Elisabeth Olin

Oral health problems and support as experienced by people with severe mental illness living in community-based subsidised housing – a qualitative study

The purpose of this study was to explore how persons with severe mental illness (SMI) experience oral health problems (especially dry mouth), and weigh the support they received in this regard from professionals and staff at community-based congregate housing through a controlled intervention programme. Oral health problems and dry mouth are found in association with apathy and indifference, cognitive deficits, and long-term medication with psycho-pharmacological drugs. The present study describes the results from one part of a longitudinal intervention programme, which sought effective ways of mitigating dry mouth through increased support with oral health problems. This part consists of 67 informal interviews with ten participants in two community-based urban housing projects between November 2006 and June 2007, with a follow-up session in December 2007. Content analysis of the results yielded five categories: The shame of having poor dental health, history of dental care, experiences of self-care, handling of oral health problems, and experiences of staff support. Poor oral health caused shame and limited participation in social activities. Participants avoided oral health issues by such circumventions as denial of a tooth ache or dental infections, or postponing oral problems with the hope that they would die away. Offers of support were frequently resisted because of unsatisfactory prior encounters with dental professionals and staff. Our findings suggest that self-care needs to be facilitated in an unobtrusive manner with minimal staff involvement, and clients should be referred to dental care providers experienced in treating people with SMI.

A need for “good eyes”: Experiences told by patients diagnosed with psychosis

This study highlights experiences of psychiatric care described by patients diagnosed with psychosis. The aim was to investigate how patients, based on earlier experiences, described their wishes and needs regarding the psychiatric care system. Data comprised material from four focus groups; analysis used an inductive thematic approach. Relationships with staff emerged as a recurring theme. During periods of psychosis, patients needed staff to act as “parental figures,” providing care, safety, and help in dealing with overwhelming stimulation from the outside word. In the ensuing struggle to devise a livable life, the need for relationships recurred. In this phase, staff needed to give their time, provide support through information, and mirror the patients capacity and hope. The patients trials were described as threatened by a lack of continuity and non-listening professionals. It was important for staff to listen and understand, and to see and respect the patients’ viewpoints.

On the outskirts of normality: Young adults with disabilities, their belonging and strategies

Abstract During the last decades, the living conditions for young people with disabilities have changed dramatically in Sweden, as well as in other parts of the Western world. The boundaries between what is considered normal as opposed to different have become less clear as a result of these changes. This has been followed by new problems regarding integration and changing patterns of marginalization. The aim of this study was to gain a deeper understanding of the ways in which young adults’ social identity is shaped by their dual belongings: to the category of individuals with disabilities as well as to mainstream society. In- depth interviews were carried out with 15 young adults with mental disabilities and mild intellectual disabilities occasionally combined with various forms of social problems. The analysis focused on the ways in which the young adults related to what they describe as normal and different as well as their strategies for navigating between them. The data was subsequently divided into three categories: Pragmatic Navigators, Critical Challengers, and Misunderstood Rebels, which reflect the ways in which the respondents describe themselves and the perspective they have developed to manage their existence.

A matter of love and labour? Parents working as personal assistants for their adult disabled children

The overall aim was to explore experiences of parents working as personal assistants (PAs) for their adult disabled children, with a focus on the roles of these parents and the intersection between formal and informal support. In 1994, the right to personal assistance was introduced in Sweden. The intention was to promote disabled people’s independence and participation in society. Many users combine personal assistance from family members with non-family assistance. Employing parents of adult children as PAs has been depicted as a barrier to independence and adulthood, but can also be seen as lessening potential difficulties of having ‘strangers’ deliver support in the private sphere. Welfare policies and social work practices have a major impact on the lives of families with disabled children. Fourteen parents working as PAs for their adult children were interviewed. For the parents, pursuing an employee role outside the home was very difficult to combine with the caring role. Shortcomings in the formal support system and battles with social services to receive adequate and appropriate support were experienced as burdensome. Families with disabled members were forced into very traditional family patterns and found themselves interwoven into a complex fabric of emotional and economic interdependence.

Common areas in group homes: arenas for different interests?

In Sweden, more than 5000 people with intellectual disabilities have moved from institutions into new types of integrated housing areas during the last decade. In order to safeguard the residents’ private lives, the role of the private sphere has been exaggerated and, subsequently, the importance of other more collective spheres has been underrated. This article examines the function, the use and the staffs’ ideas of common areas in various kinds of group accommodations in Sweden. The data consist of qualitative interviews with 34 individuals with intellectual disabilities, interviews with members of staff at the group homes and participant observations. The analysis focuses on the ways in which placement, architecture and decoration of the common areas as well as the staffs’ ideas and approaches influence the residents’ everyday lives. Three types of common areas were consequently identified: the restrictive, the familiar and the neutral room.

The clinical gaze – ascribed gender(ed) identities in a mental health service context

ABSTRACTThis article focuses on gender(ed) ascribed identities of service users in a mental health service context in Sweden. The empirical data were collected through observations of weekly team conferences. The examples can be described as ‘frozen images’ or ideal types in the sense that they illustrate the different ways service providers describe the service users’ problems at a certain time in a certain context. This article illustrates that the ‘the gaze’ of the service providers was value-laden, making moral judgements tied to the notion of responsibility. However, the same kind of behaviour or diagnoses can be accounted for in different ways and hence lead to different outcomes for the service user, which illustrates ‘severe mental illness’ as a stretchable phenomenon. The team discussions also mirror the service users’ strategies to handle professional and institutional power, that is, challenge the power position of professionals, with regard to the construction of service users as passive recip...

Effects of the Two-Way Communication Checklist (2-COM): A one-year cluster randomized study in a group of severely mentally ill persons

Background: In a health-care service with the emphasis on improvement related to functioning and well-being, the communication process between patient and professionals is essential. There is a lack of research on this matter. Aim: The aim was to investigate, in a group of severely mentally ill persons, whether the use of a simple communication tool could influence the sense of empowerment, satisfaction with care, therapeutic alliance and unmet needs. Method: The study had a cluster randomized design. The intervention was a communication tool (2-COM) applied in two teams during one year. In a comparison group of two other teams, the treatment was as usual. At baseline, after six months, and after one year, assessments were made. Results: After one year the 2-COM groups seemed to have a larger reduction in unmet needs compared to the treatment-as-usual group. However, there were large problems with attrition in the study, and it was not possible to draw relevant conclusions. Conclusions: The methodological problems were substantial, and the study may be considered as a pilot study. In a main study the researchers ought to take control over the selection of patients on the basis of the experiences from this study.

Privacy, meetings and rejections – a qualitative study of everyday life among young persons with psychiatric disabilities

Abstract This study explores how young persons with psychiatric disabilities experience everyday life according to places, social relationships and activities, using semi-structured, in-depth interviews and site-maps. Qualitative content analysis was chosen for analyzing the interviews in comparison with information from the site-maps. Respondents spent most of their time in the private arena, in their own homes, and the homes of their parents. Many also spent time in the semi-private arena, in places such as day centres and care settings. Some also spent time in the public arena, especially the neighbourhood. They experienced all three arenas both positively and negatively and associated each one with self-determination and community, as well as with demands and solitude. Young peoples activities and experiences were formed by the various arenas and by their social relationships, as well as by specific strategies for handling different situations.

Personal assistance from family members as an unwanted situation, an optimal solution or an additional good? The Swedish example

Abstract The aim of this article was to explore how users experienced and managed personal assistance from family members who are employed as personal assistants. Seventeen users of personal assistance provided by one or several family members, often in combination with external personal assistants, participated. Thematic qualitative interviews were conducted. The participants were between 19 and 58 years old, and were living with various impairments: mobility, sensory and/or learning disabilities. The results showed that personal assistance from family members could both promote and be a barrier to disabled people’s control over their own lives and participation in society. It became evident that the situation could have both advantages and disadvantages for both parties, which puts the focus on the interdependency between the participants and their family assistants. However, the results also points to a potential risk that the welfare state (re)passes its responsibilities back on to disabled people and their families.

Agreement between ratings from self-rating scales and assessments by staff concerning a group of ‘severely mentally ill’ people

Previous research shows generally low agreement concerning self-rating scales and assessments by staff regarding people considered to be ‘severely mentally ill’. The aims of this study were to measure the level of agreement between patients’ self-rating and key workers’ assessments, and to explore some of the factors that influence level of agreement. The results of questionnaires from 49 severely mentally ill persons concerning needs, therapeutic alliance, and self-esteem were compared with key workers’ estimates. Agreement was found regarding the number of unmet needs. Concerning met needs, therapeutic alliance and self-esteem, no significant agreements were found, however, for met needs, therapeutic alliance or self-esteem.