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PubMed1998

Frail bodies, courageous voices: older people influencing community care.

Involving frail older users of health and social care services in decision making presents particular challenges for those committed to hearing the voices of service users. Age Concern Scotland initiated a project in Fife, the User Panels project, intended to enable older people who were unable to leave their homes without assistance to meet together to develop a collective voice expressing the needs and experiences of older service users. This paper reports on an evaluation of that project. It considers methodological questions posed by the evaluation of projects which aim to empower users, as well as discussing key findings from the evaluation. Older people were recruited through contacts in service agencies and other local organizations. The largest group was aged between 86 and 90 years and all were experiencing difficulties relating to poor health, physical frailty or disability. The project was based on a belief in the value of meeting together as a means through which people could develop the confidence to express their views. Those who became members of the panels valued this experience and reported intrinsic benefits related to the social contact, opportunities for learning and development of self-esteem. Evidence concerning enhanced capacity to exercise control over key aspects of their lives was less convincing. The work of the panels was generally well received by local social work and health agencies and had influenced local action in some areas. Responses to some issues raised by the panels generated a less positive response and the article considers reasons for this. The model is considered to demonstrate benefits both for the older people who become involved and for officials seeking to improve the sensitivity of services to the needs of older people.

Journal Article↗

PubMedDate not supplied

[Accessibility of health services for users].

OBJECTIVE: To measure the accessibility to health services and determine a model to explain this accessibility. MATERIALS AND METHODS: All states of the Mexican Republic were included. The measurement of accessibility considers the availability of resources and the perception of barriers. Place of residence, education, participation in the work forces and household conditions were included in the model. RESULTS: The average of availability resources was 64.59% sd 15.68 (range 42 to 100) and the average corresponding to perception of barriers, 87.61% SD 4.04 (range 79.23 to 95.65). Accessibility was 71.50% SD 10.74 (range 56 to 96). The states with highest accessibility were the Federal District and Baja California Sur and the lowest, Chiapas and Oaxaca. The model included education and labor participation (R2 = 0.67, p < 0.05). CONCLUSIONS: Accessibility was determined by socioeconomic factors.

Health Services Accessibility↗

PubMed2003

Reasons for consulting a doctor on the Internet: Web survey of users of an Ask the Doctor service.

BACKGROUND: In 1998 the Swedish noncommercial public health service Infomedica opened an Ask the Doctor service on its Internet portal. At no charge, anyone with Internet access can use this service to ask questions about personal health-related and disease-related matters. OBJECTIVE: To study why individuals choose to consult previously-unknown doctors on the Internet. METHODS: Between November 1, 2001, and January 31, 2002 a Web survey of the 3622 Ask the Doctor service users, 1036 men (29%) and 2586 (71%) women, was conducted. We excluded 186 queries from users. The results are based on quantitative and qualitative analysis of the answers to the question "Why did you choose to ask a question at Infomedica's 'Ask the Doctor' service?" RESULTS: 1223 surveys were completed (response rate 36 %). Of the participants in the survey 322 (26%) were male and 901 (74%) female. As major reasons for choosing to consult previously-unknown doctors on the Internet participants indicated: convenience (52%), anonymity (36%), "doctors too busy" (21%), difficult to find time to visit a doctor (16%), difficulty to get an appointment (13%), feeling uncomfortable when seeing a doctor (9%), and not being able to afford a doctors' visit (3%). Further motives elicited through a qualitative analysis of free-text answers were: seeking a second opinion, discontent with previous doctors and a wish for a primary evaluation of a medical problem, asking embarrassing or sensitive questions, seeking information on behalf of relatives, preferring written communication, and (from responses by expatriates, travelers, and others) living far away from regular health care. CONCLUSIONS: We found that that an Internet based Ask the Doctor service is primarily consulted because it is convenient, but it may also be of value for individuals with needs that regular health care services have not been able to meet.

Access to Information↗

PubMed2006

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.

Attitude to Health↗

PubMed2004

Linguistic sensitivity, indigenous peoples and the mental health system in Wales.

This paper presents findings from a pilot research project to explore the significance and availability of mental health services in the medium of Welsh in Wales, UK. Based on small-scale research with Welsh-speaking mental health service users this article argues that being bilingual can be a significant factor in the complex biopsychosocial matrix that underpins mental health problems amongst Welsh speakers. It also argues that the destructive effects of linguistic oppression, and the difficulties of second language communication for mental health service users, are such that an appropriate health and social care response in Wales involves providing services in a user's preferred language. Service users' views about the current state of bilingual service provision in Wales are presented, which suggests that insufficient attention is being paid to the linguistic needs of Welsh speakers. Eight principles are proposed for mental health service policy and practice in Wales.

Communication Barriers↗

PubMed1998

Evaluation of outcomes and cost-effectiveness of a community behavioral support and crisis response demonstration project.

A behavioral support and crisis response demonstration project authorized by the Minnesota Legislature in 1992 was evaluated. We described the demonstration program, its service users, and satisfaction and concerns with the program of service recipients, their families and careproviders, and county case managers. We also provided follow-up data on the outcomes of the first year service users and gave the service outcomes projected by case managers had the program not been established. These projected outcomes were validated by follow-up of a comparison group of persons unable to access the program's services. Cost-effectiveness was computed from costs of establishing and operating the demonstration program and the actual average costs of the services that were projected to otherwise have been used.

Adolescent↗

PubMed2006

Opportunities for independent living using direct payments in mental health.

Mental health service users have yet to reap the benefits of greater choice, control and independent living, which direct payments have facilitated in other groups of community care users, particularly people with physical disabilities. To redress this imbalance a national pilot to promote direct payments to people with mental health needs in five local authority sites across England was set up and evaluated. The evaluation used a multi-method approach incorporating both qualitative and quantitative data, including individual semi-structured interviews and group discussions with key stakeholders across the pilot sites. This article draws on findings from the pilot evaluation to provide a preliminary understanding of how applicable the independent living philosophy is to mental health and what opportunities direct payments offer for service users. When given the opportunity, service users were able to use direct payments creatively to meet a range of needs in ways which increased their choice, control and independence. This suggests that the benefits of greater independent living through direct payments may be realisable in mental health. However, a number of ways in which the principles of direct payments in mental health could be 'downgraded' were identified. The evaluation results indicate that a thorough understanding of the independent living philosophy needs to be developed in the context of mental health.

Activities of Daily Living↗

PubMed2005

The relationship between social deprivation and unilateral termination (attrition) from psychotherapy at various stages of the health care pathway.

The relationship between social deprivation and attrition from psychotherapy was examined at various stages of the health care pathway. Data providing information on service users' discharge status gave a measure of attrition at different stages along this pathway. On the basis of their postcode, service users were allocated a Townsend deprivation score, which is a measure of social deprivation. Of the sample, 60% terminated therapy prior to agreed discharge at various pathway stages. Service users who failed to attend their first appointment had significantly higher social deprivation scores than those who completed therapy. Early terminators, who stopped attending before their fifth session, had a significantly higher level of social deprivation than the late terminators, and those who completed therapy. The late terminators did not significantly differ from completers on social deprivation. These results support earlier findings showing that socio-economic status influences attrition from therapy. However, socioeconomic status only affects two stages of the pathway - attendance at the first appointment, and the early stage of attending therapy. It does not affect earlier or later stages of the pathway. Applying the health action process approach (HAPA) model to the results, the action/maintenance stage can be represented by attendance for therapy. Socio-economic status influences this stage of the model, because social support and resources are important determinants for compliance. Earlier stages, characterized by HAPA as a decisional/motivation stage thought to be influenced by beliefs, was not affected by social deprivation. It is concluded that attrition from therapy should be studied separately for each pathway stage. Earlier conflicting findings on causes of attrition may have resulted from studying different combinations of pathway stages.

Adult↗

PubMed1995

Prevalence and frequency of health service use: associations with occupational prestige and educational attainment.

The accessibility of health care services has been suggested to be one factor with the potential to ameliorate the health effects of socioeconomic disadvantage. From a randomly selected sample of households in the Lower Hunter Valley region, 2623 adults were surveyed in 1987-88 to identify their reported use of medical, allied and alternative health services during the previous four weeks. There was a higher prevalence of use of the 'usual' general practitioner and medical services among educationally disadvantaged respondents only. No significant differences were evident between educational or between occupational groups in the prevalence of use of either alternative services or health services generally. Fewer occupationally disadvantaged respondents reported using allied health services. There was no difference in the number of health services used. Disadvantaged respondents were more likely to use medical services exclusively. Only educationally disadvantaged service users reported using any health, medical or general practitioner services more frequently than expected. In contrast, only occupationally disadvantaged service users reported using allied health services (and allied health services other than dentists) more frequently. The lack of consistent differentials in use across health services in favour of disadvantaged respondents suggests that a number of health care services may not be responding to the greater need for health care among disadvantaged members of the community.

Adolescent↗

PubMed1999

Exploring 'person-centredness': user perspectives on a model of social psychiatry.

This paper explores service users' experiences of a 'person-centred' mental health service. We describe the development of a model of social psychiatry that places the emphasis on the experiences of the person within social and political contexts. This establishes the foundations of a 'person-centred' approach, the values of which are described briefly. The results of interviews with 20 people are presented, in which their experiences of the service are explored in detail. These interviews reveal the struggle that lies at the heart of the professional-service user dialectic, which relates to issues of institutional power, roles and responsibility, and which places professional staff in conflict with the very notion of 'person-centredness'. No matter how 'person-centred' a mental health service may strive to be, there remain serious obstacles to the full realization of this approach. Despite this critique, there were many things that were valued by those who used the service. More detailed qualitative studies are required to explicate the complex relationships and paradoxes that emerged.

Journal Article↗

PubMed1990

User friendly services.

Consumerism is fashionable in the health service, but there is a danger that it will prove no more than window-dressing. Liz Winn and Allison Quick, who recently wrote a book on user-friendly services, addressed particularly to the managers of community health services, summarise their conclusions, pointing out the possibilities and pitfalls if consumerism is to be taken seriously.

Community Health Services↗

PubMed2005

'Working the system'. Achieving change through partnership working: an evaluation of cancer partnership groups.

AIMS AND OBJECTIVES: To investigate the characteristics and achievements of cancer partnership groups--collaborative service improvement groups formed of NHS staff and service users--in the 34 cancer networks in England, and in particular to explore the influence that such groups had on local cancer services. DESIGN: A qualitative approach employing a structured telephone survey, face-to-face interviews and documentary analysis. PARTICIPANTS AND SETTING: Thirty cancer networks in England with an active Partnership Group completed the telephone survey. From these 30 networks, six networks were subsequently selected from which service users and NHS professionals involved in partnership groups and NHS professionals who were non-members were recruited to take part in face-to-face interviews. RESULTS AND CONCLUSIONS: Partnership groups were established in the majority of cancer networks. Typically, these groups were at network level, been established for less than a year, met once every 2 months, and were populated with both service users and health-care professionals. Five common activities and achievements were identified: establishment of the group itself; acting as a 'reference' group for consultation; networking and representation on other groups; patient information and communication and proactive influencing. Activities progressed in scale and complexity as groups evolved. Groups had learnt the basics of change management and some identified a more sophisticated understanding of change processes in the NHS as essential for the group's motivation and survival. When gauging the impact of involvement strategies it would seem important to subscribe to broad indicators of success that include both process and outcome measures.

Cancer Care Facilities↗

PubMed2004

How, and when, can I restrain a patient?

The need to restrain service users will vary according to the area of practice within which practitioners are employed. Many of the principles that relate to the issue of restraining service users are, however, applicable to all, or most, health and social care settings. While the emphasis should be on pre-emptive action, wherever possible, in order to prevent the need to restrain, there are some occasions on which the risks to the service user, or others, of inaction may outweigh those of taking action. Some of the key issues are discussed in this paper.

Adult↗

PubMed2006

How is the collaborative-practice competency operationalized by mental health workers?

The recovery-focused competencies currently endorsed in policy emphasize collaborative relationships between mental health workers, service users, families and communities. Based on a qualitative research methodology, multi-disciplined practitioners shared their perceptions as to how mental health workers could operationalize collaborative relationships. Two community mental health centres were the setting for three focus groups, where 16 voluntary participants contributed to focused discussions. Participants discussed the pragmatics of how they work collaboratively; identifying knowledge and attitudes that underpin their practice, and elaborating on environmental influences that impact on a collaborative approach. Findings from the study recommend the practitioner role as one of advocacy and facilitation. The collaborative approach, which is inextricably related to the quality of the practitioner-service user relationship, aids sense-making for service users of their mental health experience. This requires of practitioners the qualities of openness, expression of hope, genuineness and people-first attitude that supports the building of knowledge rather than communicating it.

Clinical Competence↗

PubMedDate not supplied

Breast awareness project for women with a learning disability.

In 1995/6, while conducting a quality assurance evaluation in a residential group home for adults with a learning disability, the subject of breast screening and the importance of early detection of breast abnormalities was raised by a member of staff. At the time, the Mulberry Trust had a quality standard that women between 50 and 64 years who are supported in continuing care should attend breast screening clinics on a 3-yearly basis if they wish. A pilot scheme was devised based on the premise that breast awareness for service users should be promoted. It was decided that the scheme should include a breast examination, conducted on a monthly basis, ideally by the service users themselves, or by suitably trained staff on their behalf. The pilot scheme was implemented using available research and training was provided for qualified nursing staff within the trust. The training covered breast cancer prevention and breast awareness. After 7 months the scheme was evaluated and changes were made to policy and practice, including consultation with the trust's ethics panel regarding implementation of procedures. Training for staff in breast awareness continues and the scheme is slowly being introduced across the trust to enable all service users to be involved, both in residential homes and community settings. However, in future, the emphasis will be on identifying changes in the breast during normal care routines, such as bathing and dressing, as opposed to formal, clinical examination.

Adult↗

PubMed1997

'What do you think?': a qualitative approach to evaluating individual planning services.

An established individual planning service was evaluated using a service-user-centred approach, which looked at the extent to which people are involved in the process and their understanding of its nature and function. Responses recorded during interviews with service users, their keyworkers and some family members are complemented with data collected from participant observation of individual planning meetings. The findings suggest that the majority of service users able to speak for themselves who were interviewed have a good understanding of the planning process and find it a positive experience; this is supported by participant observation data. Those speaking on behalf of people unable to speak for themselves are unclear as to how much understanding the group has of the process. Observation data suggest that people needing others to speak on their behalf are excluded from discussion during meetings more often than they are included. Recommendations are made for developing the service and providing additional support for keyworkers, building upon the considerable progress made during the service's inception.

Adult↗

PubMed2004

Link Family Support - an evaluation of an in-home support service.

A significant body of research has shown that parents who have a child or a dependent adult with a disability experience significant and persistent levels of stress. One of the recognized strategies for coping includes the provision of in-home practical support. Enable Ireland provides a range of services for children and adults with a physical disability. The present study explored home support services with a sample of 16 families of service users of Enable Ireland Cork. Practical support was deemed to be whatever support or intervention requested by the parent of the child/dependent adult which afforded the service user the opportunity to engage in social/recreational opportunities and that gave the parent free time. Sixteen members of the chosen families were interviewed (15 mothers and one father) using a semi-structured interview schedule and a standardized stress measure before and after the introduction of Link Family Support (LFS). LFS was put in place for a period of 12 months, tailored to the families and service users' individual needs. Although levels of stress continued to be high and scores on the Parenting Stress Index (PSI) did not show a statistically significant reduction after the programme, reported stress levels had improved. Parents reported LFS to be very helpful in reducing perceived stress and improving family's quality of life through providing free time and access to leisure and recreation facilities. This study provided limited but clear evidence of the need for regular, flexible, in-home support for families with children and dependent adults with a disability. LFS provided a personal, regular and effective means of meeting this need as the findings of this study demonstrated.

Adolescent↗

PubMed2005

Existential needs of people with psychotic disorders in Pôrto Alegre, Brazil.

BACKGROUND: Needs for care in service users with schizophrenia are often defined by professionals and focus on basic needs for health and social care rather than broader existential issues. AIMS: To examine the perceptions of users and formal and informal carers of the needs of people with non-affective psychosis. METHOD: A qualitative study was conducted involving focus groups of service users and informal and formal carers in a major Brazilian city. RESULTS: Existential needs were the most important theme for people with psychotic disorders. Informal and formal carers mainly regarded such needs as secondary to needs for health, housing, leisure and work. Carers usually reduced the existential questioning of the ill person to symptoms or the result of a privation such as lack or failure of medication and its consequences. CONCLUSIONS: We require an approach to service users wherein respect and understanding are prized as the first needs from which all others will naturally follow. We also need to give greater priority to existential issues in validated schedules that measure needs in clinical work and research.

Attitude to Health↗