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PubMed1995

The life situation of a long-term psychiatric patient: some restrictions in, and possibilities of, open care.

This paper describes and analyses, from a sociocultural viewpoint, the ways of life of discharged long-term psychiatric patients in northern Finland. The paper focuses on subjectivity: control of life and fundamental experiences in life. The data consist of interviews with 25 outpatients who have moved to live in residential homes, rehabilitation centres or their own homes after receiving preparatory training in the psychiatric hospital. The findings suggest that the way of life of the outpatients did not significantly differ from that of other people belonging to the same generation of Finns. With respect to control of life, a conspicuous feature was the strong tendency to let themselves be led by others, and to self-sacrifice for the good of others. For the patients, independence was the best aspect of open care. Fear for being branded as a psychiatric case or as a former mental patient threatened the patients' external control of life. The central element of control of life of the Finns is work. The outpatients thought work a matter of honour and they did not find their present, inactive way of life satisfactory.

Activities of Daily Living↗
PubMed1996

A focus group inquiry into the perceptions of primary health care teams and the provision of health care for adults with a learning disability living in the community.

This study addresses the primary health needs of adults with learning disabilities living in the community. Policies specific to this client group and incorporating the ideology of normalization are noted and evidence of their implementation is sought. Previous research suggests that the adoption of a social rehabilitative model of care may have resulted in the neglect of health care needs. The recent closure of a local, subnormality hospital provided a critical situation and context for the study. The research question is, how do primary health care teams perceive the needs of adults with learning disabilities living in the community, and are they meeting their needs? Three primary health care teams formed the sample and data were obtained through semi-structured, focus group interviews. A conceptual framework developed early in the study influenced both the interview guide and the data analysis. The study suggests that practitioners working within primary health care teams have a limited awareness of the health care needs of adults with learning disabilities. Contributing factors were identified and include: negative attitudes towards the concept of normalization; inadequate education; a shortfall in financial and human resources; and poor collaboration with the specialist team.

Adult↗
PubMed1998

Severe mental illness, statutory supervision and mental health nursing in the United Kingdom: meeting the challenge.

Within the United Kingdom a combination of limited resources and public fears about the behaviour of mentally ill people living in the community has led the government to prioritize those with severe mental illness. In support of this legislation has been passed which provides for those mentally ill deemed 'at risk' to be supervized in the community against their will. This supervisory role will be mainly undertaken by mental health nurses. Through examination of relevant British and American literature, this paper argues that mental health nursing at a national level lacks a defined role which the new legislation may provide, thereby enhancing the profession's voice in overall mental health policy formulation. Such a role, however, also poses important questions for mental health nurses' practice, their relationships with users, colleagues and the wider society. Such issues may have unforeseen negative consequences for users. It is argued that the legislation will pose important dilemmas for mental health nurses in these domains. It is argued that a proactive research agenda needs to be established which is relevant and of use to practitioners when confronted with issues in their supervision role. Areas for future research are suggested.

Aftercare↗
PubMed1999

A descriptive survey to identify the perceived skills and community skill requirements of mental health staff.

Throughout the 1990s mental health care has shifted from a hospital to a community-based service. Government policy indicates that staff require further education as a result of the shift to community care. However, none of the United Kingdom policy documents or mental health literature prescribes what education is required. Consequently this multidisciplinary study aimed to identify what skills, if any, were required by hospital-based staff to move to a community-based working environment. Study findings suggest advantages in perceiving skills as overlapping and interconnecting. Five common core skills and skill differences between professional groups are identified. It is argued that core skills are central and common to all groups and specialist skills are those that distinguish professional groups one from another and different grades of staff within professional groups. While problems of multidisciplinary education are considered, nevertheless a case is made for educating staff in core skills within a multidisciplinary environment which may be beneficial in achieving community care goals.

Community Mental Health Services↗
PubMed2001

Evaluating a community nursing service: listening to the voices of clients with an intellectual disability and/or their proxies.

The aim of this study was to evaluate a specialist nursing service programme for people with an intellectual disability residing in the community. It is important to correct the imbalance in the literature that has neglected the voices of the clients themselves or denied expression by their proxies. The aim of the study was to gain a better understanding of matters of importance for clients and their families and to involve them in the evaluation of a service that directly affects their care. Only three clients were able to participate; however, 17 parents (next of kin) agreed to be interviewed. In-depth interviews were audio-taped, transcribed and analysed relating to the questions asked and were checked against the domains of the nursing practice in the disability area: continuity of care, advanced nursing practice, education and credentialling, personal and professional attributes, primary health care, and normalization. The findings confirm the high regard in which the programme is held. Service evaluation is crucial in providing evidence for programme funders. The favourable outcome of this evaluation meant that the programme gained funding for another few years.

Adaptation, Psychological↗
PubMed1998

A longitudinal study of the quality of life of older people with intellectual disability after leaving hospital.

A study was made of the quality of life of 29 older people with intellectual disability who left hospital to live in ordinary three- or four-bedroom houses. A short version of the Questionnaire on Quality of Life was used to measure quality of life before moving and at three points in the first 53 months after changing residence. Results showed that there were improvements in quality-of-life subscales in the first 41 months with an eventual levelling out after 53 months. Social and leisure activity have been identified as particular important in the quality of life of older people. Therefore, items from the scale that measure participation in community leisure activities, contact with people without intellectual disability during these activities and engagement in leisure activities within the home were selected for detailed analysis. These data also showed increased activity and contacts in the first 41 months with a levelling out after 53 months.

Activities of Daily Living↗
PubMed1998

Balancing restriction and freedom in the care of people with intellectual disability.

The case of a 50-year-old man with severe intellectual disability is described. After 20 years of institutional care, the subject was moved to a newly opened community group home. His physical and mental health deteriorated at this location after unproven allegations of sexual abuse which had taken place whilst he had been living in the institution. Although the subject's health continued to deteriorate, there was resistance to his readmission to the same hospital for assessment. He had always needed to be cajoled into eating, but this approach had not been followed by the home which had contributed towards his weight loss. The situation the subject, the carers and the health personnel found themselves in illustrates how problematic it is to find the right balance between restrictive practices and respect for an individual's choice.

Activities of Daily Living↗
PubMed1998

Swedish and English adolescents' attitudes toward the community presence of people with disabilities.

Predictions derived from North American formulations of normalization suggest that contemporary care policies for people with intellectual disabilities will have a positive impact on societal perceptions of this group. To test this, adolescents' attitudes towards the community presence of people with disabilities in a normalization-advanced country (Sweden) and a relatively less normalization-advanced country (England) were compared. It was expected that Swedish and English participants would hold equally positive views of people with a non-intellectual disability, whereas English participants would hold less positive views than Swedish participants of people with an intellectual disability. The results gave limited support to this expectation when dimensions of participants' attitudes derived from a factor analysis were analysed. These results are discussed with reference to other factors that may influence attitudes in the two countries. In addition, implications for future research and practice are outlined.

Adolescent↗
PubMed1999

Opportunity and the promotion of activity among adults with severe intellectual disability living in community residences: the impact of training staff in active support.

Active support, a package of procedures which includes activity planning, support planning and training on providing effective assistance, was introduced in five community residences serving 19 adults with severe intellectual disability following a multiple baseline design. The residents were directly observed to ascertain the level of assistance they received from staff and their engagement in activity. The introduction of active support increased the levels of assistance residents received, their engagement in domestic activities and their total engagement in activity. The intervention did not affect the level of social engagement. Across individuals, increases in assistance and engagement in activity were significantly and positively correlated. Both were significantly inversely related to resident adaptive behaviour. At baseline, staff gave more attention and assistance to people who were behaviourally more able. After the introduction of active support, receipt of attention was unrelated to adaptive behaviour and the behaviourally less able received more assistance. The disparity in activity between the more and less able was reduced. Gains were maintained in the majority of houses.

Activities of Daily Living↗
PubMed1999

Direct service staff and their perceptions of psychotropic medication in non-institutional settings for people with intellectual disability.

Previous studies have surveyed a variety of service providers in school and institutional settings, and reported a pervasive lack of education and training with regard to the use of psychotropic medication in people with intellectual disability. Because an increasing number of people with intellectual disability are living in the community and since many of these people receive psychotropic medications, the present study extended research in this area by surveying direct service staff to determine their perceptions, knowledge and opinions with regard to the use of psychotropic medication in non-institutional settings for individuals with developmental disabilities. Consistent with the findings of previous studies, a majority of the 334 respondents in the present study reported that they had not received adequate training in the area of drug treatment The knowledge and skills deficits of direct service staff appear to represent a significant barrier to the appropriate monitoring and management of pharmacotherapy for individuals with intellectual disability. Therefore, a systematic training programme to educate direct service staff about psychotropic medication needs to be designed, implemented and disseminated on a broad scale.

Attitude of Health Personnel↗
PubMed1999

The Thomas S. case: report on progress with court compliance issues.

The present paper is a brief summary of the progress which has been made in the Thomas S. case, a U.S. Federal Court lawsuit The suit focused on adults with intellectual disability who had been inappropriately placed in state psychiatric hospitals in conditions which violated their constitutional rights. These constitutional rights include safety, protection from harm, treatment under safe conditions, freedom from undue restraint, and minimally adequate habilitation or treatment The present report summarizes the progress made by the 239 class members after they had received a Thomas S. service plan for 6-24 months. Overall, the results suggest that the class members have made significant progress in several areas. Two areas needing continued attention are the challenging behaviours of some class members and their lack of employment opportunities.

Adult↗
PubMed1999

Supporting individuals with intellectual disability and challenging behaviour in integrated work settings: an overview and a model for service provision.

An overview of supported employment and its historical context is examined, and supported employment for individuals with both intellectual disability and challenging behaviour is discussed. A proposed model for working with such individuals is briefly outlined. This model is based on previous work in the field, and is characterized by a multi-component approach which addresses the issues of both support and behavioural intervention.

Behavior Therapy↗
PubMed2000

Continuity and change in the use of residential services by adults with intellectual disability: the Aberdeen cohort at mid-life.

The present paper reports a follow-up study of a representative cohort of people with intellectual disability, now in middle age, who entered adult services on leaving school in the late 1960s, and whose adult years have coincided with a period of radical policy change and considerable service expansion. The present authors focus on the changes which have taken place in their use of residential services over this period. Firstly, the situation in early adulthood when they were last studied is examined. At this time, 60% of the cohort were still living at home, almost all with both parents. The remaining 40% were in institutions, mainly long-stay mental handicap hospitals. Out-of-home placement is associated with gender (maleness), challenging behaviour, and the absence of one or both parents. The present authors compare this with the situation 20 years later. The most significant change in this time is the expansion of the community sector, accounting for about half of the surviving cohort, with numbers still at home or in hospital correspondingly reduced. Almost half of the cohort had experienced little or no change in residential situation. On average, they were less intellectually and socially able than those who had moved into community provision.

Activities of Daily Living↗
PubMed2001

Visual impairment in adult people with intellectual disability: literature review.

The present paper reviews studies on the prevalence of visual impairment (VI) in adults with intellectual disability (ID). Every publication describes an alarming prevalence of blindness and VI. Cataract and keratoconus were common. Many cases of poor distance vision were treatable by ordinary spherical or astigmatic glasses, but few people had had such prescriptions. Elderly residents in community and institutional care often did not receive glasses for near vision. Professional assessments disclosed higher prevalences of VI than questionnaires mailed to the care personnel. The prevalence of VI increased dramatically with the severity of ID and with age. Regular professional assessment of eye disorders, visual acuity and refraction are warranted in residents in both hospital and community care.

Activities of Daily Living↗
PubMed1998

Chronically mentally ill individuals re-entering the community after hospitalization.

The purpose of this phenomenological study was to increase the understanding of the experiences of chronically mentally ill individuals who are re-entering the community after hospitalization. Ten individuals from an acute care psychiatric hospital who had had two or more admissions within a 12-month period were interviewed, shortly before discharge and subsequently between two and four times while in the community. Three interrelated themes emerged. First, at the time of discharge, the optimism of the participants about returning home was tempered by a realistic recognition of their problems. As time passed, their problems seemed to become their preoccupying focus and optimism faded. Second, for most of the participants, relationships with others, positive, negative or both, played an important role in their return to home and community. Third, participants who experienced more positive social relationships also described individual achievements and community involvement. The re-entry process was not a smooth transition for these individuals.

Adaptation, Psychological↗
PubMed1999

Chronic mentally ill individuals reentering the community after hospitalization. Phase II: The urban experience.

The purpose of this qualitative study was to explore the experiences of persons reentering an urban community after hospitalization for mental illness. The sample consisted of five men and three women, aged early 30's to mid-50's, mostly diagnozed with schizophrenia, and who had had several hospitalizations within the previous year. Most returned to places where they had lived before, frequently to boarding homes for former psychiatric patients. Most lived alone. Each participant was interviewed shortly before discharge and one to two times in the community. The tape-recorded interviews were analyzed according to the Giorgi method. Three themes emerged from the data, related, respectively, to the hospital and its environs remaining a focus of the participants' lives, the added burden of social and financial conditions, and the presence of goals which nevertheless had barriers to their achievement. Contrasts are drawn with the findings of Phase I (Montgomery & Johnson 1998), in which there was found a much stronger sense of discharge marking a new beginning. The findings add to our knowledge about what it is like for chronic mentally ill individuals to live outside hospital, but also raise questions about the influence of particular diagnoses, community characteristics and changes in adjustment over time.

Adaptation, Psychological↗
PubMed2003

Vital decisions.

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Deinstitutionalization↗