"It's about how you take in things with your brain" - young people's perspectives on mental health and help seeking: an interview study.

INTRODUCTION: Poor mental health in young people has become a growing problem globally over the past decades. However, young people have also been shown to underutilize available healthcare resources. The World Health Organisation (WHO) has formulated guidelines for youth-friendly health services (YFHSs) to increase youth participation in healthcare. Still, little is known about how young people using these services perceive mental health, indicating a knowledge gap concerning the subjective evaluation of their mental health. AIM: To investigate how young people visiting youth health clinics (YHC) perceive the concept of mental health and factors they view as central to maintaining mental health. METHODS: In total 21 interviews were carried out, 16 in 2018, and 5 in 2023 to assure no changes in findings after the COVID-19 pandemic. Subjects were recruited during visits to youth health clinics (YHCs) in mid-Sweden and were aged 15-23 years. Recruitment strived to achieve heterogeneity in the sample concerning gender, sexual orientation, gender identity and age. Interviews were transcribed and analysed using qualitative content analysis. FINDINGS: Findings of the analysis revealed two themes, "Mental health is helped and hindered by the surroundings" and "Mental health is difficult to understand and difficult to achieve". The participants described their health as highly dependent on their social surroundings, and that these are important to maintaining health but may also affect health negatively. They described mixed experiences of the health care services and mentioned prerequisites for seeking care for mental health problems such as accessibility and respect for their integrity, including the right to turn down offered treatment. The informants also viewed mental health as an ongoing undertaking that one must work for, and that it is sometimes difficult to know what constitutes mental health. They also expressed a need from healthcare services to enquire about their health, and to show an active interest in how they are doing. CONCLUSIONS: Findings underline the need of young people's individual needs to be met in the healthcare system and their vulnerability to their social surroundings. Health status assessments in young people should consider social and individual factors to fully capture mental health.

Identification of health-related problems in youth: a mixed methods feasibility study evaluating the Youth Health Report System.

BACKGROUND: Because poor health in youth risk affecting their entry in adulthood, improved methods for their early identification are needed. Health and welfare technology is widely accepted by youth populations, presenting a potential method for identifying their health problems. However, healthcare technology must be evidence-based. Specifically, feasibility studies contribute valuable information prior to more complex effects-based research. The current study assessed the process, resource, management, and scientific feasibility of the Youth Health Report System prototype, developed within a youth health clinic context in advance of an intervention study. METHODS: This mixed-methods feasibility study was conducted in a clinical setting. The process, resource, management, and scientific feasibility of the Youth Health Report System were investigated, as recommended in the literature. Participants were youth aged 16-23 years old, attending a youth health clinic, and healthcare professionals from three clinics. The youth participants used their smart phones to respond to Youth Health Report System health questions and healthcare professionals used their computer to access the results and for registration system entries. Qualitative data were collected from interviews with healthcare professionals, which were described with thematic analysis. Youth participants' quantitative Youth Health Report System data were analyzed for descriptive statistics. RESULTS: Feasibility analysis of qualitative data from interviews with 11 healthcare professionals resulted in three themes: We expected it could be hard; Information and routines helped but time was an issue; and The electronic case report form was valuable in the health assessment. Qualitative data were collected from the Youth Health Report System. A total of 54 youth participants completed the evaluation questionnaire, and healthcare professionals retrieved information from, and made post-appointment system entries. Quantitative results revealed few missing items and acceptable data variability. An assessment template of merged qualitative and quantitative data guided a consensus discussion among the researchers, resulting in acceptable feasibility. CONCLUSIONS: The process-, resource-, management-, and scientific feasibility aspects were acceptable, with some modifications, strengthening the potential for a successful Youth Health Report System intervention study.

Development and usability evaluation of an electronic health report form to assess health in young people: a mixed-methods approach.

BACKGROUND: Electronic Patient-Reported Outcomes (ePROs) have potential to improve health outcomes and healthcare. The development of health-technology applications, such as ePROs, should include the potential users and be theoretically grounded. Swedish Youth Health Clinics (YHCs) offer primarily sexual and psychological healthcare for young people aged 12 to 25 years old. Young people in healthcare settings are considered a vulnerable group. The development of a collection of Patient-Reported Outcomes (PROs) in an Electronic Health Report Form (eHRF) for identifying health and health-related problems in young people, was preceded by a qualitative interview study, exploring young people's views on using an eHRF at YHCs and which questions about health an eHRF should contain. The aim of the current study was to develop and evaluate the usability of an eHRF prototype for identifying health and health-related problems in young people visiting YHCs. METHODS: This study used a participatory design. During the development, an expert panel consisting of eight researchers and one Information Technology worker, participated. A wide literature search was performed to find PROs to construct an eHRF prototype to cover health areas. A mixed methods usability evaluation included 14 participants (young people, healthcare professionals, and an expert panel). RESULTS: The development resulted in an eHRF prototype, containing ten reliable and valid health questionnaires addressing mental-, physical-, and sexual health and social support, a self-efficacy question, and background questions, in total 74 items. The interviews in the usability evaluation resulted in three categories describing the usability of the eHRF: 'Captures the overall health of young people but needs clarification', 'Fun, easy, and optional and will keep young people's interest', and 'Potential contribution to improve the health consultation'. The quantitative results support the usability of the eHRF for YHCs. CONCLUSIONS: The participatory approach contributed to development of the eHRF prototype to cover health areas adapted for the target population. The usability evaluation showed that the eHRF was usable and had the potential for self-reflection and contributions to cooperation between young people and healthcare professionals during the health consultation.

Digital Health Technologies Enabling Partnerships in Chronic Care Management: Scoping Review.

BACKGROUND: An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited. OBJECTIVE: This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies. METHODS: A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used. RESULTS: This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions. CONCLUSIONS: Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management.

An electronic patient-reported outcome created based on my needs is worth using: an explorative qualitative study investigating young people's opinions for a health assessment tool.

BACKGROUND: Young people in different healthcare settings are positive about using electronic patient-reported outcomes (ePROs), which are meant to increase the effectiveness and safety of interventions from the patient's perspective. Sweden offers free healthcare to young people aged 12-25 years at 275 youth health clinics (YHCs), whose goals are to strengthen young people and promote sexual, physical, and mental health. YHCs need effective ways to identify the overall picture of young people's health and health-related problems. To our knowledge, there is no ePRO for YHCs that provides an overview of young people's health from several health perspectives. The aim of this study was to explore young people's view on content and design of an ePRO to provide an overview of their health and health related problems when visiting a YHC, and their opinion on what healthcare needs to consider when using the ePRO. This was an explorative qualitative study. The participants were included from five YHCs, in different socioeconomic areas in central Sweden. Fifteen participants were included: 10 girls, three boys, and two non-binary participants with an age range of 16-22 years. Data were collected using a semi-structured interview guide and individual interviews, and inductive content analysis was performed. RESULTS: One main theme, "ePRO created based on my needs is worth using" and two sub-themes, "Appealing content and design" and "Trusting healthcare", emerged. The participants wanted that an ePRO should include overall questions about mental-, physical-, and sexual health and social support. Participants also believed the ePRO must disclose the risks of self-harm or suicide. The participants noted the importance of emotional and digital security when using the ePRO and having a confidential conversation with a healthcare provider. To share health information means to trust to gain health. CONCLUSIONS: The study participants' views on content and design can form the basis for designing an ePRO for young people. Their thoughts on safety and treatment in healthcare can be considered in the development process. This study is the starting point for developing an ePRO for young people at YHCs.

Lifestyle counselling - a long-term commitment based on partnership.

BACKGROUND: Lifestyle habits are important factors in the development of non-communicable diseases. Different ways of providing counselling in primary care to promote healthier lifestyle habits have been launched and evaluated in recent years. It is important to provide an insight into what makes lifestyle counselling useful for patients and healthcare providers. OBJECTIVE: The overall aim of this study was to explore patients´ and community health nurses´(CHNs) experiences of lifestyle counselling in primary care to support healthier lifestyle habits. METHODS: Patients and CHNs were interviewed, face to face. Sixteen patients (eight men, eight women, aged 51-75 years) diagnosed with hypertension or type 2 diabetes mellitus and three CHNs participated. Data material was analysed with qualitative content analysis to explore the participants experiences of lifestyle counselling. RESULTS: The theme demonstrates that lifestyle counselling is a long-term commitment based on partnership between patients and CHNs. Five categories describe this partnership: respect and mutual interest, understanding of illness, measurements and goal setting, long-term support, and a structure to support counselling within the primary care unit. CONCLUSION: The results from this study are consistent with and add to previous understanding of how lifestyle counselling can be performed successfully in the context of primary health care. The results emphasize that lifestyle counselling should encompass a partnership based on mutual respect, recognition of the patient as the expert on his/her current life situation, and the need for both parties to engage in the process of lifestyle change. PRACTICE IMPLICATIONS: A structured lifestyle program with five counselling sessions within primary care was experienced as helpful for enhanced lifestyle habits and considered to be feasible by both patients and CHNs.

User-centered requirements engineering to manage the fuzzy front-end of open innovation in e-health: A study on support systems for seniors' physical activity.

BACKGROUND: Although e-health potentials for improving health systems in their safety, quality and efficiency has been acknowledged, a large gap between the postulated and empirically demonstrated benefits of e-health technologies has been ascertained. E-health development has classically been technology-driven, often resulting in the design of devices and applications that ignore the complexity of the real-world setting, thus leading to slow diffusion of innovations to care. Therefore, e-health innovation needs to consider the mentioned complexity already from the start. The early phases of innovation, fuzzy front-end (FFE) defined as "the period between when an opportunity is first considered and when an idea is judged ready for development" has been identified to have the highest impact on the innovation process and its outcome. The FFE has been recognized as the most difficult stage to manage in the innovation process as it involves a high degree of uncertainty. Such a phase becomes even more difficult when different sectors and organizations are involved. Therefore, effective methods for involving different organizations and user groups in the FFE of innovation are needed. OBJECTIVE: The aim of this study was to manage the FFE of a collaborative, open innovation (OI) process, to define a software system supporting seniors' physical activity (PA) by applying a framework of methods from software requirements engineering (RE) to elicit and analyze needs and requirements of users and stakeholders, as well as the context in which the system should be used. METHODS: Needs and requirements of three future user groups were explored through individual- and focus group interviews. Requirements were categorized and analyzed in a workshop with a multidisciplinary team: a system overview was produced by conceptual modelling using elicited functional requirements; high-level non-functional requirements were negotiated and prioritized. Scenario descriptions of system's supportive roles in different phases of a behavioral change process were developed. RESULTS: User-centered RE methods were successfully used to define a system and a high-level requirements description was developed based on needs and requirements from three identified user groups. The system aimed to support seniors' motivation for PA and contained four complementary sub-systems. The outcome of the study was a Concept of Operations (ConOps) document that specified the high-level system requirements in a way that was understandable for stakeholders. This document was used both to identify and recruit suitable industrial partners for the following open innovation development and to facilitate communication and collaboration in the innovation process. CONCLUSIONS: Applying software RE methods and involving user groups in the early phases of OI can contribute to the development of new concepts that meet complex real-world requirements. Different user groups can complement each other in conveying needs and requirements from which systems can be designed. Empirical studies applying and exploring different methods used to define new e-health solutions can contribute with valuable knowledge about handling innovation FFE.

Effectiveness of web-based and mobile health interventions designed to enhance adherence to physical activity for people with inflammatory arthritis: a systematic review.

OBJECTIVE: The aim of this systematic review was to assess the evidence from randomized controlled trials (RCTs) and cohort studies for the effectiveness of digital interventions designed to enhance adherence to physical activity (PA) for people with inflammatory arthritis and describe the intervention content using established coding criteria. METHODS: Six electronic databases were searched for published and unpublished studies. Independent data extraction and quality assessment (Cochrane risk of bias II or ROBINS-I) were conducted by two reviewers. The primary outcome was self-reported adherence to PA post-intervention. Secondary outcomes included self-reported adherence to PA at other time points, level of PA or engagement with intervention at any follow-up time point. Intervention content was assessed using the Consensus on Exercise Reporting Template and the Behaviour Change Techniques Taxonomy version 1. RESULTS: From 11 136 citations, four moderate risk of bias studies (three RCTs and one cohort study) including 1160 participants with RA or JIA were identified. Owing to heterogeneity of outcomes, a narrative synthesis was conducted. Only one RCT reported a small between-group difference in adherence to PA [mean difference (95% CI) -0.46 (-0.82, -0.09)] in favour of the intervention. There were no between-group differences in any secondary outcomes. Interventions included between 3 and 11 behaviour change techniques but provided minimal information on exercise prescription. CONCLUSION: There is currently limited moderate-quality evidence available to provide confident evaluation of the effect of web-based and mobile health interventions on adherence to PA or level of PA post-intervention in people with inflammatory arthritis.

Integrating Key User Characteristics in User-Centered Design of Digital Support Systems for Seniors' Physical Activity Interventions to Prevent Falls: Protocol for a Usability Study.

BACKGROUND: The goal of user-centered design (UCD) is to understand the users' perspective and to use that knowledge to shape more effective solutions. The UCD approach provides insight into users' needs and requirements and thereby improves the design of the developed services. However, involving users in the development process does not guarantee that feedback from different subgroups of users will shape the development in ways that will make the solutions more useful for the entire target user population. OBJECTIVE: The aim of this study was to describe a protocol for systematic analysis and prioritization of feedback from user subgroups in the usability testing of a digital motivation support for fall-preventive physical activity (PA) interventions in seniors (aged 65 years and older). This protocol can help researchers and developers to systematically exploit feedback from relevant user subgroups in UCD. METHODS: Gender, PA level, and level of technology experience have been identified in the literature to influence users' experience and use of digital support systems for fall-preventive PA interventions in seniors. These 3 key user characteristics were dichotomized and used to define 8 (ie, 23) possible user subgroups. The presented method enables systematic tracking of the user subgroups' contributions in iterative development. The method comprises (1) compilation of difficulties and deficiencies in the digital applications identified in usability testing, (2) clustering of the identified difficulties and deficiencies, and (3) prioritization of deficiencies to be rectified. Tracking user subgroup representation in the user feedback ensures that the development process is prioritized according to the needs of different subgroups. Mainly qualitative data collection methods are used. RESULTS: A protocol was developed to ensure that feedback from users representing all possible variants of 3 selected key user characteristics (gender, PA level, and level of technology experience) is considered in the iterative usability testing of a digital support for seniors' PA. The method was applied in iterative usability testing of two digital applications during spring/summer 2018. Results from the study on the users' experiences and the iterative modification of the digital applications are expected to be published during 2021. CONCLUSIONS: Methods for systematic collection, analysis, and prioritization of feedback from user subgroups might be particularly important in heterogenous user groups (eg, seniors). This study can contribute to identifying and improving the understanding of potential differences between user subgroups of seniors in their use and experiences of digital support for fall-preventive PA interventions. This knowledge may be relevant for developing digital support systems that are appropriate, useful, and attractive to users and for enabling the design of digital support systems that target specific user subgroups (ie, tailoring of the support). The protocol needs to be further used and investigated in order to validate its potential value. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR1-10.2196/20061.

How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study.

BACKGROUND: Worldwide, the number of people with Parkinson's disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. OBJECTIVE: This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. METHODS: Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. RESULTS: The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). CONCLUSIONS: This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/11278.

"It's up to me": the experience of patients at high risk of cardiovascular disease of lifestyle change.

OBJECTIVE: Despite knowledge of the effect of lifestyle changes in preventing cardiovascular disease, a large proportion of people have unhealthy lifestyle habits. The aim of our study is a) to explore the experiences of participants at high risk of CVD of lifestyle change after participation in a one-year structured lifestyle counselling programme and b) to link the techniques and strategies used by the participants to the processes of the transtheoretical model of behaviour change (TTM). DESIGN: A qualitative explorative design was used to collect data on participants' experiences. An abductive content analysis was conducted using the processes within TTM for the deductive analysis. SETTING: Patients that participated in a one-year lifestyle counselling programme in Swedish primary care, were interviewed. SUBJECTS: Eight men and eight women, aged 51-75 years, diagnosed with hypertension or type 2 diabetes mellitus. MAIN OUTCOME MEASURES: Experiences of lifestyle change in patients at high cardiovascular risk. RESULTS: The analysis yielded four dimensions that assisted lifestyle change: 'The value of knowledge', 'Taking control', 'Gaining trust in oneself' and 'Living with a chronic condition'. The theme 'It's up to me' illustrated that lifestyle change was a personal matter and responsibility. CONCLUSION: Enhanced knowledge, self-efficacy, support from others and the individual's insight that it was his/her own decisions and actions that mattered were core factors to adopt healthier lifestyle habits. Practice Implications: Although lifestyle change is a personal matter, the support provided by primary healthcare professionals and significant others is essential to increase self-efficacy and motivate lifestyle change. Key Points A large proportion of people persist to have unhealthy lifestyle habits also after receiving a diagnosis of hypertension or diabetes mellitus, type 2. This study contributes to enhanced knowledge of how patients experience lifestyle change after counselling in primary care. Both experiential and behavioural processes as defined by the transtheoretical model of behaviour change were used to make lifestyle changes by the patients in this study.

Technology-Based Motivation Support for Seniors' Physical Activity-A Qualitative Study on Seniors' and Health Care Professionals' Views.

This paper investigates seniors' and health care professionals' (HCPs) perceptions on needed contributions and qualities of digital technology-based motivation support for seniors' physical activity (PA). Seniors and HCPs expressed their views in focus groups, which were analyzed separately by inductive content analysis. Similarities and differences in seniors' and HCPs' views were identified through thematic analysis of qualitative results from both focus groups. This article's main findings are that both seniors and HCPs believed digital technology should support and make PA more enjoyable in ways to strengthen seniors' control and well-being. However, seniors emphasized support for social interaction, while HCPs also requested support for increasing seniors' insight into PA and for facilitating their dialogue with seniors. Conclusions to be drawn are that seniors and HPCs shared overall views on digital technology's main contributions but had different perspectives on how those contributions could be obtained. This highlights the importance of the early identification of user groups and exploration of their different needs when developing new solutions. Moreover, seniors' and HCPs' perceptions included aspects relevant for personal motivation, technology acceptance, and PA behavioral change according to self-determination theory, unified theory of acceptance and use of technology, and behavioral change techniques for increasing PA.

Co-Designing an eHealth Service for the Co-Care of Parkinson Disease: Explorative Study of Values and Challenges.

BACKGROUND: The need for services to support patient self-care and patient education has been emphasized for patients with chronic conditions. People with chronic conditions may spend many hours per year in health and social care services, but the majority of time is spent in self-care. This has implications in how health care is best organized. The term co-care specifically stresses the combination of health care professionals' and patients' resources, supported by appropriate (digital) tools for information exchange, to achieve the best possible health outcomes for patients. Developers of electronic health (eHealth) services need to consider both parties' specific needs for the service to be successful. Research on participants' experiences of participating in co-design sessions is scarce. OBJECTIVE: The aim of this study was to describe different stakeholders' (people with chronic conditions, health care professionals, and facilitators) overall experiences of participating in co-design workshops aimed at designing an eHealth service for co-care for Parkinson disease, with a particular focus on the perceptions of values and challenges of co-design as well as improvement suggestions. METHODS: We conducted 4 half-day co-design workshops with 7 people with Parkinson disease and 9 health care professionals. Data were collected during the workshop series using formative evaluations with participants and facilitators after each workshop, researchers' diary notes throughout the co-design process, and a Web-based questionnaire after the final workshop. Quantitative data from the questionnaire were analyzed using descriptive statistics. Qualitative data were triangulated and analyzed inductively using qualitative content analysis. RESULTS: Quantitative ratings showed that most participants had a positive general experience of the co-design workshops. Qualitative analysis resulted in 6 categories and 30 subcategories describing respondents' perceptions of the values and challenges of co-design and their improvement suggestions. The categories concerned (1) desire for more stakeholder variation; (2) imbalance in the collaboration between stakeholders; (3) time investment and commitment paradox; (4) desire for both flexibility and guidance; (5) relevant workshop content, but concerns about goal achievement; and (6) hopes and doubts about future care. CONCLUSIONS: Based on the identified values and challenges, some paradoxical experiences were revealed, including (1) a desire to involve more stakeholders in co-design, while preferring to work in separate groups; (2) a desire for more preparation and discussions, while the required time investment was a concern; and (3) the experience that co-design is valuable for improving care, while there are doubts about the realization of co-care in practice. The value of co-design is not mainly about creating new services; it is about improving current practices to shape better care. The choice of methods needs to be adjusted to the stakeholder group and context, which will influence how they experience the process and outcomes of co-design.

Mobile internet service for self-management of physical activity in people with rheumatoid arthritis: evaluation of a test version.

OBJECTIVES: Life-long adherence to health-enhancing physical activity (PA) is a major challenge for people with rheumatoid arthritis (RA). Our aim was to evaluate the utilisation of and experiences with a RA-specific, mobile internet PA support service, 'tRAppen', developed through a co-design process. METHODS: 28 participants with RA formed 3 web communities and tested tRAppen for 6 weeks. A mixed-method design was used to combine different types of data. Log data and questionnaire data were analysed quantitatively, while data from telephone interviews were analysed with a directed content analysis. RESULTS: 25 of the 28 participants used tRAppen. Log data indicated that a majority of them registered their PA, sent likes and posted comments to peers, set personal goals and made exercise plans. tRAppen was rated as easy and fun to use, and fairly informative and supportive for PA, and was highly recommended for people with RA. The interview analysis resulted in the following 6 categories describing the utilisation of and experiences with tRAppen: (1) experiences in general, (2) feasibility of features, (3) value as support for PA, (4) enjoyment, (5) ideas for improvements and (6) additional factors. CONCLUSIONS: tRAppen is the first co-designed mobile internet service developed specifically for the self-management of PA in people with RA. The results are promising and indicate that tRAppen may be useful for supporting a physically active lifestyle in a subpopulation at certain risk of poor health. It will now be revised, launched and continuously updated in an iterative process involving its future users.

A Mobile Internet Service for Self-Management of Physical Activity in People With Rheumatoid Arthritis: Challenges in Advancing the Co-Design Process During the Requirements Specification Phase.

BACKGROUND: User involvement in the development of health care services is important for the viability, usability, and effectiveness of services. This study reports on the second step of the co-design process. OBJECTIVE: The aim was to explore the significant challenges in advancing the co-design process during the requirements specification phase of a mobile Internet service for the self-management of physical activity (PA) in rheumatoid arthritis (RA). METHODS: A participatory action research design was used to involve lead users and stakeholders as co-designers. Lead users (n=5), a clinical physiotherapist (n=1), researchers (n=2) with knowledge in PA in RA and behavioral learning theories, an eHealth strategist (n=1), and an officer from the patient organization (n=1) collaborated in 4 workshops. Data-collection methods included video recordings and naturalistic observations. RESULTS: The inductive qualitative video-based analysis resulted in 1 overarching theme, merging perspectives, and 2 subthemes reflecting different aspects of merging: (1) finding a common starting point and (2) deciding on design solutions. Seven categories illustrated the specific challenges: reaching shared understanding of goals, clarifying and handling the complexity of participants' roles, clarifying terminology related to system development, establishing the rationale for features, negotiating features, transforming ideas into concrete features, and participants' alignment with the agreed goal and task. CONCLUSIONS: Co-designing the system requirements of a mobile Internet service including multiple stakeholders was a complex and extensive collaborative decision-making process. Considering, valuing, counterbalancing, and integrating different perspectives into agreements and solutions (ie, the merging of participants' perspectives) were crucial for moving the process forward and were considered the core challenges of co-design. Further research is needed to replicate the results and to increase knowledge on key factors for a successful co-design of health care services.

Development of a web-based and mobile app to support physical activity in individuals with rheumatoid arthritis: results from the second step of a co-design process.

BACKGROUND: Long-term adherence to physical activity recommendations remains challenging for most individuals with rheumatoid arthritis (RA) despite evidence for its health benefits. OBJECTIVE: The aim of this study was to provide basic data on system requirement specifications for a Web-based and mobile app to self-manage physical activity. More specifically, we explored the target user group, features of the future app, and correlations between the system requirements and the established behavior change techniques (BCTs). METHODS: We used a participatory action research design. Qualitative data were collected using multiple methods in four workshops. Participants were 5 individuals with RA, a clinical physiotherapist, an officer from the Swedish Rheumatism Association, a Web designer, and 2 physiotherapy researchers. A taxonomy was used to determine the degree of correlation between the system requirements and established BCTs. RESULTS: Participants agreed that the future Web-based and mobile app should be based on two major components important for maintaining physical activity: (1) a calendar feature for goal setting, planning, and recording of physical activity performance and progress, and (2) a small community feature for positive feedback and support from peers. All system requirements correlated with established BCTs, which were coded as 24 different BCTs. CONCLUSIONS: To our knowledge, this study is the first to involve individuals with RA as co-designers, in collaboration with clinicians, researchers, and Web designers, to produce basic data to generate system requirement specifications for an eHealth service. The system requirements correlated to the BCTs, making specifications of content and future evaluation of effectiveness possible.

Lead users' ideas on core features to support physical activity in rheumatoid arthritis: a first step in the development of an internet service using participatory design.

BACKGROUND: Despite the growing evidence of the benefits of physical activity (PA) in individuals with rheumatoid arthritis (RA), the majority is not physically active enough. An innovative strategy is to engage lead users in the development of PA interventions provided over the internet. The aim was to explore lead users' ideas and prioritization of core features in a future internet service targeting adoption and maintenance of healthy PA in people with RA. METHODS: Six focus group interviews were performed with a purposively selected sample of 26 individuals with RA. Data were analyzed with qualitative content analysis and quantification of participants' prioritization of most important content. RESULTS: Six categories were identified as core features for a future internet service: up-to-date and evidence-based information and instructions, self-regulation tools, social interaction, personalized set-up, attractive design and content, and access to the internet service. The categories represented four themes, or core aspects, important to consider in the design of the future service: (1) content, (2) customized options, (3) user interface and (4) access and implementation. CONCLUSIONS: This is, to the best of our knowledge, the first study involving people with RA in the development of an internet service to support the adoption and maintenance of PA.Participants helped identifying core features and aspects important to consider and further explore during the next phase of development. We hypothesize that involvement of lead users will make transfer from theory to service more adequate and user-friendly and therefore will be an effective mean to facilitate PA behavior change.