Tuula Wallsten

Family Burden and Relatives' Participation in Psychiatric Care: Are the Patient's Diagnosis and the Relation to the Patient of Importance?

Background: Studies that differentiate among diagnoses have detected divergent results in the experience of family burden. Aim: This study aimed to investigate differences in family burden and participation in care between relatives from subgroups of psychoses, affective disorders and ‘other diagnoses’, and between different subgroups of relatives. Method: In a Swedish longitudinal study performed in 1986, 1991 and 1997, 455 close relatives of both committed and voluntarily admitted patients were interviewed concerning different aspects of their burden, need for support and participation in the actual care situation. Results: Relatives showed burdens in several of the aspects measured. In only one aspect of the investigated burden items was a difference found between different diagnostic subgroups. The relatives of patients with affective disorder more often had to give up leisure time. However, spouses showed more burdens and more often experienced sufficient participation in the patients treatment than other subgroups while siblings more seldom experienced burdens and more seldom felt that their own needs for support had been met by the psychiatric services. Within each diagnostic subgroup there were differences between subgroups of relatives. Conclusion: Being a close relative, and living together with a severely mentally ill person in an acute situation, is one factor of importance for experiencing burden and participation in care, contradicting the conventional wisdom which differentiates between diagnoses.

Coercion in psychiatric care – patients’ and relatives’ experiences from four swedish psychiatric services

The aim of this study was to explore possible regional differences in the use of coercion in psychiatric care as experienced by patients and relatives. At four psychiatric care settings in different parts of Sweden, 138 committed and 144 voluntarily admitted patients were interviewed at admission using the Nordic Admission Interview. At discharge or, if the care episode was still ongoing, after 3 weeks of care, a follow-up patient interview and an interview with 162 relatives of these patients took place. In one of the centers, where involuntarily admitted patients were treated without locking the doors of the wards, the patients reported less coercion at admission than in the other three centers. Regarding the patients’ reports of the use of coercive measures, personal treatment and outcome of care, and concerning the relatives’ experiences, few differences were found between centers among committed and voluntarily admitted patients, respectively. Coercion in psychiatric care, as reported by patients and relatives, was not always legally based, and many of the patients reported they felt violated during the admission process. Only a minority of patients and relatives reported participation in treatment and care planning, as regulated by law. Still, a majority of both committed and voluntarily admitted patients reported they had been well treated by the personnel at admission as well as during the stay at the ward, and that they had been improved in their mental health after the psychiatric care episode.

Accumulated coercion and short-term outcome of inpatient psychiatric care

BackgroundThe knowledge of the impact of coercion on psychiatric treatment outcome is limited. Multiple measures of coercion have been recommended. The aim of the study was to examine the impact of accumulated coercive incidents on short-term outcome of inpatient psychiatric careMethods233 involuntarily and voluntarily admitted patients were interviewed within five days of admission and at discharge or after maximum three weeks of care. Coercion was measured as number of coercive incidents, i.e. subjectively reported and in the medical files recorded coercive incidents, including legal status and perceived coercion at admission, and recorded and reported coercive measures during treatment. Outcome was measured both as subjective improvement of mental health and as improvement in professionally assessed functioning according to GAF. Logistic regression analyses were performed with patient characteristics and coercive incidents as independent and the two outcome measures as dependent variablesResultsNumber of coercive incidents did not predict subjective or assessed improvement. Patients having other diagnoses than psychoses or mood disorders were less likely to be subjectively improved, while a low GAF at admission predicted an improvement in GAF scoresConclusionThe results indicate that subjectively and professionally assessed mental health short-term outcome of acute psychiatric hospitalisation are not predicted by the amount of subjectively and recorded coercive incidents. Further studies are needed to examine the short- and long-term effects of coercive interventions in psychiatric care.

Perception of coercion: A pilot study using the Swedish version of the Admission Experience Scale

The Admission Experience Scale (AES) has been translated into Swedish and tested in a small pilot study comprising 20 patients. As some difficulties were found, the AES was complemented with a structured clinical interview. The modified scale was used on 75 patients, voluntarily or involuntarily admitted to a psychiatric clinic. The mean score of the AES was 4.2±3.8, with a higher total score for involuntarily committed patients. A principal component analysis was performed, and four factors with an eigen value above 1.0 were found. The four factors cover different aspects of the experience of admission. Three individual items dealing with force and threat showed a significant difference between voluntarily and involuntarily admitted patients.

Patients’ and next-of-kins’ attitudes towards compulsory psychiatric care

The introduction of a new Civil Commitment Act in Sweden in 1992 involved a shift of emphasis from medical to judicial authority. Little is known about general patient attitudes to compulsory care. The aim of the study was to study possible differences in attitudes, before and after the mental health law reform, among involuntarily and voluntarily admitted patients and their next-of-kins towards involuntary psychiatric admission. Samples of 84 committed and 84 voluntarily admitted patients in 1991 and 118 committed and 117 voluntarily admitted patients in 1997–99 were interviewed within 5 days from admission and at discharge, or after 3 weeks of care. Samples of 64 next-of-kins to the committed patients and 69 next-of-kins to the voluntarily admitted patients in 1991, and 73 and 89 next-of-kins, respectively, in 1997–99 were interviewed approximately 1 month after the admission. Few changes in attitudes were found between the two study occasions. A majority of all patients stated that it should be possible to compulsorily admit patients, and a great majority of the patients and the next-of kins stated that decisions regarding compulsory admission should be taken by doctors. Most patients and next-of-kins regarded decisions about involuntary psychiatric care mainly as a medical matter. Strong support for coercion in order to protect the patient and others was found among next-of-kins. The law reform was not reflected in attitudinal differences.

Sensory Clusters of Adults With and Without Autism Spectrum Conditions

We identified clusters of atypical sensory functioning adults with ASC by hierarchical cluster analysis. A new scale for commonly self-reported sensory reactivity was used as a measure. In a low frequency group (n = 37), all subscale scores were relatively low, in particular atypical sensory/motor reactivity. In the intermediate group (n = 17) hyperreactivity, sensory interests and sensory/motor issues were significantly elevated in relation to the first group, but not hyporeactivity. In a high frequency subgroup (n = 17) all subscale scores were significantly elevated and co-occurrence of hyper- and hyporeactivity was evident. In a population sample, a cluster of low scorers (n = 136) and high scorers relative to the other cluster (n = 26) was found. Identification of atypical sensory reactivity is important for targeting support.

The diagnostic accuracy of questions about past experiences of being mechanically restrained in a population of psychiatric patients

Information about stressful life experiences obtained from patients during diagnostic interviews is an important foundation for clinical decision making. In this study self-reports from 115 committed psychiatric patients of experiences of mechanical restraint were compared with medical records. The sensitivity of patient self-reports was 73% (11/15) and the specificity was 92% (92/100). No clear relationship between psychiatric symptoms and reliability of self-reports was identified. The results highlight the subjective qualities of narratives about past experiences.

To be present, share and nurture: a lifeworld phenomenological study of relatives’ participation in the suicidal person’s recovery

ABSTRACT In today’s health care, participation is acknowledged as important. However, there is limited research on how relatives of patients at risk of suicide experience their opportunities to participate in care during periods when their close ones are subject to inpatient care. The aim of this study was to describe the phenomenon of participation, as experienced by relatives of persons who are subject to inpatient psychiatric care due to a risk of suicide. The study was conducted through a reflective lifeworld research (RLR) approach, based on phenomenological philosophy. Eight relatives of patients receiving care from professionals in a psychiatric specialist health care context in Sweden participated in phenomenon-oriented interviews. Data were analysed to elucidate a meaning structure of the phenomenon. The findings show that the phenomenon of participation was more associated with patients’ recovery processes than with the caring process, and means “being actively involved in a process in which the person regains the desire to live”. The meaning of participation is further described by its meaning constituents: struggling for being able to be present for the person at risk of suicide, being able to share everyday life, and nurturing sources for vitality. These insights into the meaning of participation highlight the importance of allowing supportive relatives to be a part of the patient’s life, while the person is cared for in an inpatient hospital setting. Thus, participation enables relatives to be acknowledged as resourceful human beings in the patient’s recovery process, and thereby facilitates a sense of being able to manage and share life itself together with the person. This means that mental health nurses need to recognize individual variations of relatives’ participation processes, and take on the responsibility of acknowledging relatives’ lifeworlds.

Philosophical Grounding in a Reflective Lifeworld Research Approach : Where Is the Place for Description vs. Interpretation?

How do we understand time and change? Five approaches to longitudinal qualitative research in nursingAbstracts, Oral Presentations for Qualitative Methods Conference, May 2016s, Oral Presentations for Qualitative Methods Conference, May 2016 Doing Collaborative Research: The Good, the Bad, and the Politics Simon Adam, University of Toronto While the importance of collaborative research and collaborative discovery cannot be understated, what accompanies such work can be a myriad of difficulties for the researcher and a number of barriers for ‘‘the researched.’’ What are the rich possibilities of discovery that can be achieved by doing collaborative research? What are some inherent barriers in collaborative research work? How can an ethical review process become an institutionalized political process? How do institutional political interests trump those of discovery, knowledge production, and progress? In this presentation, I offer some answers to these questions and pose further ones for critical thought. I report on a current research project—an institutional ethnography—which involves several educational institutions (and at one point, a hospital). The very obstacles—the institutional ‘‘red tape’’—and its implications for doing collaborative research are the focus of this presentation. The Transaction ‘‘X-Ray’’: Refreshing the Parts Other Peers Cannot Reach! Alan Aitken, Glasgow Caledonian University Robert Paton, Adam Smith Business School, University of Glasgow Penetrating potentially sensitive areas for interviewees and, subsequently, aggregating interview outputs in a manner that avoids the effects of decontextulisation and decomposition are issues commonly faced by qualitative researchers. This paper, whose title is unashamedly borrowed from a long-running UK beer advert, presents a research method that seeks to overcome these issues. Using a web-based contemporary update of DiaryDiary Interview techniques, the researchers were able to penetrate the commercial sensitivity associated with the longitudinal study of presales interactions between business-tobusiness (B2B) buyers and sellers. The research methodology develops well-established techniques associated with qualitative content analysis to examine individual interactions and subsequently utilises an innovative graphical method of aggregation to present a nuanced view of groups of transactions that share common characteristics. The resulting transaction ‘‘X-rays’’ are used to explore emergent themes by comparing and contrasting X-rays across data sets. Although developed within the specific context of B2B negotiation, the authors contend that the methodology has significant crossdiscipline potential. Applications suited to the method may include any context in which researchers seek to develop a deeper and more complete understanding of the interviewee than can be achieved by comparable techniques. The methodology is particularly suited to situations in which interviewees, although happy to participate in the interview process, may not respond to direct questioning for reasons of personal sensitivity. In this regard, presenting aggregated results in the form of transaction ‘‘X-rays’’ further gives assurance of inter-Observational methods involve watching and recording what individuals do and say in particular settings and have been used frequently within the social sciences, in different ways and across varying contexts. They are valued for their potential to gain insights into ‘‘natural’’ behaviours through creating an environment closer to everyday life than a face-to-face interview, allowing observation of behaviours similar to those that may naturally be exhibited by participants. A number of studies exploring online health information seeking have incorporated such methods through the use of computer applications that allow recording and thus observation of online information searching behaviours in real time. However, few of these have included researchers’ reflections on carrying out this kind of research. This presentation will attempt to fill this gap by drawing on experiences of carrying out an exploratory qualitative study using paired interview and observational methods which explored how young people (aged 16–19) search for and evaluate online sexual health information. This presentation will focus on the use of observational methods as a way of grounding insights in ‘‘real life’’ situations and the opportunities and challenges with using this type of methodology, with a particular focus on the concept of the ‘‘absent’’ researcher and its effect on participants’ behaviours. This presentation will explore firsthand experiences of applying these methods, describing and reflecting on the practical, relational, and ethical concerns that arose and discussing ways to manage and respond to these.Abstracts, Oral Presentations for Qualitative Methods Conference, May 2016s, Oral Presentations for Qualitative Methods Conference, May 2016 Doing Collaborative Research: The Good, the Bad, and the Politics Simon Adam, University of Toronto While the importance of collaborative research and collaborative discovery cannot be understated, what accompanies such work can be a myriad of difficulties for the researcher and a number of barriers for ‘‘the researched.’’ What are the rich possibilities of discovery that can be achieved by doing collaborative research? What are some inherent barriers in collaborative research work? How can an ethical review process become an institutionalized political process? How do institutional political interests trump those of discovery, knowledge production, and progress? In this presentation, I offer some answers to these questions and pose further ones for critical thought. I report on a current research project—an institutional ethnography—which involves several educational institutions (and at one point, a hospital). The very obstacles—the institutional ‘‘red tape’’—and its implications for doing collaborative research are the focus of this presentation. The Transaction ‘‘X-Ray’’: Refreshing the Parts Other Peers Cannot Reach! Alan Aitken, Glasgow Caledonian University Robert Paton, Adam Smith Business School, University of Glasgow Penetrating potentially sensitive areas for interviewees and, subsequently, aggregating interview outputs in a manner that avoids the effects of decontextulisation and decomposition are issues commonly faced by qualitative researchers. This paper, whose title is unashamedly borrowed from a long-running UK beer advert, presents a research method that seeks to overcome these issues. Using a web-based contemporary update of DiaryDiary Interview techniques, the researchers were able to penetrate the commercial sensitivity associated with the longitudinal study of presales interactions between business-tobusiness (B2B) buyers and sellers. The research methodology develops well-established techniques associated with qualitative content analysis to examine individual interactions and subsequently utilises an innovative graphical method of aggregation to present a nuanced view of groups of transactions that share common characteristics. The resulting transaction ‘‘X-rays’’ are used to explore emergent themes by comparing and contrasting X-rays across data sets. Although developed within the specific context of B2B negotiation, the authors contend that the methodology has significant crossdiscipline potential. Applications suited to the method may include any context in which researchers seek to develop a deeper and more complete understanding of the interviewee than can be achieved by comparable techniques. The methodology is particularly suited to situations in which interviewees, although happy to participate in the interview process, may not respond to direct questioning for reasons of personal sensitivity. In this regard, presenting aggregated results in the form of transaction ‘‘X-rays’’ further gives assurance of inter-Abstract of the oral presentation given at the qualitative methods conferece (QM) 1 - 3 May 2016, Glasgow, UK.Background: Governments around the world are increasingly emphasising the need for health policy decisions to be informed by research evidence. Similarly evidence-based practice is an interdisciplinary approach to clinical practice that has been gaining ground since the early 1990s in which clinical decisions are based on the best available evidence with practitioner expert involvement. However, empirical studies continue to highlight gaps between policy, practice and the available evidence. One barrier often highlighted is the existence of communicative gaps between academics and decision makers, suggesting that people find it difficult to assess the credibility of research evidence so often rely on a host of non academic sources to shape their ideas on policy debates and decisions as a result. In this respect, professionals find common ground with public consumers of evidence who also often report challenges in interpreting the credibility of the growing expanse of academic research they read and hear about in the popular press. Objective: The aim of this study is to help bridge the communicative gap between academics and evidence users by developing an online intervention which explains scientific concepts and processes so that a person can ask, find, or determine answers to questions about research evidence and draw conclusions about the validity of research studies. Methods: The ‘Understanding Health Research’ tool was developed in three stages. Firstly, a scoping phase was conducted in which a literature review of the currently available tools for appraising research was carried out, followed by 17 interviews and three workshops with a wide range of organisations and people who regularly produce, use, or assess health research as part of their job. The second phase was concerned with developing and building the tool with a web designer and population health scientist, we are currently in the third stage in which we are testing the tool with a wide range of users. This presentation is to demonstrate the utility of the web based e-tool which is due to be launched later in 2014. []Photo-elicitation is a technique involving the use of photographs in an interview setting and was selected as a key component of a Nominal Group Technique (NGT). The NGT consists of four key stages to establish group consensus: silent generation of ideas; sharing of ideas; group discussion and individual voting and ranking. The application of photo-elicitation in this doctoral study used a suite of pre-existing images with five nominal groups of student nurses to explore their perceptions of dignity. The decision to incorporate photo-elicitation into the NGT was guided by the complex nature of the concept of dignity and the need to bridge the gap between the participants’ perceptions and what they could articulate. The literature suggests that photo-elicitation can help overcome any perceived need to say the ‘right’ thing and can evoke a more authentic and spontaneous response by connecting with the unconscious. Furthermore, images are thought to stimulate broader discussion and reduce the awkwardness of the research setting. This paper will outline the practical application of photo-elicitation within NGT. In this study, participants were invited to select an image that captured something of the meaning of dignity and to explain their choice in writing during the silent generation stage. Images were available from the outset and this was found to enhance participant engagement. In utilising photo-elicitation in NGT, participants were enabled to generate rich responses to a complex concept.Philosophical Grounding in a Reflective Lifeworld Research Approach : Where Is the Place for Description vs. Interpretation?The interpretive approach as a means of understanding the misunderstood. People’s experiences of health and illness are important areas of health research and practice. The interpretive process, and more significantly the biographical approach (Denzin, 1989) is an approach in which there is a focus on personal epiphanies which shape and reflect the stories people tell of their experiences. Dolby-Stahl (1985) contends stories of personal experience sit within the genre of folklore and that the reading of such stories must take into account the social, cultural and historical contexts which influence and give meaning to experience. This presentation describes a folkloristic biographical method which was used to advance an understanding of a poorly understood and complex phenomenon. Using the example of women genetically predisposed to developing breast/ovarian cancer who refused risk reducing surgery, this innovative methodological approach allowed the stories of high risk women to be interpreted from a number of different perspectives as no single interpretation is able to create meaning. This approach was useful in understanding the range of influences which impact upon health behaviours. Giving voice to women at high risk of developing cancer who refuse conventional treatment can be considered a collaborative approach which grounds the creation of new knowledge in real life experience. The weaknesses of employing traditional ways of measuring and investigating reasons for saying no to risk reducing surgery in this group of women are outlined, and used to develop the strengths of the biographical method.

Patients' experiences of coercive treatment and coercive measures in psychiatric care

Results Forced medication was reported by 48% of the committed and by 3% of the voluntarily admitted patients. Ninetyfive % of the committed patients thought it was a negative experience when it happened and 89% thought it was wrong. At discharge or after three 3 weeks of care 73% of the committed patients thought it was wrong. Nineteen patients reported mechanical restraint, all of them committed. Eighty-four percent of them thought it was a negative experience and 74% thought it was wrong when it happened. At discharge or after 3 weeks of care 68% thought it was wrong when it happened. Seclusion was reported by seven committed and one voluntarily admitted patient. Of those committed patients five patients thought it was a negative experience and wrong. Conclusion A majority of those who reported coercive treatment and coercive measures during inpatient psychiatric care thought it was wrong when it happened and did not change their attitude at discharge or after 3 weeks of care. Predictors associated to these results will be analyzed. from WPA Thematic Conference. Coercive Treatment in Psychiatry: A Comprehensive Review Dresden, Germany. 6–8 June 2007