1. |
- Andersson, Christina, 1955, et al.
(author)
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Capability to make well‑founded decisions: an interview study of people with experience of sickness absence who have common mental disorders
- 2022
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In: BMC Public Health. - : Springer Science and Business Media LLC. - 1471-2458. ; 22:1
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Journal article (peer-reviewed)abstract
- Background Sickness absence and rehabilitation processes can be challenging for an individual. At a time of generally reduced capacity, the individual must comprehend and navigate through several options. The aim of this study was to investigate the prerequisites for support, knowledge and information related to decision making experienced by people on sickness absence due to common mental disorders. Methods A qualitative explorative approach was used. Face-to-face interviews took place with 11 sick-listed individuals with common mental disorders. Patients were recruited from different sources in the western part of Sweden, such as primary health care centres, patient organizations and via social media. Data analysis was performed using manifest content analysis, meaning that the analysis was kept close to the original text, and on a low level of interpretation and abstraction. Results The analysis revealed three themes that described experiences of decision making during the sick leave and rehabilitation process: Ambiguous roles challenge possibilities for moving on; Uncertain knowledge base weakens self-management; and Perceived barriers and enablers for ending sick leave. Conclusions Our findings suggest that alternatives need to be found that address sickness absence and rehabilitation processes from a complex perspective. Collaboration between stakeholders as well as shared decision making should be considered when the time for return to work is discussed with sick-listed individuals. Other factors in the context of the individual must also be considered. Current knowledge on strategies to improve health/well-being while being in the sick leave process need to be elaborated, communicated and adapted to each individuals’ unique situation, including clarifying rights, obligations and opportunities during the sick-leave process.
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2. |
- Danielsson, Louise, 1979, et al.
(author)
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Strategies to keep working among workers with common mental disorders – a grounded theory study
- 2019
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In: Disability and Rehabilitation. - : Informa UK Limited. - 0963-8288 .- 1464-5165. ; 41:7, s. 786-795
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Journal article (peer-reviewed)abstract
- © 2017 Informa UK Limited, trading as Taylor & Francis Group Purpose: Most people with common mental disorders (CMDs) are employed and working, but few studies have looked into how they manage their jobs while ill. This study explores workers’ experiences of strategies to keep working while suffering from CMDs. Methods: In this grounded theory study, we interviewed 19 women and eight men with depression or anxiety disorders. They were 19–65years old and had different occupations. Constant comparison method was used in the analysis. Results: We identified a core pattern in the depressed and anxious workers’ attempts to sustain their capacities, defined as Managing work space. The core pattern comprised four categories describing different cognitive, behavioral, and social strategies. The categories relate to a process of sustainability. Two categories reflected more reactive and temporary strategies, occurring mainly in the onset phase of illness: Forcing the work role and Warding off work strain. The third category, Recuperating from work, reflected strategies during both onset and recovery phases. The fourth category, Reflexive adaptation, was present mainly in the recovery phase and involved reflective strategies interpreted as more sustainable over time. Conclusions: The results can deepen understanding among rehabilitation professionals about different work-related strategies in depressed and anxious workers. Increased awareness of the meaning and characteristics of strategies can inform a person-oriented approach in rehabilitation. The knowledge can be used in clinical encounters to reflect together with the patient, exploring present options and introducing modifications to their particular work and life context.Implications for rehabilitationSelf-managed work functioning in common mental disorders involves diverse strategies.Strategies interpreted as sustainable over time, seem to be reflective in the sense that the worker consciously applies and adapts the strategies. However, at the onset of illness, such reflection is difficult to develop as the worker might not want to realize their reduced functioning.Rehabilitation professionals’ awareness of different strategies can facilitate a person-centered approach and understanding of the vocational rehabilitation process.
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3. |
- Elf, Mikael, 1959, et al.
(author)
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An investigation of intended and real use of a research web health portal and its implementation
- 2014
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In: Electronic Journal of Health Informatics. - Melbourne, Victoria : Health Informatics Society of Australia (H I S A) Ltd.. - 1446-4381. ; 8:1
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Journal article (peer-reviewed)abstract
- Participatory design (PD) projects involve prospective users as co-designers in a process where the design object emerges through several iterations. However, the result of such a process can only partly anticipate how the future real users will use the designed object. For this reason, its actual use needs to be investigated. The present study investigated the relationship between intended use and real use in two web-based health support systems in order to explore the conditions for redesign. The dependency between intended use and real use was found to be weak. Rather, the real use was dependent on 1) the context of use and 2) the needs or interest of the users. We conclude that redesign should be based on continuous use of web metrics collected in natural settings and by involving users on a recurring basis. While a web health portal must have an agenda it is important to adapt thing design to use design, why redesign in essence will become an adaptation to user needs.©Copyright of articles originally published in www.eJHI.net under the Creative Commons Attribution 3.0 License is retained by the authors.
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4. |
- Elf, Mikael, 1959, et al.
(author)
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Design of Web-based Support Systems in Less Structured Contexts - the Case of Young Carers.
- 2011
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In: Medicine 2.0 Congress, Sept 17-18 2011, Stanford University, US..
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Conference paper (peer-reviewed)abstract
- Background It has been suggested that at least 4% in a given population of young people are young carers (YC), providing substantial support to diseased family members. Many of them have little or no help from society, partly due to societal neglect of this group and partly due to barriers for help seeking, such as shame, stigma and distrust in health and social care resources (HSCR). The group addressed in this abstract, YCs aged 16-25 and supporting someone with mental illness, may find those barriers even more constricting. Research on web-based support for this group are limited, although web-based support may have a prominent role to play in reaching and supporting them. However, web-based support systems (WBSS) are often built around an educational part and a peer-support part, while a number of recent studies of ICT-support to homeless people, at-risk teens and YCs point to additional needs not addressed in such supports. A common factor among these groups seems to be a lack of support in their life context and at the same time barriers to reach important HSCRs. Our objective is to outline a model for web-based support aiming to increase YCs' opportunities and willingness to overcome barriers in reaching HSCRs that they need. Methods Data from two qualitative studies has been used. Study one was based on interview data (N=12) and explored YCs' needs in their care situation and in relation to a hypothesized WBSS. Data was transcribed and analyzed with content analysis. Study 2 explored YCs' views (N=8) of a WBSS when acting as co-designers in a participatory design (PD) process. Five consecutive design meetings were video recorded and analyzed with content analysis. Results 1) In addition to needs of knowledge (e.g. for understanding mental illness) and needs for communication (e.g. with peers having similar experiences), YCs wanted the opportunity to meet peers in real life and to get “real-life” support. Important real-life support could be e.g. acute relief in the care situation and structured family interventions. Young carers also expressed need for greater commitment from HSCRs. 2) Young carers emphasized human qualities of the WBSS (personification), like competence and a serious attitude. They indicated the importance of commitment and sensitivity in any action on the WBSS. The website was viewed not only as a source for information, knowledge and exchange, but also as something to relate to and trust. Conclusions Localization, mediation and personification may be important properties of a WBSS aimed at YCs. A locally anchored WBSS could facilitate real-life connections between YCs (observing security issues) and would be a prerequisite in helping YCs to become familiar with HSCRs in their place of living. A dedicated staff can build relations to and explore local HSCRs and mediate these experiences on the WBSS. A personified WBSS may offer not only increased visibility, transparency and familiarity of HSCRs, but also trust and support for YCs to overcome barriers in reaching HSCRs.
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5. |
- Elf, Mikael, 1959
(author)
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PERSPECTIVES ON DESIGN FOR WEB-BASED SUPPORT IN LESS STRUCTURED CONTEXTS - the needs and views of young carers
- 2011
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Licentiate thesis (other academic/artistic)abstract
- DEGREE OF LICENTIATE IN PSYCHOLOGY ABSTRACT Elf, M (2011). Perspectives on design for web-based support in less structured contexts: the needs and views of young carers. Department of Psychology, University of Gothenburg, Sweden. The last decade of extended availability of internet connectivity has increased the search for webbased health infonnation and it seems that quite a large portion of these searches are made by carers. Some of them are probably young carers, that is, young persons having a considerable care responsibility in relation to family members in the same time as many of them remain invisible for health care. Although research of web-based support involve some studies regarding youths, studies involving young carers are very rare. In the present thesis an extended definition of young carer is used and includes young people, 16-25 years of age, living close to and supporting a family member, relative, friend or girlfriend/boyfriend. Study I explores 12 young carers support needs related to the care situation and to a hypothesised web-based support system. Data was collected through interviews and a focus group and analysed with content analysis. The analysis resulted in three themes, each having their sub-themes. Main themes, with sub-themes were knowledge - understanding mental illness, managing the person with mental illness, and self care; communication - shared experiences, advice and feedback, and befriending; and outside involvement - acute relief, structured help, and health care commitments. The study concludes that most needs in the knowledge and communication themes could be supported in a web 2.0 context. To meet the need for befriending and outside involvement a geographically anchored web support with a dedicated staff is suggested, mediating their relationships with health and social care and offering a vicarious trust. Study II explored a participatory design process, with the aim to reveal what topics a group of young carers found important and how their views differed from the representatives of the project. The study included 8 participants, of which 7 from the previous study. Five consecutive design meetings were video recorded and analysed with content analysis and with use of Dewey's concept of public. Results revealed four themes of topics: Communicating the message - targeting, displaying competence, and serious attitude; ideational working principles - support goals, methods and means of support; considerations of user interaction - privacy versus publicity, risk management; user interface - user adaptation, and structural issues. Furthennore differences in the views of participants versus project representatives were revealed. In summary participants view of the user was a person that had a usefulness perspective and the object for support was primarily the person with mental illness. The project representatives' view was a person that had a short- and long-tenn self-care perspective and the object of support was primarily him-/she. The study identified four essential structures in a web-based support system and concludes that early user involvement and critical reflection is crucial in the design of web-based support systems. Key words: Young carers, Support needs, Participatory design, Web-based, Internet, Support system, Publics. ISSN 1101-718X ISRN/GU/PSYKI AVH--245--SE Mikael EIf, Department of psychoIogy, University of Gothenburg, Box 500, 405 30 Gothenburg, Phone: +46709486515, E-mail:mikael.elf@llsy.gu.se
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7. |
- Elf, Mikael, 1959, et al.
(author)
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The web is not enough, its a base - an explorative study of what needs a web-based support system for young carers must meet
- 2011
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In: Informatics for Health and Social Care. - London : Informa Healthcare. - 1753-8157 .- 1753-8165. ; 36:4, s. 206-219
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Journal article (peer-reviewed)abstract
- The aim of this study was to gain knowledge about the specific needs that a web-based support system for young carers (YCs) must meet. Twelve young people with experience of caring for and supporting a close friend, partner or relative with mental illness (MI) were interviewed about their life situation, support needs and opinions about a hypothetical web-based support system. The transcribed interviews were analysed using content analysis. The analysed data were organised into three themes relating to support needs, each including a number of sub-themes: knowledge - understanding MI, managing the mentally ill person and self-care; communication - shared experiences, advice and feedback, and befriending; and outside involvement - acute relief, structured help and health care commitments. Web-based support for YCs may be a suitable way to meet the need for knowledge and to meet some of the needs for communication. We have outlined a concept of a geographically anchored web support to meet the need for befriending, facilitate connections to health and social care, and increase understanding and interaction between the parties involved. Further research is needed to corroborate the results.
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9. |
- Elf, Mikael, 1959, et al.
(author)
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Young carers as co-designers of a web-based support system - the views of two publics.
- 2011
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In: Advances in Health Care Sciences Conference, Oct 18-19 2011, Karolinska Institutet, Stockholm.
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Conference paper (peer-reviewed)abstract
- Aims: The aims of the study was to reveal young carers views of design of a web-base support system directed to them and to reveal differences between their views and the views of project representatives, in a participatory design process. Methods: Eight young people, 17-24, close to and supporting someone with mental illness were involved in either a work or a test group. The work group participated in video recorded design meetings with representatives of the project. Content analysis and Dewey's concept of public were applied on the data. The test group worked from their homes and data were collected via test forms. Data from the test group coherent to the content of the design meetings were added as supplement. Results: Four resulting themes were revealed, constituting key-parts in the design of the WBSS: Communicating the message, ideational working principles, considerations on user interaction, and user interface. Furthermore decisive differences between the views of participants and project representatives were found. Participants view of the user was a person that had a usefulness perspective and the object for support was primarily the person with mental illness. The project representatives' view of the user was a person that had a short- and long-term self-care perspective and the object of support was primarily him-/herself. Conclusion: The design of a WBSS for young carers should consider four key-parts, but early user involvement and critical reflection in the PD process itself may be crucial to discern differences between designers and user, not the least when their different publics overlap.
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10. |
- Elf, Mikael, 1959, et al.
(author)
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Young carers as co-designers of a web-based support system - the views of two publics
- 2012
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In: Informatics for Health and Social Care. - : Informa UK Limited. - 1753-8157 .- 1753-8165. ; 37:4, s. 203-216
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Journal article (peer-reviewed)abstract
- Aim: The aim of the study was to reveal young carers’ views of design of a web-based support system (WBSS) directed to them and the differences between their views and the views of project representatives (PRs), in a participatory design process. Methods: Eight young people, 17–24 years, were involved in either a work or a test group. The work group participated in video-recorded design meetings with representatives of the project. Content analysis and Dewey’s concept of public were applied on the data. The test group worked from their homes and data were collected via test forms and used as supplemental data. Results: Four themes were revealed, constituting key parts in the design of the WBSS: Communicating the message, Ideational working principles, User interaction and User interface. Furthermore, decisive differences between the views of participants and PRs were found. Conclusion: The four key parts should be considered in a WBSS directed to young carers. The study also suggests that early user involvement and critical reflection in the design process itself may be crucial to discern differences in perspective between designers and users.
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