The effect of internet-administered support (carer eSupport) on preparedness for caregiving in informal caregivers of patients with head and neck cancer compared with support as usual: a study protocol for a randomized controlled trial.

BACKGROUND: Informal caregivers (ICs) of patients with cancer provide essential and mainly uncompensated care. A self-perceived preparedness to care for the patient is associated with a lower caregiver burden, described as the extent to which caregiving is perceived as having adverse effects on IC functioning and well-being. ICs' well-being is associated with patient-perceived quality of care, suggesting that interventions to optimize ICs' health are essential in order to improve patient care. Head and neck cancer (HNC) is the seventh most common malignant disease in the world. The disease and its treatment have a significant negative impact on the patient's health and quality of life. Symptoms usually interfere with swallowing, food and fluid intake, breathing, speaking, and communication. ICs frequently manage patients' symptoms and side effects, especially problems related to nutrition and oral pain, without being properly prepared. Carer eSupport is an Internet-administered intervention, based on focus group discussions with ICs, developed in collaboration with ICs and healthcare professionals, tested for feasibility, and deemed feasible. This study protocol outlines the methods of investigating the effects of Carer eSupport plus support as usual (SAU) on self-reported preparedness for caregiving, caregiver burden, and well-being in the ICs of patients with HNC, compared with ICs receiving SAU only. METHODS AND ANALYSIS: In this randomized controlled trial, 110 ICs of patients with HNC, undergoing radiotherapy combined with surgery and/or medical oncological treatment, will be randomized (1:1) to Carer eSupport plus SAU or SAU only. Data will be collected at baseline (before randomization), post-intervention (after 18 weeks), and 3 months after post-intervention. The primary outcome is self-reported preparedness for caregiving. Secondary outcomes are self-reported caregiver burden, anxiety, depression, and health-related quality of life. The effect of Carer eSupport plus SAU on preparedness for caregiving and secondary outcomes, compared with SAU only, will be evaluated by intention to treat analyses using linear regression models, mixed-model regression, or analysis of covariance. DISCUSSION: If proven effective, Carer eSupport has the potential to significantly improve ICs' preparedness for caregiving and their wellbeing, thereby improving patient-perceived quality of care and patient wellbeing. TRIAL REGISTRATION: ClinicalTrials.gov; NCT06307418, registered 12.03.2024 (https://clinicaltrials.gov/search? term=NCT06307418).

Adolescents' reasons for accessing their health records online, perceived usefulness and experienced provider encouragement: a national survey in Sweden.

BACKGROUND: Having online access to electronic health records (EHRs) may help patients become engaged in their care at an early age. However, little is known about adolescents using patient portals. A national survey conducted within the Nordic eHealth project NORDeHEALTH provided an important opportunity to advance our understanding of adolescent users of patient portals. The present study explored reasons for reading the EHRs, the perceived usefulness of information and functions in a patient portal and the association between frequency of use and encouragement to read the EHR. METHODS: Data were collected in a survey using convenience sampling, available through the Swedish online health portal during 3 weeks in January and February 2022. This study included a subset of items and only respondents aged 15-19. Demographic factors and frequencies on Likert-style questions were reported with descriptive statistics, while Fisher's exact test was used to explore differences in use frequency based on having been encouraged to read by a healthcare professional (HCP). RESULTS: Of 13 008 users who completed the survey, 218 (1.7%) were unique users aged 15-19 (females: 77.1%). One-fifth (47/218, 21.6%) had been encouraged by HCPs to read their records, and having been encouraged by HCPs was related to higher use frequency (p=0.018). All types of information were rated high on usefulness, while some functions were rated low, such as blocking specific clinical notes from HCPs and managing services for family members. The main reason for reading their health records online was out of curiosity. CONCLUSIONS: Adolescents who read their records online perceive it to be useful. Encouragement by HCPs can lead to increased use of patient portals among adolescents. Findings should be considered in the future design of patient portals for adolescents.

Security and Privacy of Online Record Access: A Survey of Adolescents' Views and Experiences in Sweden.

PURPOSE: Ensuring security of online health records and patients' perceptions of security are concerns in adolescent healthcare. Little is known about adolescents' perceptions about healthcare's ability to protect online health records. This article explores adolescents' perspectives on security and privacy of their online health records, potential differences based on gender and health, attitudes to sharing information, and perceptions of what constitutes sensitive information. METHODS: This study included a subset of items from a national online patient survey conducted in Sweden (January-February 2022), focusing on respondents aged 15-19 years. Gender and health status differences were calculated using the Kruskal-Wallis test. RESULTS: Of 218 adolescent respondents (77.1% female), a minority had security and privacy concerns. A notable proportion (41.3%) wished to control who could see their records, and those who reported better perceived health were more likely to want to manage access to their electronic health record (H = 13.569, p = .009). Most had not experienced unauthorized access to their records (75.2%) and had never shared health information on other online applications (85.8%). More than half (56.0%) perceived some information as sensitive, where mental health was the most common (76.0%). Most felt that reading their notes improved their trust for their healthcare professional (65.6%) and supported better communication with healthcare professionals (66.5%). DISCUSSION: In this national survey, adolescents generally reported few concerns about patient portals. Findings emphasize the need for security and privacy protection and to empower adolescents with greater control over access to their health information housed in electronic health record systems.

Benchmarking usability of patient portals in Estonia, Finland, Norway, and Sweden.

INTRODUCTION: Poor usability is a barrier to widespread adoption of electronic health records (EHR). Providing good usability is especially challenging in the health care context, as there is a wide variety of patient users. Usability benchmarking is an approach for improving usability by evaluating and comparing the strength and weaknesses of systems. The main purpose of this study is to benchmark usability of patient portals across countries. METHODS: A mixed-methods survey approach was applied to benchmark the national patient portals offering patient access to EHR in Estonia, Finland, Norway, and Sweden. These Nordic countries have similar public healthcare systems, and they are pioneers in offering patients access to EHR for several years. In a survey of 29,334 patients, both patients' quantitative ratings of usability and their qualitative descriptions of very positive and very negative peak experiences of portal use were collected. RESULTS: The usability scores ranged from good to fair level of usability. The narratives of very positive and very negative experiences included the benefits of the patient portals and experienced usability issues. The regression analysis of results showed that very positive and negative experiences of patient portal use explain 19-35% of the variation of usability scores in the four countries. The percentage of patients who reported very positive or very negative experiences in each country was unrelated to the usability scores across countries. CONCLUSIONS: The survey approach could be used to evaluate usability with a wide variety of users and it supported learning from comparison across the countries. The combination of quantitative and qualitative data provided an approximation of the level of the perceived usability, and identified usability issues to be improved and useful features that patients appreciate. Further work is needed to improve the comparability of the varied samples across countries.

Users' Experiences With Online Access to Electronic Health Records in Mental and Somatic Health Care: Cross-Sectional Study.

BACKGROUND: Patient-accessible electronic health records (PAEHRs) hold promise for empowering patients, but their impact may vary between mental and somatic health care. Medical professionals and ethicists have expressed concerns about the potential challenges of PAEHRs for patients, especially those receiving mental health care. OBJECTIVE: This study aims to investigate variations in the experiences of online access to electronic health records (EHRs) among persons receiving mental and somatic health care, as well as to understand how these experiences and perceptions vary among those receiving mental health care at different levels of point of care. METHODS: Using Norwegian data from the NORDeHEALTH 2022 Patient Survey, we conducted a cross-sectional descriptive analysis of service use and perceptions of perceived mistakes, omissions, and offensive comments by mental and somatic health care respondents. Content analysis was used to analyze free-text responses to understand how respondents experienced the most serious errors in their EHR. RESULTS: Among 9505 survey participants, we identified 2008 mental health care respondents and 7086 somatic health care respondents. A higher percentage of mental health care respondents (1385/2008, 68.97%) reported that using PAEHR increased their trust in health care professionals compared with somatic health care respondents (4251/7086, 59.99%). However, a significantly larger proportion (P<.001) of mental health care respondents (976/2008, 48.61%) reported perceiving errors in their EHR compared with somatic health care respondents (1893/7086, 26.71%). Mental health care respondents also reported significantly higher odds (P<.001) of identifying omissions (758/2008, 37.75%) and offensive comments (729/2008, 36.3%) in their EHR compared with the somatic health care group (1867/7086, 26.35% and 826/7086, 11.66%, respectively). Mental health care respondents in hospital inpatient settings were more likely to identify errors (398/588, 67.7%; P<.001) and omissions (251/588, 42.7%; P<.001) than those in outpatient care (errors: 422/837, 50.4% and omissions: 336/837, 40.1%; P<.001) and primary care (errors: 32/100, 32% and omissions: 29/100, 29%; P<.001). Hospital inpatients also reported feeling more offended (344/588, 58.5%; P<.001) by certain content in their EHR compared with respondents in primary (21/100, 21%) and outpatient care (287/837, 34.3%) settings. Our qualitative findings showed that both mental and somatic health care respondents identified the most serious errors in their EHR in terms of medical history, communication, diagnosis, and medication. CONCLUSIONS: Most mental and somatic health care respondents showed a positive attitude toward PAEHRs. However, mental health care respondents, especially those with severe and chronic concerns, expressed a more critical attitude toward certain content in their EHR compared with somatic health care respondents. A PAEHR can provide valuable information and foster trust, but it requires careful attention to the use of clinical terminology to ensure accurate, nonjudgmental documentation, especially for persons belonging to health care groups with unique sensitivities.

Designing a Mobile e-Coaching App for Immigrant Informal Caregivers: Qualitative Study Using the Persuasive System Design Model.

BACKGROUND: Informal caregivers are vital in caring for their family and friends at home who may have illnesses or disabilities. In particular, the demands for caregiving can be even more challenging for those with limited resources, support systems, and language barriers, such as immigrant informal caregivers. They face complex challenges in providing care for their relatives. These challenges can be related to sociocultural diversity, language barriers, and health care system navigation. Acknowledging the global context of the increasing number of immigrants is essential in designing inclusive mobile health apps. OBJECTIVE: This study aims to investigate the needs of immigrant informal caregivers in Sweden and discuss the application of the Persuasive System Design Model (PSDM) to develop an e-coaching prototype. By addressing the unique challenges faced by immigrant informal caregivers, this study will contribute to the development of more effective and inclusive mobile health apps. METHODS: The participants were considered immigrants and included in the study if they and their parents were born outside of Sweden. Through various channels, such as the National Association of Relatives, rehabilitation departments at municipalities, and immigrant groups, we recruited 13 immigrant informal caregivers. These immigrant informal caregivers were primarily women aged 18 to 40 years. Most participants belonged to the Middle Eastern region whereas some were from North Africa. However, all of them spoke Arabic. We used semistructured interviews to gather data from the participants in Arabic, which were translated into English. Data were analyzed using thematic analysis and discussed in relation to the extended PSDM. The needs of the caregivers were compared with the description of persuasive design principles, and a design principle was chosen based on the match. The PSDM was extended if the need description did not match any principles. Several brainstorming and prototyping sessions were conducted to design the mobile e-coaching app. RESULTS: Immigrant informal caregivers have various needs in their caregiving role. They reported a need for training on the illness and future caregiving needs, assistance with understanding the Swedish language and culture, and help with accessing internet-based information and services. They also required recognition and appreciation for their efforts, additional informal support, and easy access to health care services, which can be important for their mental health. The PSDM was adapted to the informal caregiving context by adding "facilitating conditions" and "verbal encouragement" as additional persuasive design principles. This study also presents the subsequent mobile e-coaching app for immigrant informal caregivers in Sweden. CONCLUSIONS: This study revealed important immigrant informal caregivers' needs based on which design suggestions for a mobile e-coaching app were presented. We also proposed an adapted PSDM, for the informal caregiving context. The adapted PSDM can be further used to design digital interventions for caregiving.

The NORDeHEALTH 2022 Patient Survey: Cross-Sectional Study of National Patient Portal Users in Norway, Sweden, Finland, and Estonia.

BACKGROUND: Although many surveys have been conducted on patients accessing their own health records in recent years, there is a limited amount of nationwide cross-country data available on patients' views and preferences. To address this gap, an international survey of patient users was conducted in the Nordic eHealth project, NORDeHEALTH. OBJECTIVE: We aimed to investigate the sociodemographic characteristics and experiences of patients who accessed their electronic health records (EHRs) through national patient portals in Norway, Sweden, Finland, and Estonia. METHODS: A cross-sectional web-based survey was distributed using the national online health portals. The target participants were patients who accessed the national patient portals at the start of 2022 and who were aged ≥15 years. The survey included a mixture of close-ended and free-text questions about participant sociodemographics, usability experience, experiences with health care and the EHR, reasons for reading health records online, experience with errors, omissions and offense, opinions about security and privacy, and the usefulness of portal functions. In this paper, we summarized the data on participant demographics, past experience with health care, and the patient portal through descriptive statistics. RESULTS: In total, 29,334 users completed the survey, of which 9503 (32.40%) were from Norway, 13,008 (44.35%) from Sweden, 4713 (16.07%) from Finland, and 2104 (7.17%) from Estonia. National samples were comparable according to reported gender, with about two-thirds identifying as women (19,904/29,302, 67.93%). Age distributions were similar across the countries, but Finland had older users while Estonia had younger users. The highest attained education and presence of health care education varied among the national samples. In all 4 countries, patients most commonly rated their health as "fair" (11,279/29,302, 38.48%). In Estonia, participants were more often inclined to rate their health positively, whereas Norway and Sweden had the highest proportion of negative health ratings. Across the whole sample, most patients received some care in the last 2 years (25,318/29,254, 86.55%). Mental health care was more common (6214/29,254, 21.24%) than oncological care (3664/29,254, 12.52%). Overall, most patients had accessed their health record "2 to 9 times" (11,546/29,306, 39.4%), with the most frequent users residing in Sweden, where about one-third of patients accessed it "more than 20 times" (4571/13,008, 35.14%). CONCLUSIONS: This is the first large-scale international survey to compare patient users' sociodemographics and experiences with accessing their EHRs. Although the countries are in close geographic proximity and demonstrate similar advancements in giving their residents online records access, patient users in this survey differed. We will continue to investigate patients' experiences and opinions about national patient-accessible EHRs through focused analyses of the national and combined data sets from the NORDeHEALTH 2022 Patient Survey.

Errors, Omissions, and Offenses in the Health Record of Mental Health Care Patients: Results from a Nationwide Survey in Sweden.

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.

To connect or not connect: long-term adoption of video consultations, and reasons for discontinuing use.

INTRODUCTION: This study investigates factors related to long-term and short-term adoption of video consultations (VCs) and reasons for discontinuing use among primary care patients. METHODS: A sample of primary care patients using VCs with healthcare providers were invited to take a survey in a cross-sectional study. Participants were asked about their intention to continue to have video consultations in the future, and those indicating no intention to use VCs in the future (short-term adopters) were asked about their reasons for this. Prevalence and statistical differences between long-term and short-term adopters were investigated. RESULTS: There were several statistically significant differences between long-term and short-term adopters (76% vs. 24%). Long-term adopters consisted of more middle-aged individuals (35-54 years) and the majority worked full-time (56%). They had more positive opinions of VCs and used VCs and video meetings for other purposes to a larger extent. They chose VCs because of the lack of time to go to the healthcare centre and because their provider offered them. The most common reason for discontinuing use was a preference for face-to-face consultations, with the youngest age group (16-34 years) reporting this to a larger extent. DISCUSSION: Younger and older age groups may be less likely to continue the use of VCs, potentially preserving the digital divide. Additionally, disparities in using similar technologies might contribute to the digital divide. Moreover, convenience, positive opinions of VCs, and experience with VCs were related to long-term adoption. Further studies are needed to explore non-use, age's influence, and address usability issues.

Information technology use and tasks left undone by nursing staff: A qualitative analysis.

Nursing staff perceive information technology (IT) as time-consuming and impinging on direct patient care time. Despite this, researchers have directed little attention toward the interplay between IT use and tasks left undone by nursing staff. In this paper, we analyze interview and focus group data on hospital nursing staff's experience working with IT to identify ways IT use interacts with tasks left undone. We found that tasks left undone by nursing staff can have IT-related antecedents and that IT-related tasks are also sometimes left undone. This analysis adds to the body of knowledge by showing that tasks related to the work environment and IT can be left undone and that nursing staff avoid certain IT-supported tasks because they do not know how to do them or why they ought to be done. These findings form the basis for our call for further research on the topic.

Designing and Evaluating IT Applications for Informal Caregivers: Protocol for a Scoping Review.

BACKGROUND: A growing number of informal caregivers in many countries are important for effective functioning of health care in our society. Hence, they must receive the required support and services to continue providing care. IT applications can be used to support informal caregivers in their caregiving activities. However, evidence-informed guidelines for developing such IT applications and their evaluation are scarce. Hence, this scoping review can aid researchers and designers by providing design recommendations for IT apps for caregivers and potentially improve the design of IT applications for caregivers to meet their needs better. OBJECTIVE: This study aims to describe the proposal for a scoping review of current practices and recommendations in designing and evaluating IT applications for informal caregivers. The scoping review will also discuss the opportunities and challenges in designing these IT applications. METHODS: We will use a 5-step scoping review methodology to map relevant literature published as follows: (1) identify the research question, (2) identify relevant studies, (3) select relevant studies for review, (4) chart the data from selected literature, and (5) summarize and report results. A structured search will be conducted in PubMed, Scopus, IEEE digital library, Web of Science, and ACM Digital Library databases. In addition, hand searches of reference lists and keyword searches in Google Scholar will also be conducted. Inclusion criteria will be researched (journal and conference) articles focused on IT applications designed for use by informal caregivers and study type to be qualitative studies. Two reviewers will independently identify articles for review and extract data. Conflicts will be discussed, and a third reviewer will be consulted if a consensus cannot be reached. These data will be analyzed using thematic analysis. RESULTS: The results from this scoping review will be presented in a narrative form, and additional data on study characteristics will be presented in diagrams or tabular format. Uppsala University first initiated this scoping review protocol in December 2021 as part of the European Union-funded project ENTWINE. This work was also supported by the Swedish Research Council and the Swedish Cancer Society. The results will be presented in August 2023 and will be disseminated through a report to the European Union and a peer-reviewed journal publication. In addition, the team plans to share its findings on various public platforms, including social media, blog posts, and relevant conferences and workshops. CONCLUSIONS: This is, to our knowledge, the first study to map the literature on the design and evaluation of IT applications for informal caregivers. The scoping review's results will detail the requirements, design suggestions, and user preferences, as well as the usability criteria and features of IT applications for informal caregivers. A mapping of studies could inform the design and implementation of future IT applications for informal caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/47650.

Design suggestions for a persuasive e-coaching application: A study on informal caregivers' needs.

Objective: Informal caregivers such as relatives or close friends of patients are essential for caregiving at home. However, caregiving is a complex experience that may affect the caregivers' well-being. Therefore, there is a need to provide support for caregivers, which we address in this article by proposing design suggestions for an e-coaching application. This study identifies the unmet needs of caregivers in Sweden and provides design suggestions for an e-coaching application using the persuasive system design (PSD) model. The PSD model offers a systematic approach to designing IT interventions. Methods: A qualitative research design was used, and semi-structured interviews were conducted with 13 informal caregivers from different municipalities in Sweden. A thematic analysis was performed to analyze the data. The PSD model was used to map the needs emerging from this analysis to propose design suggestions for an e-coaching application for caregivers. Results: Six needs were identified, and based on them, we proposed design suggestions for an e-coaching application using the PSD model. These unmet needs are monitoring and guidance, assistance to avail formal care services, access to practical information without being overwhelmed, feeling of community, access to informal support, and grief acceptance. The last two needs could not be mapped using the existing PSD model, resulting in an extended PSD model. Conclusion: This study revealed the important needs of informal caregivers based on which design suggestions for an e-coaching application were presented. We also proposed an adapted PSD model. This adapted PSD model can be further used for designing digital interventions in caregiving.

Understanding the challenges and need for support of informal caregivers to individuals with head and neck cancer - A basis for developing internet-based support.

PURPOSE: Being an informal caregiver of an individual with head and neck cancer can be demanding. Still, informal caregivers can provide valuable support to patients throughout the disease trajectory. The aim of this study was to explore informal caregivers' views on their challenges and needs in attaining high preparedness for caregiving. METHODS: Fifteen informal caregivers of individuals with head- and neck cancer participated in a focus group discussion or an individual interview. Thematic analysis utilizing an inductive approach was performed. RESULTS: The results describe the challenges that informal caregivers to individuals with head and neck cancer perceive and their needs for support in preparedness for caregiving. Three main themes were found: Challenges of being an informal caregiver, Transformation in life and Informal caregiver' needs of support and sharing care. CONCLUSION: This study contributes to the understanding of the challenges for informal caregivers to individuals with head and neck cancer in increasing preparedness for caregiving. To improve preparedness for caregiving, informal caregivers need education, information and support regarding physical, psychological and social issues for individuals with head and neck cancer.

Positive Design Framework for Carer eSupport: Qualitative Study to Support Informal Caregivers of Patients With Head and Neck Cancer in Sweden.

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 health care professionals. Both informal caregivers and health care 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 eHealth interventions with a clear focus on users' well-being and positive emotions, especially for informal caregivers of patients with HNC. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2021-057442.

Designing a Persuasive E-Coaching Application for Informal Caregivers.

Being an informal caregiver is not easy, and might cause physical and psychosocial burden, especially in the long run. However, the formal health care system has little support for informal caregivers who experience abandonment and lack information. Mobile health can potentially be an efficient and cost-effective way of supporting informal caregivers. However, research has shown that mHealth systems often have problems with usability, and people do not use the systems for more than a short period. Therefore, this paper explores the design of an mHealth app using Persuasive Design, an established design framework. This paper presents the design of the first version of the e-coaching application using the persuasive design framework and unmet needs of informal caregivers from the literature. This prototype version will be updated based on interview data from informal caregivers in Sweden.

Effects of patient accessible electronic health records on nurses' work environment: a survey study on expectations in Sweden.

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.

Implementing Large-Scale Electronic Health Records: Experiences from implementations of Epic in Denmark and Finland.

BACKGROUND: With the still larger scale of electronic health records (EHRs), their implementation has become increasingly complex. In this study, we focus on one large-scale EHR - Epic. PURPOSE: We analyze the Epic implementations in Denmark and Finland to understand how healthcare professionals experience this large-scale EHR. METHOD: The study is based on documentary analysis. The analyzed documents include user surveys, assessment reports, material from project partners, and research papers. RESULTS: The Danish and Finnish Epic implementations are still troubled five and three years, respectively, after the first go-live. In Denmark, the business case and implementation process have been sharply criticized. The correction of usability problems and unstable system integrations have been slow, the time required to perform common clinical tasks has increased, and 32% of the users remain dissatisfied or very dissatisfied with the system. In Finland, the physicians and nurses experience improved technical performance but inferior usability and reduced work support compared to the EHR they used before Epic; only 4.7% (physicians) and 7.3% (nurses) agree that patient information is easy to access, and only 9.3% (physicians) and 26.2% (nurses) agree that Epic helps improve the quality of care. CONCLUSION: The post-implementation experiences from the two implementations contradict pre-implementation expectations. Specifically, the consequences of using Epic have become salient only after go-live. As a result, the implementing organizations and their users have predominantly found themselves in a reactive mode of fending off problems rather than a proactive mode of realizing benefits.

Internet-based support for informal caregivers to individuals with head and neck cancer (Carer eSupport): a study protocol for the development and feasibility testing of a complex online intervention.

INTRODUCTION: It is strongly recommended that randomised controlled trials are preceded with an exploration of the needs of the target population and feasibility testing of the intervention. The present study protocol is set out to describe these steps in the development of a complex intervention.The past decades' transition of care from inpatient to outpatient settings has increased the complexity of caregivers' responsibilities, which they may not be prepared for. There is a need to support informal caregivers (ICs) to prepare them for caregiving and decrease the caregiver burden. The main aim of this study is to describe the development of an internet-based intervention (Carer eSupport) to improve ICs' ability to support individuals with head and neck cancer and to describe the testing of the feasibility and acceptability of Carer eSupport. METHODS AND ANALYSIS: This is a multicentre study involving the ear, nose and throat clinics and the oncology and radiotherapy clinics at three university hospitals. The study protocol comprises two phases, development and feasibility testing, using the Medical Research Council framework for developing a complex intervention. Carer eSupport will be based on the results from focus group discussions with ICs and healthcare professionals (planned for n=6-8 in respective groups) and scientific evidence, the Social Cognitive Theory and the Theory of Acceptance and Use of Technology. The feasibility testing will include 30 ICs who will have access to Carer eSupport for 1 month. The feasibility testing will be evaluated with a mixed-method design. ETHICS AND DISSEMINATION: All procedures have been approved by the Ethics Committee at Uppsala University (Dnr: 2020-04650). Informed consent will be obtained before enrolment of patients, their ICs and healthcare staff. The feasibility testing is registered at Clinicaltrials.gov (Identifier: NCT05028452). Findings will be disseminated in peer-reviewed journal publications. TRIAL REGISTRATION NUMBER: Clinicaltrials.gov (Identifier: NCT05028452).

Patients' Access to Their Psychiatric Records - A Comparison of Four Countries.

Several Nordic and Baltic countries are forerunners in the digitalization of patient ehealth services and have since long implemented psychiatric records as parts of the ehealth services. There are country-specific differences in what clinical information is offered to patients concerning their online patient accessible psychiatric records. This study explores national differences in Sweden, Norway, Finland, and Estonia in patient access to their psychiatric records. Data was collected through a socio-technical data collection template developed during a workshop series and then analyzed in a cross-country comparison focusing on items related to psychiatry records online. The results show that psychiatric records online are offered to patients in all four countries, and provide the same functionality and similar psychiatry information. Overall, the conclusion is that experiences of various functionalities should be scrutinized to promote transparency of psychiatric records as part of the national eHealth services to increase equality of care and patient empowerment.

Healthcare Professionals' Experiences of the Work Environment After Patients' Access to Their Electronic Health Records - A Qualitative Study in Primary Care.

For healthcare personnel, the work environment is already challenging, and when eHealth systems are introduced they are often considered to further add to the complexity. This paper investigates the impact of patients' access to their electronic health records on healthcare professionals' work environment in a primary care setting in Sweden. A work environment theory-driven analysis, focusing on perceived demands, control and support, was conducted on 14 semi-structured interviews of different primary care professionals. The professionals expressed a slight increase in demands, loss of control and some increase and decrease of support. This study discusses insights on how patients' access to health records can have an impact on healthcare professionals' work environment.