| 1. |
- Ahmad, Awais, et al.
(författare)
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Designing for Human Well-Being : A Case Study with Informal Caregivers of Individuals with Cancer
- 2022
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Ingår i: Studies in Health Technology and Informatics. - : IOS Press. - 0926-9630 .- 1879-8365. ; 294, s. 214-218
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Tidskriftsartikel (refereegranskat)abstract
- Informal Caregivers such as a spouse, other close relatives or friends of cancer patients can play an essential role in home-based treatment and care. However, the informal caregivers might not be prepared for this responsibility, and they might have several unmet requirements for taking care of patients in the home environment. The informal caregivers’ physical, social and psychological health is also profoundly affected due to the health conditions of their relatives. We propose a User-centred Positive Design as a hybrid framework by merging the traditional User-cantered design and positive design frameworks to enhance the informal caregivers’ subjective well-being. Our ongoing project (Carer-eSupport) will be used as a case study, and its main objective is to co-create and evaluate a web-based support system for informal caregivers of people with cancer. The proposed framework can be used for the design and development of health information systems with a special focus on users’ wellbeing and positive emotions.
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| 2. |
- Ahmad, Awais, et al.
(författare)
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Positive Design Framework for Carer-eSupport : A Qualitative Study to Support Informal Caregivers of Patients with Head and Neck Cancer in Sweden
- 2023
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Ingår i: JMIR Cancer. - : JMIR Publications. - 2369-1999. ; 9
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Tidskriftsartikel (refereegranskat)abstract
- Background: Informal caregivers of patients with head and neck cancer (HNC), such as the patient’s spouse, other close relatives, or friends, can play an important role in home-based treatment and health care. Research shows that informal caregivers are usually unprepared for this responsibility and need support with taking care of patients and other daily life activities. These circumstances place them in a vulnerable position, and their well-being may be compromised. This study is part of our ongoing project Carer eSupport, which aims to develop a web-based intervention to facilitate informal caregivers in the home environment. Objective: This study aimed to explore the situation and context of informal caregivers of patients with HNC and their needs for designing and developing a web-based intervention (Carer eSupport). In addition, we proposed a novel framework for the development of a web-based intervention aimed at promoting the well-being of informal caregivers. Methods: Focus groups were conducted with 15 informal caregivers and 13 healthcare professionals. Both informal caregivers and healthcare professionals were recruited from 3 university hospitals in Sweden. We adopted a thematic data analysis process to analyze the data.Results: We investigated informal caregivers’ needs, critical factors for adoption, and desired functionalities of Carer eSupport.A total of 4 major themes, including information, web-based forum, virtual meeting place, and chatbot, emerged and were discussed by informal caregivers and health care professionals for Carer eSupport. However, most study participants did not like the idea of a chatbot for asking questions and retrieving information and expressed their concerns such as a lack of trust in robotic technologies and missing human contact while communicating with chatbots. The results from the focus groups were discussed through the lens of positive design research approaches.Conclusions: This study provided an in-depth understanding of informal caregivers’ contexts and their preferred functions for a web-based intervention (Carer eSupport). Using the theoretical foundation of designing for well-being and positive design in the informal caregiving context, we proposed a positive design framework to support informal caregivers’ well-being. Our proposed framework might be helpful for human-computer interaction and user experience researchers to design meaningful health interventions with a clear focus on users’ well-being and positive emotions, especially for informal caregivers of patients with HNC.
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| 3. |
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| 4. |
- Bärkås, Annika, et al.
(författare)
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Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients : Results from a Nationwide Survey in Sweden
- 2023
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Ingår i: Journal of Medical Internet Research. - : JMIR Publications. - 1438-8871. ; 25
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Previous research reports that patients with mental health conditions experience benefits, for example, increased empowerment and validation, from reading their patient-accessible electronic health records (PAEHRs). In mental health care (MHC), PAEHRs remain controversial, as health care professionals are concerned that patients may feel worried or offended by the content of the notes. Moreover, existing research has focused on specific mental health diagnoses, excluding the larger PAEHR userbase with experience in MHC. OBJECTIVE: The objective of this study is to establish if and how the experiences of patients with and those without MHC differ in using their PAEHRs by (1) comparing patient characteristics and differences in using the national patient portal between the 2 groups and (2) establishing group differences in the prevalence of negative experiences, for example, rates of errors, omissions, and offenses between the 2 groups. METHODS: Our analysis was performed on data from an online patient survey distributed through the Swedish national patient portal as part of our international research project, NORDeHEALTH. The respondents were patient users of the national patient portal 1177, aged 15 years or older, and categorized either as those with MHC experience or with any other health care experience (nonmental health care [non-MHC]). Patient characteristics such as gender, age, education, employment, and health status were gathered. Portal use characteristics included frequency of access, encouragement to read the record, and instances of positive and negative experiences. Negative experiences were further explored through rates of error, omission, and offense. The data were summarized through descriptive statistics. Group differences were analyzed through Pearson chi-square. RESULTS: Of the total sample (N=12,334), MHC respondents (n=3131) experienced errors (1586/3131, 50.65%, and non-MHC 3311/9203, 35.98%), omissions (1089/3131, 34.78%, and non-MHC 2427/9203, 26.37%) and offenses (1183/3131, 37.78%, and non-MHC 1616/9203, 17.56%) in the electronic health record at a higher rate than non-MHC respondents (n=9203). Respondents reported that the identified error (MHC 795/3131, 50.13%, and non-MHC 1366/9203, 41.26%) and omission (MHC 622/3131, 57.12%, and non-MHC 1329/9203, 54.76%) were "very important," but most did nothing to correct them (MHC 792/3131, 41.29%, and non-MHC 1838/9203, 42.17%). Most of the respondents identified as women in both groups. CONCLUSIONS: About 1 in 2 MHC patients identified an error in the record, and about 1 in 3 identified an omission, both at a much higher rate than in the non-MHC group. Patients with MHC also felt offended by the content of the notes more commonly (1 in 3 vs 1 in 6). These findings validate some of the worries expressed by health care professionals about providing patients with MHC with PAEHRs and highlight challenges with the documentation quality in the records.
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| 5. |
- Bärkås, Annika, et al.
(författare)
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Patients’ access to their psychiatric notes : Current policies and practices in Sweden
- 2021
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Ingår i: International Journal of Environmental Research and Public Health. - : MDPI. - 1661-7827 .- 1660-4601. ; 18:17
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Tidskriftsartikel (refereegranskat)abstract
- Patients’ access to electronic health records (EHRs) is debated worldwide, and access to psychiatry records is even more criticized. There is a nationwide service in Sweden which offers all citizens the opportunity to read their EHR, including clinical notes. This study aims to explore Swedish national and local policy regulations regarding patients’ access to their psychiatric notes and describe to what extent patients currently are offered access to them. The rationale behind the study is that current policies and current practices may differ between the 21 self-governing regions, although there is a national regulation. We gathered web-based information from policy documents and regulations from each region’s website. We also conducted key stakeholder interviews with respondents from the regions and cross-regional private care providers, using a qualitative approach. The results show that 17 of 21 regions share psychiatric notes with patients, where forensic psychiatric care was the most excluded psychiatric care setting. All private care providers reported that they mainly follow the regions’ guidelines. Our findings show that regional differences concerning sharing psychiatric notes persist, despite Swedish regulations and a national policy that stipulates equal care for everyone. The differences, however, appear to have decreased over time, and we report evidence that the regions are moving toward increased transparency for psychiatry patients.
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| 6. |
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| 7. |
- Cajander, Åsa
(författare)
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Complex systems for society
- 2018
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Ingår i: XRDS. - : Association for Computing Machinery (ACM). - 1528-4972. ; 25:1, s. 63-63
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Tidskriftsartikel (refereegranskat)
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| 8. |
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| 9. |
- Cajander, Åsa, Professor, 1971-, et al.
(författare)
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Effects of patient accessible electronic health records on nurses' work environment : a survey study on expectations in Sweden
- 2022
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 12:11
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Tidskriftsartikel (refereegranskat)abstract
- OBJECTIVES: The introduction of information and communication technology influences the work environment of large groups of employees in healthcare. In Sweden, a national healthcare service providing patient accessible electronic health records (PAEHR) has been deployed, and this paper investigates nurses' expected effects of this implementation.SETTING: Nurses associated with the Swedish Association of Health Professionals working in healthcare such as primary care, hospitals and midwives in Sweden. Before a full-scale national implementation of PAEHR, a web survey study was distributed nationally. The respondents represented all 21 Swedish regions. Questions included five-point Likert scale questions and open questions.PARTICIPANTS: A survey link was distributed via email to 8460 registered nurses, midwives and union representatives in Sweden. The response rate was 35.4% (2867 respondents: registered nurses 84%; midwives 6%; chief position 5%; in projects 2% and other 3%). Three reminders were sent out, all of them increasing the response rate. A majority of the respondents were female (89.9%), 8.4% male, whereas 1.7% did not indicate their gender. 31.4% were under 40 years old, 53.8% 40-59 and 13.7% over 60.RESULTS: Data were analysed using exploratory factor analysis with principal component analysis as the extraction method. The analysis revealed three distinct factors related to nurses' expectations of PAEHR: (1) PAEHR improves the quality of care, (2) PAEHR improves the quality of the work environment and (3) risk and fears concerning patients' well-being. Some interesting results include that more experienced nurses are more favourable to PAEHR. Our analysis also shows that the view of the nurse-patient relationship is an essential underlying factor related to positive or negative expectations.CONCLUSIONS: Results show that the expectations and perceptions of PAEHR vary depending on the nurse's view of who the electronic record belongs to. Younger nurses are somewhat more negative towards PAEHR than older nurses.
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| 10. |
- Cajander, Åsa, Professor, 1971-, et al.
(författare)
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Experiences of Extensive User Involvement through Vision Seminars in a Large IT Project
- 2023
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Ingår i: Interacting with computers. - : Oxford University Press. - 0953-5438 .- 1873-7951. ; 35:4, s. 543-552
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Tidskriftsartikel (refereegranskat)abstract
- As the complexity of IT systems increases, the demand for methods taking the whole work situation into account grows. The Vision Seminar (VS) process addresses the future usage of technologies in complex digital work environments. This paper describes the experiences of conducting the VS process in the context of a large IT project to improve study-administrative work. The participants and stakeholders' experiences of participating in VS workshops were studied as the effect the participants and stakeholders believed the vision might have. Data were gathered through interviews and a survey. The participants were confident that the time spent on workshops was worthwhile and that achieving the future described in the resulting vision was feasible. The stakeholders perceived the VS process as rigorous. They were happily surprised by the positive spirit and engagement displayed by the participants. The utility of the resulting vision not being obvious was the most notable weakness mentioned.
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