Lotte Huniche

Attitudes of COPD patients towards tele-rehabilitation: a cross-sector case study.

The aim of this paper is to describe patients’ attitudes towards tele-rehabilitation in the Danish TELEKAT (for Telehomecare, Chronic Patients and the Integrated Healthcare System) project, in order to better understand patients’ behavior when performing tele-rehabilitation activities in home surroundings. A total of 111 COPD patients were included in the study, and they were randomized into an intervention group (n = 60) and a control group (n = 51). However, a non-randomized design was used to analyze the qualitative perspectives of the patients’ attitudes towards tele-rehabilitation. From the intervention group, 22 COPD patients were selected for qualitative interviews and participant observation in their homes. The theoretical framework for this study is based on learning theory and the “communities of practice” approach inspired by Etienne Wenger. COPD patients exhibit four types of attitudes about their tele-rehabilitation: indifference, learning as part of situations in everyday life, feeling of security and motivation for performing physical training. The patients express the view that they circulate between these attitudes depending on their physical and emotional state as they perform their training. The COPD patients and healthcare professionals have created a community of tele-rehabilitation across sectors, exchanging experiences, stories and strategies for how to manage rehabilitation in home surroundings.

Men’s Experiences of Living With Osteoporosis: Focus Group Interviews

Osteoporotic fractures in men are an increasing public health problem. Male osteoporosis is often a low-prioritized issue, however. To examine men’s experiences with osteoporosis and how they handle osteoporosis in their everyday lives, the authors collected data from four focus groups with a total of 16 men aged 51 to 82 years diagnosed with osteoporosis. Critical psychology was used as a theoretical framework for the data analysis, which aimed to elicit information about the men’s daily lives. The men handled osteoporosis in different ways using different strategies. The authors found patterns that resonated with the social construction of hegemonic masculinity as displayed through the men’s fear of weakness and endurance through physical activity, as well as identity construction through active decision making in relation to health. Understanding and implementation of these issues is necessary in the development of preventive, screening, and monitoring strategies, as well as in the clinical care of men with osteoporosis.

Moral landscapes and everyday life in families with Huntington's disease: aligning ethnographic description and bioethics.

This article is concerned with understanding moral aspects of everyday life in families with Huntingtons Disease (HD). It draws on findings from an empirical research project in Denmark in 1998-2002 involving multi-sited ethnography to argue that medical genetics provides a particular framework for conducting life in an HD family. A framework that implies that being informed and making use of genetic services expresses greater moral responsibility than conducting life without drawing on these resources. The moral imperative of engagement in medical genetics is challenged here by two pieces of ethnographic analysis. The first concerns a person who, as described by a family member, does not engage with medical genetics but who brings to the fore other culturally legitimate concerns, priorities and areas of responsibility. The second figures a genetic counselling session where neither the knowledge nor the imagined solutions of medical genetics are as unproblematic and straightforward as might be thought. To assist our understanding of the moral aspects of living with severe familial disease, the ethnographic analysis is aligned with bioethical reflections that place the concrete concerns of those personally involved centre stage in the development of theoretical stances that aim to assist reflections in practice.

Learning from the voiceless

This article is concerned with understanding what is at stake in the everyday lives of family members facing Huntingtons Disease (HD). The methodological and analytical point of departure is German critical psychology, particularly the category of conduct of everyday life (Holzkamp, 1995; Dreier, 1999). Specifically, I address questions of accessing and understanding the conduct of everyday life of persons facing HD who are not visibly visibly active with respect to this circumstance. The question of access is not merely about getting in touch with persons who are not known to the research, professional and HD communities, but also about the consequences of establishing contact with persons who have not made an entry onto any of these public areanas themselves. The question of understanding is about developing an analysis from a first-person perspective on the personal conduct of everyday life that is not visibly active. The development of such an understanding has broader implications, not just for further research and health care practices, but importantly also for the prevailing moral and ethical demands made on persons living at risk of hereditary diseases.

Who and What Does Involvement Involve? A Multi-Sited Field Study of Involvement of Relatives in Danish Psychiatry.

This article gives an account of aspects of a multi-sited field study of involvement of relatives in Danish psychiatry. By following metaphors of involvement across three sites of the psychiatric system—a family site, a clinical site and a policy site—the first author (J.O.) investigated how, and on what grounds, involvement of relatives is perceived in Danish psychiatry. Paradoxically, the current understanding of involvement of relatives fails to take into consideration the perspectives of the relatives per se and families that were being studied. By analyzing involvement from a discourse theoretical perspective laid out by Ernesto Laclau and Chantal Mouffe, the aim of this study is to show how the dominant discourse about involvement at the political and clinical sites is constituted by understandings of mentally ill individuals and by political objectives of involvement. The analysis elucidates how a psycho-ideological discourse positions the mentally ill person as weak, incapable, and ineffective. By contrast, the supporting relative is positioned as a strong, capable, and effective co-therapist. Furthermore, the analysis considers how this dominant discourse of involvement is constituted by a broader discourse of neoliberalism and market orientation, which justifies involvement as a subtle institutionalization of social control. The article highlights that the role of the relative as a co-therapist may be contested by the families’ discourse, which emphasizes issues concerning the responsibility toward the mental health of the ill individual as well as toward the psychological milieu of the family.

Activity problems in everyday life – patients’ perspectives of hand osteoarthritis: “try imagining what it would be like having no hands”

Abstract Purpose: To explore first-person perspectives on activities and participation in everyday life among people with hand osteoarthritis (OA). Method: Semi-structured interviews were carried out with 5 men and 26 women of different ages living with hand OA. Supplemental data were collected via photo-interviews of two of the men and nine of the women. The analytical process was inspired by the interpretive phenomenological analysis and informed by the interpretive frameworks of critical psychology and social practice theory. Results: Empirical findings indicate that persons with hand OA experience activity problems and participation limitations in the conduct of everyday life. Activity problems were related to self-care, paid work, as well as leisure activities. The participants also reported employing different strategies attempting to overcome the challenges of their everyday lives in order to keep actively performing valued activities. They reported environmental support of utmost importance for these attempts. Social participation in networks was also reported to be affected by the participants’ activity problems. Conclusions: Arranging everyday life is complex and is carried out in structures of social practice. A supportive physical and social environment facilitates participation. The findings highlight the importance of paying attention to individual needs in rehabilitation processes. Implications for Rehabilitation Patients with hand osteoarthritis might have unmet needs for rehabilitative interventions targeting activity problems and participation restrictions related to work, self-care and leisure. Interventions targeting individual needs within fields such as ergonomics, adaptations of workplace environment, assistive technology and home modifications, may be relevant. Single living persons or people with sparse networks need special attention in clinical practice as they have fewer options for allocating difficult-to-perform tasks and therefore experience huge challenges in daily living.

The meaning of activity and participation in everyday life when living with hand osteoarthritis

Abstract Objective: The aim of this paper is, first, to advance the understanding of participation and its relationship to activity; second, to add to discussions or understandings of the ICF by contributing an empirically derived understanding of participation and its relationship to activity connected to the conduct of everyday life in people with hand osteoarthritis (hand OA). Methods: Semi-structured interviews were carried out with 31 men and women living with hand OA because existing research on this group and the challenges they encounter in their everyday life is sparse. The analytical process was inspired by Interpretive Phenomenological Analysis and informed by critical psychology and social practice theory as interpretive frameworks. Results: Our empirical findings indicate that persons with hand OA experience participation restrictions in their everyday lives and activity limitations as aspects of participation. This indicates that activity and participation are experienced as interrelated across social contexts. Conclusions: Participation in everyday life seems complex: what to participate in, how to participate and with whom seem of importance for subjective meaning-making. Implications are discussed in relation to methodology, the empirical findings, and clinical practice.

Photo-Interviewing to explore Everyday Occupation: Benefits and Issues

This article sheds light on the potential and the limitations of photo-interviewing for the study of human occupation and, in so doing, reflects the rapid growth in the use of participatory visual methods in a number of other disciplines. Drawing from a study that explored first person perspectives of participation in everyday occupations by people with osteoarthritis of the hand, the paper considers methodological issues related to using participatory visual methods. Participants were asked to generate photographs depicting aspects of their lived experiences, which were then used for photo-interviewing. Empirical data are presented that emphasize the productiveness of participants’ verbal interpretation of photographs. Photo-interviewing was found to engage participants in reflections on everyday life to a greater extent than conventional interviews and proved to be particularly well suited to generating knowledge of embodied everyday life experiences. Despite the fact that there were a number of methodological issues that require close consideration, when used appropriately visual research methodologies may help researchers to access rich information about everyday living that may otherwise be lost in conventional interviewing.

Ethical challenges assessed in the clinical ethics Committee of Psychiatry in the region of Southern Denmark in 2010-2015: A qualitative content analyses

BackgroundThe aim of this article is to give more insight into what ethical challenges clinicians in mental healthcare experience and discuss with a Clinical Ethics Committee in psychiatry in the Region of Southern Denmark. Ethical considerations are an important part of the daily decision-making processes and thereby for the quality of care in mental healthcare. However, such ethical challenges have been given little systematic attention – both in research and in practices.MethodsA qualitative content analysis of 55 written case-reports from the Clinical Ethics Committee. The Committee offers clinicians in mental healthcare structured ethical analyses of ethical challenges and makes a thorough written case-report.ResultsThe ethical challenges are grouped into three overarching topics: 1. Clinicians and their relation to patients and relatives. 2. Clinicians and institutional aspects of mental healthcare 3. Clinicians and mental healthcare in a wider social context. Through presentation of illustrative examples the complexity of daily clinical life in mental healthcare becomes evident, as well as typical interests, values and arguments.ConclusionsThis qualitative study indicates that difficult ethical challenges are an inherent part of mental healthcare that requires time, space and competence to be dealt with adequately.

Development of non-invasive ventilation treatment practice for patients with chronic obstructive pulmonary disease: Results from a participatory research project

Objectives: Non-invasive ventilation treatment for patients with acute exacerbation of chronic obstructive pulmonary disease is well documented. Communication with patients during treatment is inhibited because of the mask, the noise from the machine and patient distress. Assessing life expectancy and identifying end-stage chronic obstructive pulmonary disease posed difficulties and caused doubts concerning initiation and continuation of non-invasive ventilation as life-sustaining treatment. Health professionals expressed a need for knowledge of patients’ perspectives and attitude towards non-invasive ventilation. Methods: The study adheres to principles of Critical psychological practice research. Data on patients’ and health professionals’ perspectives were obtained from observations from the ward and semi-structured interviews with 16 patients. A group of health professionals was set up to form a co-researcher group. The co-researcher group described and analysed treatment practice at the department, drawing on research literature, results from observations and patients’ interviews. Results: Interviews revealed that 15 patients evaluated treatment with non-invasive ventilation positively, although 13 had experienced fear and 14 discomfort during treatment. The co-researcher group described health professionals’ perspectives and analysed treatment practice based on data from patients’ perspectives developing new management strategies in clinical practice with non-invasive ventilation. Conclusion: The participatory approach enabled continuous and complementary development of knowledge and treatment practice. The investigation of patient perspectives was particularly productive in qualifying cooperation among health professionals. The study resulted in preparing, and implementing, new clinical strategies.