health services.

BACKGROUND: Many psychiatric service users are entitled to welfare benefits, but work from the UK and the USA suggests many are either unaware of their entitlements or find the benefits system difficult to access. AIMS: This study has four aims: 1) to assess the extent to which people using a range of community mental health services receive the welfare benefits to which they are entitled; 2) to calculate the impact on income of receiving help from specialist benefits advisors; 3) to ascertain sociodemographic risk factors for under-claiming; and 4) to identify reasons for under-claiming related to the claims system itself, in order to make recommendations for routine practice. METHODS: This report makes use of data collected during a welfare benefit uptake project by Mind in Croydon staff (MF-G, RO, RP). Benefit assessments were offered to a total of 153 people attending any Croydon resource centre (run by the Health Service) other than the pilot site, or day centre (run by Social Services) for people with mental health problems. All those who were identified as under-claiming were offered help pursuing claims through to conclusion. We used quantitative methods to address the first three aims; qualitative methods in the form of case studies were used to address the fourth. RESULTS: One-third (34%) of people seen were getting their correct entitlement and two-thirds (66%) were under-claiming. All those found to be under-claiming who accepted all the help offered (87 out of 99 underclaimants) did gain additional benefits as a result, of a mean annual amount of pound 3079 each. Under-claiming was more frequent in those under 65 years of age, but having had previous advice or having a care manager did not protect against under-claiming. A number of reasons for under-claiming were identified. CONCLUSIONS: For a large and possibly increasing proportion of people using community mental health services, the current benefits system necessitates frequent advice and help by expert advisers to avoid poverty due to underclaiming. The adverse effects on quality of life and mental health may be significant, as are the economic implications of correcting this level of under-claiming.

Community Mental Health Services↗

PubMed2000

Users' views on palliative care services: ethical implications.

This article is based on the findings of a study that elicited the views of terminally ill patients (n = 15), their carers (n = 10) and bereaved carers (n = 19) on the palliative care services they received. It explores the range of ethical issues revealed by the data. Although the focus of the original study was on community services, the participants frequently commented on all aspects of their experience. They described some of its positive and negative aspects. Of concern was the reported lack of sensitivity to the role of the family among health professionals. The family, as carers, service users and advocates, represent a challenge to professional boundaries and the ethical norms of confidentiality and best interest. The accounts reveal the complexity of the ethical issues that characterize terminal care, issuing specific ethical challenges to nurses and other health professionals involved in this field.

Caregivers↗

PubMed1989

Standards of care for area mental health services.

A provisional set of standards of care was derived from a quality assurance strand of a wider research project, which reported the development of evaluation strategies for area integrated mental health services (AIMHS). In contrast to most published standards, they apply to all facets of care in a comprehensive catchment area mental health service, whether clinical or functional, community or hospital based, urban or rural, or managed by the public, private or voluntary sectors. We review briefly existing sets of standards of mental health services and report the process of development of standards of care, each with sub-sets of performance indicators and examples. While the AIMHS standards and a companion quality assurance manual are still undergoing refinement, they offer a guide for mental health professionals to the provision of services, and a checklist to service-users of services that should be available to them at every stage of care in a mental health system.

Accreditation↗

PubMed2001

Organizational values in general practice and public involvement: case studies in an urban district.

A multiple case study design was used to explore dimensions of organizational values in general practice with respect to developing public involvement. The study was undertaken in an urban district in England with data collected through in-depth individual and focus group interviews with service providers and service users. Four general practice organizations were randomly selected for study after sorting all in the district according to their record of developing involvement activities. The case studies provide evidence of how organizational values can differ markedly in general practice in relation to ideas of public involvement, with consequences for the quantity and quality of activities for involving local people and service users. The differences manifest themselves in the beliefs and attitudes of service providers about the purpose of the organization and the types of relationships that are appropriate with service users and local people. Service users appear to be very perceptive to the underlying ethos and purpose to their practice organization and this affects their responsiveness to initiatives for their involvement. The dimensions of the different values found in the study appear to be essentially the same as a number of established empirical findings of variations in values in general practice: an orientation to a narrow medical role and to general practice as a business are associated with a low valuation of involvement; an orientation to teamwork and to a broader social role appear more congruent with the development of involvement. Power is a critical issue in this setting with evidence in the study of the dominance of the medical practitioners in establishing organizational values and the nature of public involvement activities.

Adolescent↗

PubMed2004

Developing a New Zealand casemix classification for mental health services.

This study aimed to develop a casemix classification of characteristics of New Zealand mental health services users. Over a six month period, patient information, staff time and service costs were collected from 8 district health boards. This information was analysed seeking the classification of service user characteristics which best predicted the cost drivers of the services provided. A classification emerged which explained more than two thirds of the variance in service user costs. It can be used to inform service management and funding, but it is premature to have it determine funding.

Journal Article↗

PubMedDate not supplied

Developing the theoretical basis for service user/survivor-led research and equal involvement in research.

AIMS AND METHODS: This article, written from a service user/survivor perspective, explores a hypothesis which seeks to offer a more systematic basis for the full and equal involvement of mental health service users/survivors in both the research process and research structures more generally. The hypothesis challenges traditional emphasis on positivist assumptions about the priority of values of 'distance', 'neutrality' and 'objectivity' (which it argues discriminate against service users and their experiential knowledge). It explores instead the idea that 'the shorter the distance between direct experience and its interpretation, then the less likely resulting knowledge is to be inaccurate, unreliable and distorted.' RESULTS AND CONCLUSIONS: The proposal discusses ways in which such (objective and subjective) distance may be reduced, to improve the quality of research, to enable more equal involvement of service users and their direct experience and to make it possible for non-service user researchers to work alongside service users on more equal terms.

Attitude to Health↗