Search

Chronic pelvic pain is a debilitating complex condition affecting men and women, but the knowledge gaps are salient. The condition impacts somatic, sexual, and mental health, as well as social, family, and work life. The complexity of the condition demands for a giant step away from traditional dualistic clinical approach. This commentary underpins the need to interweave multidisciplinary research within a biopsychosocial framework, as well as enhanced inclusion of the user perspective. [ABSTRACT FROM AUTHOR]

Purpose: The article reports on 20 years application of a user involvement methodology that was developed in the context of social work – the BIKVA Model. Through an analysis of its practical implementation, a novel form of action research emerges: Synthesised Action Research (SAR). Method: A scoping review of 69 practitioner reports is conducted and inductive content analysis is used. Results: The application of the BIKVA Model by practitioners reveals new variations that represent empirical translations which make the model fit better to various purposes and levels of engagement. Moreover, it highlights its application in policy areas beyond the original scope: social work. Conclusion: By identifying and elaborating the SAR contribution, the article demonstrates that considerable insights can be gained from analysing practitioners use of academic models and methodologies, providing a more nuanced understanding that can be used to enrich and nuance what was originally intended. [ABSTRACT FROM AUTHOR]

This paper explores user involvement in company practice as a method that is both contingent and transformative. Drawing on ethnographic research in a small- to medium-sized care technology company, we trace how user involvement is enacted in diverse forms to resolve, deal with, and circumvent the frictions and tensions surrounding it. While encompassing similar types of configuration work, these varying enactments differ as they selectively enroll different actants, objectives, and procedures. We refer to these peculiar enactments as occurring in shifting interstices of coalescing tensions. In so doing, we are in conversation with literature in science and technology studies studying the socio-material constitution of users and the social role of methods. We build on and extend previous arguments revolving around the effects of methods and implicit ways of designers configuring users to draw attention to the situational character of doing user involvement. In particular, we argue that investigating shifting interstices offers novel ways of analyzing and thinking about the spatialities, temporalities, frictions, and objects involved in method practices, raising awareness of what it takes to momentarily "do" method this way, and not otherwise. We conclude by discussing conceptual and practical implications for understanding and remaking methods. [ABSTRACT FROM AUTHOR]

The objective of this study was to investigate the engagement between healthcare professionals and users of mental healthcare at the individual level in a mental health hospital. A qualitative research design with purposive sampling was adopted. Five audio‐recorded focus group interviews were conducted with nurses and other health professionals at a mental health hospital in Copenhagen and were explored using Fairclough's discourse analysis framework. This study shows how users can be subject to paternalistic control despite the official aim that user involvement be an integral part of the care and treatment offered. As evidenced in discussions by health professionals, the users were involved in plans based on conditions determined by the health professionals who were predominantly focused on treating diseases and enabling the users to live a life independent of professional help. Our results can contribute to dealing with the challenges of incorporating user involvement as an ideology in mental health hospitals. [ABSTRACT FROM AUTHOR]

Copyright of European Journal of Social Work is the property of Routledge and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

To examine and categorize individual outcomes after the "Intensity matters!"-program, a new, cross-professional intensive intervention for children with disabilities across Norway. 84 children and their parents/legal guardian were enrolled in this multicase study. Participants were active in defining goals, and hereby the content of the intervention. The pre-settled goals were grouped into the categories of body functions and structure, activities and participation inspired by the components of the International Classification of Functioning, Disability, and Health (ICF). The pre-settled goals were assessed pre- and post-intervention by using The Canadian Occupational Performance Measure (COPM). A clinically important change was predefined as a change ≥2 points. 1004 pre-settled goals were categorized into focus areas, where 62.4% were categorized as activity; functional mobility (n = 626). Post-intervention assessment of the COPM ratings of child performance and satisfaction showed a mean change of 3.7 (range −0.25;8.5) and 3.8 (range 0.25;10), respectively. The majority of participants in the "Intensity Matters!"-program had a clinically important change in their individual goals after only three weeks of intervention. This study supports the use of client-centered measures in rehabilitation for children with disabilities, but a further examination of long-term outcome is warranted. The "Intensity matters!"-program is a cross-professional, goal-directed, and intensive intervention with a high degree of user involvement. In a sample of 84 individual participants, this study shows that the majority of focus areas were found to be of clinically relevant improvement post intervention. Individual structured programs with high intensity in a group setting are likely to be successful for children with different health conditions, including cerebral palsy and other neurological or genetic disorders. Areas of concern formulated ahead of a three-week, intensive, goal-directed program were mainly linked to the ICF domain activity, and more specifically related to personal care and functional mobility. Rehabilitation professionals should emphasise participants' priorities and involvement of children when planning and evaluating a therapeutic intervention. [ABSTRACT FROM AUTHOR]

Abstract Background Rehabilitation is considered paramount for enhancing quality of life and reducing healthcare costs. As a result of healthcare reforms, Norwegian municipalities have been given greater responsibility for allocating rehabilitation services following discharge from hospital. Individual decision letters serve as the basis for implementing services and they have been described as information labels on the services provided by the municipality. They play an important role in planning and implementing the services in collaboration with the individual applicants. Research indicates that the implementation of policies may lead to unintended consequences, as individuals receiving municipal services perceive them as fragmented. This perception is characterised by limited user involvement and a high focus on body functions. The aim of this study was to examine how municipal decision letters about service allocation incorporate the recommendations made in the official national guideline and reflect a holistic approach to rehabilitation, coordination and user involvement for individuals with comprehensive needs. Methods The decision letters of ten individuals with moderate to severe brain injury allocating rehabilitation services in two municipalities were examined. It was assessed whether the content was in accordance with the authorities’ recommendations, and a discourse analysis was conducted using four tools adapted from an established integrated approach. Results The letters primarily contained standard texts concerning legal and administrative regulations. They were predominantly in line with the official guideline to municipal service allocation. From a rehabilitation perspective, the focus was mainly on medically oriented care, scarcely referring to psychosocial needs, activity, and participation. The intended user involvement seemed to vary between active and passive status, while the coordination of services was given limited attention. Conclusions The written decision letters did fulfil legal and administrative recommendations for service allocation. However, they did not fulfil their potential to serve as a means of conveying rehabilitation issues, such as specification of the allocated services, a holistic approach to health, coordination, or the involvement of users in decision processes. These elements must be incorporated throughout the allocation process if the policies are to be implemented as intended. Findings can have international relevance for discussions between clinicians and policy makers.

Abstract\nIMPLICATIONS FOR REHABILITATIONAssistive technology has great potential to help individuals living with chronic health conditions, however devices often fail to align with the unique requirements of users. These results in device abandonment and missed opportunities to benefit people. This exploratory study aims to evaluate the short and longer-term satisfaction, psychological benefit, use and resources involved in co-designed customised assistive devices within a current healthcare service. Individuals with chronic health conditions identified daily living challenges. Eleven individuals completed the trial and were involved throughout the design process. Outcome measures evaluated the impact of the devices provided, healthcare utilisation, help required, and resources used. Nineteen custom assistive devices were produced for twenty-four challenges in daily living identified. At 3-months, eighteen devices were still being used. Daily challenges had become easier for individuals to complete and required less help from informal carers. Individuals were satisfied with the devices and service provided. Improvements in competence, adaptability and self-esteem were sustained long-term. The average clinician’s time required to produce a device was 5 h 55 min, with an average cost of £203.79. People with chronic conditions were able to benefit from the co-design process resulting in satisfaction and long-term utilisation of the device, and positive psycho-social benefits. The costs associated with embedding this approach in a healthcare service were calculated. Scaling up the co-design process reduced the associated costs per device compared to previous work. Further work is required to evaluate co-designing across larger samples and explore opportunities to further improve the cost-efficiency.By involving users in the design process, healthcare professionals can create devices that better meet users’ expectations, preferences and functional needs, thereby increasing overall usability, satisfaction and utilisation long-term of the devices.Incorporating the individual’s perspective and needs into the design process enabled users to better understand the solutions that could be produced and thus encouraged users to identify other challenges in daily living they faced where an assistive device could assist them.Through being provided with devices to support them with specific challenges they faced, individuals were able to perform more tasks independently, reducing the need for help from family members and informal carers for the associated tasks.Re-evaluating the solutions generated with other previous research may help identify common design solutions and features to enable further scaling-up of this co-design approachBy involving users in the design process, healthcare professionals can create devices that better meet users’ expectations, preferences and functional needs, thereby increasing overall usability, satisfaction and utilisation long-term of the devices.Incorporating the individual’s perspective and needs into the design process enabled users to better understand the solutions that could be produced and thus encouraged users to identify other challenges in daily living they faced where an assistive device could assist them.Through being provided with devices to support them with specific challenges they faced, individuals were able to perform more tasks independently, reducing the need for help from family members and informal carers for the associated tasks.Re-evaluating the solutions generated with other previous research may help identify common design solutions and features to enable further scaling-up of this co-design approach [ABSTRACT FROM AUTHOR]

Background: The design and development of patient-centered digital health solutions requires user involvement, for example through usability testing. Although there are guidelines for conducting usability tests, there is a lack of knowledge about the technical, human, and organizational factors that influence the success of the tests. Objective: To summarize the success factors of usability testing in the context of patient-centered digital health solutions. Method: We considered three case studies and collected experiences related to time management, relevance of results and challenges encountered. Results: Success factors relate to participant privacy and data protection, test environment setup, device and application readiness, user comfort and accessibility, test tools and procedures, and adaptability to user limitations. Conclusions: Small organizational and technical details can have a big impact on the outcome of a usability test. Considering the aspects mentioned in this paper will not only save resources but also the trust of the participating patients. [ABSTRACT FROM AUTHOR]

Background: Rehabilitation is considered paramount for enhancing quality of life and reducing healthcare costs. As a result of healthcare reforms, Norwegian municipalities have been given greater responsibility for allocating rehabilitation services following discharge from hospital. Individual decision letters serve as the basis for implementing services and they have been described as information labels on the services provided by the municipality. They play an important role in planning and implementing the services in collaboration with the individual applicants. Research indicates that the implementation of policies may lead to unintended consequences, as individuals receiving municipal services perceive them as fragmented. This perception is characterised by limited user involvement and a high focus on body functions. The aim of this study was to examine how municipal decision letters about service allocation incorporate the recommendations made in the official national guideline and reflect a holistic approach to rehabilitation, coordination and user involvement for individuals with comprehensive needs. Methods: The decision letters of ten individuals with moderate to severe brain injury allocating rehabilitation services in two municipalities were examined. It was assessed whether the content was in accordance with the authorities' recommendations, and a discourse analysis was conducted using four tools adapted from an established integrated approach. Results: The letters primarily contained standard texts concerning legal and administrative regulations. They were predominantly in line with the official guideline to municipal service allocation. From a rehabilitation perspective, the focus was mainly on medically oriented care, scarcely referring to psychosocial needs, activity, and participation. The intended user involvement seemed to vary between active and passive status, while the coordination of services was given limited attention. Conclusions: The written decision letters did fulfil legal and administrative recommendations for service allocation. However, they did not fulfil their potential to serve as a means of conveying rehabilitation issues, such as specification of the allocated services, a holistic approach to health, coordination, or the involvement of users in decision processes. These elements must be incorporated throughout the allocation process if the policies are to be implemented as intended. Findings can have international relevance for discussions between clinicians and policy makers. [ABSTRACT FROM AUTHOR]

Our lives have drastically changed during the COVID-19 pandemic. Information and communications technologies (ICTs) have replaced other media as the primary means of work, communication, expression, and entertainment throughout this time. As society's reliance on technology increases throughout and possibly after the pandemic, it is critical to fully understand the multifaceted nature of engagement with technology and develop reliable instruments capable of accurately evaluating its processual nature. Therefore, this study aimed at describing and psychometrically validating a novel instrument to measure the dynamics of engagement with technology, namely the Technology Engagement Scale (TES). Data were collected from a representative sample of 2021 participants in Italy. Results from both the confirmatory analysis and the Rasch model suggested the mono-dimensionality of the 5-item TES. Moreover, empirical ordinal alpha indicated a very good internal consistency. Findings provide also solid evidence for the convergent validity of the proposed instrument. Finally, it emerged that TES levels were able to predict the frequency of online activities during the COVID-19 pandemic. Globally, these findings suggest that the TES could be considered a reliable and valid tool, able to evaluate the complex process of engagement with technology in a simple, quick, and easy-to-administer manner. [ABSTRACT FROM AUTHOR]

Copyright of Cuadernos del Centro de Estudios de Diseño y Comunicación is the property of Cuadernos del Centro de Estudios de Diseno y Comunicacion and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Abstract Introduction Human T‐cell lymphotropic virus type 1 (HTLV‐1) is a chronic infection affecting 5–10 million people worldwide. Ten percent develop HTLV‐1‐associated diseases, and 3%–5% develop HTLV‐1‐associated myelopathy (HAM)/tropical spastic paraparesis. Low health‐related quality of life (HRQoL) is a significant concern for those with HTLV‐1, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV‐1 health service provision. Methods Participants recruited through HTLV‐1 clinics in England attended six 90‐min virtual workshops over 10 months, and two 60‐min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video‐recorded with consent, transcribed verbatim and thematically analysed. Using consensus voting rounds, participants individually ranked their top six and then collectively their top three research priorities from the themes inferred from the analysis. A final feedback session explored the experiences of participating in the workshops. Findings Twenty‐seven people with HTLV‐1 engaged with the workshops with up to 22 participants attending each meeting. The majority were diagnosed with HAM (n = 22). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued being asked to set research priorities that directly addressed their needs and enjoyed the workshops. They stressed the importance of patient advocates for promoting research that positively impacts everyday life. Conclusion This is the first of this type of research engagement with people with HTLV‐1 in the United Kingdom. Participants identified several avenues of investigation that could lead to improvements in healthcare services and HRQoL. Participants believed the workshops signified the start of a conversation to progress person‐centred and meaningful research in HTLV‐1. Patient or Public Contribution People living with HTLV‐1 were involved in the iterative design, conduct, analysis, writing and dissemination of this project through the patient involvement workshops. As a result of this engagement, a patient led advisory group has been set up to assist with the dissemination of the findings.

This study sought to explore the meaning that people with severe mental illnesses attribute to e‐health solutions regarding user involvement and encounters with healthcare professionals. A qualitative design with a social phenomenological approach was applied, and data were collected via repeat interviews. Using a purposive sampling strategy, eight people with severe mental illness were interviewed two times between August 2021 to May 2022, at three different treatment sites in southern Denmark. To be included, participants needed to be 18–65 years of age, diagnosed with severe mental illness (schizophrenia, bipolar disorder, or depression), and using an e‐health solution in collaboration with a health professional. The interviews lasted between 20 and 70 min and were audio recorded and then transcribed. The data were analysed with Braun and Clarke's 6‐step thematic analysis. Participants experienced the use of an e‐health solution as helpful for structuring their everyday lives, and e‐health used together with healthcare professionals was considered to have a positive impact on the collaboration. The participants experienced feeling involved and in control when e‐health solutions were used, which engaged them in their treatment. Furthermore, the participants found it important to have had some in‐person meetings with healthcare professionals to build trust before the e‐health solutions could be implemented successfully. E‐health solutions used in collaboration with a trusted healthcare professional whom the participants had met in person tended to affect treatment engagement positively. [ABSTRACT FROM AUTHOR]

Introduction: As patient and public involvement (PPI) in research has become increasingly common, research‐based recommendations on its principles and impacts have been established. The specifics of conducting PPI are likely to differ when involving different groups. Family/informal carers for those with health conditions or disabilities have a lot to contribute to research, but instances of their involvement have yet to be reviewed. Objective: To systematically review and synthesize studies where family/informal carers have been involved in the research process, to develop an understanding of the benefits, barriers and facilitating factors. Methods: A search of five electronic databases was conducted using a combination of terms relating to carers, involvement and research. A grey literature search, expert consultation and hand‐searching were also used. Following screening, data extraction and quality assessment, a narrative synthesis incorporating thematic analysis was conducted. Findings: A total of 55 studies met the inclusion criteria, with diverse design and participatory approaches. Four themes were identified, relating to the outcomes, challenges, and practicalities of involving carers: (re) building relationships with carers; carers as equals not afterthoughts; carers have unique experiences; carers create change. Full involvement throughout the research was not always possible, due to barriers from the research world and responsibilities of the caring role. The literature demonstrated ways for carers to contribute in ways that suited them, maximizing their impact, while attending to relationships and power imbalances. Conclusion: By summarizing the reported instances of carer involvement in research, this review brings together different examples of how successful research partnerships can be built with carers, despite various challenges. Carers are a heterogeneous group, and participatory approaches should be tailored to specific situations. Wider understanding of the challenges of conducting empowering research with carers, and the resources required to address these, are needed. Patient and Public Involvement: The initial findings and themes were presented to a group of carers who had been involved in research and whose reflections informed the final synthesis. [ABSTRACT FROM AUTHOR]

Background: Psychosocial interventions such as psychoeducation are increasingly being used to treat adult ADHD, both as an alternative and as a supplement to pharmacotherapy. A thorough overview of the literature on psychoeducation for adult ADHD is lacking. The objectives of this scoping review were therefore to identify the characteristics of psychoeducation interventions designed for adults with ADHD, examine how the patient experience or perspective is considered during the intervention's development and implementation, determine the typical themes covered, and explore how 'psychoeducation' is defined in these interventions. Methods: A comprehensive search was performed to identify records in MEDLINE, Embase, PsycINFO, Web of Science, Cochrane CENTRAL, AMED, and ClinicalTrials.gov. Two or more reviewers were included in every step of the screening process and the final selection of included studies. The Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist (Supplementary Material 1) was used to report the results, and the framework developed by Arksey and O'Malley was used as a guide throughout the scoping process. Results: A total of 2121 records were identified through the literature search. After screening and full-text analysis, ten studies were included for final analysis. Most studies were conducted in Europe and followed a group format. Seven main themes were identified: Information about the diagnosis, treatment options, somatic health and ADHD, the insider perspective, ADHD and social life, coping and psychological skills, and ADHD and work. There was significant overlap in themes covered, but coverage of each theme varied. Themes deemed important by newer research, such as sexuality and gender-specific issues, were missing. Only one intervention involved patients in its development and implementation, and two interventions involved family members. There was variation in how psychoeducation was defined in the included studies, and the implications of this are discussed. Conclusion: The literature on psychoeducation for adult ADHD is not ready for any systematic effect estimation. Before such estimations are conducted, a shared understanding and definition of psychoeducation are needed. The involvement of end users in the development and delivery of interventions may aid reach this goal but results from this review indicate that such practices are rare. [ABSTRACT FROM AUTHOR]

Aims: User involvement is pivotal for health development, but there are significant gaps in our understanding of the concept. The Copenhagen Diabetes Consensus on User Involvement in Diabetes Care, Prevention and Research (CODIAC) was established to address these gaps, share knowledge and develop best practices. Methods: A literature review of user involvement was undertaken in diabetes care, prevention and research. Moreover, a Group Concept Mapping (GCM) survey synthesized the knowledge and opinions of researchers, healthcare professionals and people with diabetes and their carers to identify gaps between what is important for user involvement and what is being done in practice. Finally, a consensus conference discussed the main gaps in knowledge and practice while developing plans to address the shortcomings. Results: The literature review demonstrated that user involvement is an effective strategy for diabetes care, prevention and research, given the right support and conditions, but gaps and key challenges regarding the value and impact of user involvement approaches were found. The GCM process identified 11 major gaps, where important issues were not being sufficiently practised. The conference considered these gaps and opportunities to develop new collaborative initiatives under eight overall themes. Conclusions: User involvement is effective and adds value to diabetes care, prevention and research when used under the right circumstances. CODIAC developed new learning about the way in which academic and research knowledge can be transferred to more practice‐oriented knowledge and concrete collaborative initiatives. This approach may be a potential new framework for initiatives in which coherence of process can lead to coherent outputs. [ABSTRACT FROM AUTHOR]

Co-design involves engaging with the end-user in the design process and may help reduce the barriers to assistive technology use. Previous research has used co-design in the provision of assistive technology, but no research has looked at applying it within a healthcare setting. This service evaluation examines the use of co-design in providing customized assistive devices within a current UK healthcare based Rehabilitation Engineering department. This evaluation reports on three case studies. Individuals identified a range of challenges in daily living. The participants worked with the clinician in trialling prototypes and providing feedback to develop custom devices. A mixed-method approach of questionnaires and semi-structured interviews were used to evaluate the devices provided and the co-design approach. The resources required to provide the device were also calculated. Five different devices were developed, which were able to overcome the challenges identified. Results indicated participants were satisfied with both the devices and service provided. Participants expressed other benefits including increased independence, increased positive emotions and reduced mental load. Participants indicated they liked being involved in the design process and their feedback helped ensure the devices were customized to their needs. The use of co-design was able to produce customized assistive device that met the needs of the individuals within a current healthcare service. Further work is required to assess the feasibility of utilising a co-design approach for the provision of other custom assistive technology in the future and explore if this can overcome the barriers to assistive technology use. End-user involvement, the design process can help enable customized assistive devices to be provided that better meet the user's needs. The custom assistive devices provided not only helped the individuals overcome the challenges identified but had wider reaching benefits for the individuals physical and mental health and wellbeing. End-users valued being able to input into the co-design process and working closely with the clinician in developing the device. [ABSTRACT FROM AUTHOR]

OBJECTIVES: To disseminate the pilot experience with involving user representatives in the work of teams evaluating the quality of social services according to the Social Services Act. THEORETICAL BASE: The study builds upon the concept of valorisation of user representatives' social roles through their participation in the quality evaluation teams and valorisation of their experiential knowledge for better delivering of social services. METHODS: Context-based analysis and synthesis of available data sources of the pilot project conducted within the national project Quality of Social Services. OUTCOMES: Despite the mostly positive reflections of the stakeholders on the involvement of user representatives in evaluation teams, the pilot project indicated as yet their unclear status, expectations on competences, tasks and working model. Therefore, the question of institutionalizing the involvement of user representatives in evaluation teams (from November 2022 inspection teams) remains open even after termination of the pilot project. SOCIAL WORK IMPLICATIONS: Contribute to raising awareness and education of all segments of society, including user representatives, on what their active involvement in social services should mean, how it should contribute to improving the quality of social services, and what conditions should be created for it. [ABSTRACT FROM AUTHOR]

To arrive at viable eHealth applications, it is important that future users are involved in research projects. In practice, however, it is difficult to involve potential users and keep them involved. In a multiple-case study, we investigate ten eHealth projects in which design researchers and healthcare researchers worked together. We focus on how they involved potential users and kept them involved. Both domains have a rich tradition of involving potential users and see their involvement of potential (future) users in the early stages of innovation as essential. Therefore it is interesting to investigate projects in which design researchers and healthcare researchers intensively work together. We discovered seven strategies to promote the involvement of potential users in eHealth research projects: (1) use research methods based on building personal relationships; (2) build trust before introducing research methods; (3) facilitate the preconditions around the moments of involvement; (4) facilitate by introducing a prototype as a boundary object; (5) choose the method that fits the research context; (6) integrate the values behind the eHealth tool into the research method; (7) involve proxies instead of the potential users. These strategies may guide future projects where design researchers and healthcare researchers work together with potential users. [ABSTRACT FROM AUTHOR]

Introduction: Human T‐cell lymphotropic virus type 1 (HTLV‐1) is a chronic infection affecting 5–10 million people worldwide. Ten percent develop HTLV‐1‐associated diseases, and 3%–5% develop HTLV‐1‐associated myelopathy (HAM)/tropical spastic paraparesis. Low health‐related quality of life (HRQoL) is a significant concern for those with HTLV‐1, and little is known about how it impacts daily life or what patients need from healthcare services. To address this, we report on patient involvement workshops aimed at identifying research priorities for HTLV‐1 health service provision. Methods: Participants recruited through HTLV‐1 clinics in England attended six 90‐min virtual workshops over 10 months, and two 60‐min consolidation workshops. Content developed iteratively from topic focussed group discussions. All workshops were video‐recorded with consent, transcribed verbatim and thematically analysed. Using consensus voting rounds, participants individually ranked their top six and then collectively their top three research priorities from the themes inferred from the analysis. A final feedback session explored the experiences of participating in the workshops. Findings: Twenty‐seven people with HTLV‐1 engaged with the workshops with up to 22 participants attending each meeting. The majority were diagnosed with HAM (n = 22). The top three research priorities were identified as understanding disease progression, psychosocial wellbeing, and information and knowledge. Participants valued being asked to set research priorities that directly addressed their needs and enjoyed the workshops. They stressed the importance of patient advocates for promoting research that positively impacts everyday life. Conclusion: This is the first of this type of research engagement with people with HTLV‐1 in the United Kingdom. Participants identified several avenues of investigation that could lead to improvements in healthcare services and HRQoL. Participants believed the workshops signified the start of a conversation to progress person‐centred and meaningful research in HTLV‐1. Patient or Public Contribution: People living with HTLV‐1 were involved in the iterative design, conduct, analysis, writing and dissemination of this project through the patient involvement workshops. As a result of this engagement, a patient led advisory group has been set up to assist with the dissemination of the findings. [ABSTRACT FROM AUTHOR]

Abstract Background Video consultations has been suggested to lower the threshold for child and adolescent mental healthcare treatment. This study explores how young people receiving child welfare services experience video consultations in child and adolescent mental healthcare. The study is part of a larger Norwegian study of access to health services for this target group. Methods The study has a mixed methods design including qualitative interviews and a quantitative survey, with young people receiving child welfare services. The qualitative interviews included 10 participants aged 15–19. The survey included 232 participants aged 16–24 of which 36 reported having received video consultations in mental healthcare. The interviews were analysed using thematic analysis. The survey data was presented as frequencies to clarify the distribution of positive and negative perceptions of video consultation. Results The results show that the participants experienced video consultations as more superficial and less binding, compared to in-person sessions. They raised concerns of the therapeutic relationship, however some found it easier to regulate closeness and distance. In the survey several reported that their relationship with the therapist got worse, and that it was much more difficult to talk on screen. Moreover, a large proportion (42%) claimed that video consultations did not fit their treatment needs overall. However, a minority of the participants found it easier to talk to the therapist on screen. Conclusions The study reveals important weaknesses and disadvantages of online therapy as experienced by young people receiving child welfare services. It is particularly worrying that their criticism involves the relational aspects of treatment, as children receiving child welfare services often have relational experiences which make them particularly sensitive to challenges in relationships. This study shows that youth involvement in decision making of video consultations in therapy has been rare. Clinicians should be aware of these young people’s doubts regarding the quality of video consultations in child and adolescent mental health care. Further studies should examine how user involvement can be incorporated in video consultations in therapy and how this could improve experiences and the quality of video consultations.

Embedded lead users (ELUs) are firm employees who are also users of the firm’s products, holding that role most often due to their active participation in their spare time in the user domain. ELUs are able to integrate knowledge of customer needs in the innovation process based on their social contacts, user experiences, and knowledge of the innovating network or organization, for example. Due to this ability ELUs can facilitate innovation processes. The aim of this systematic literature review is to examine how according to the existing literature ELUs can contribute to different stages of the company innovation process. Three research questions are answered. 1) What kind of resources can ELUs offer for the innovation process? 2) How and based on which resources do ELUs contribute to the different stages of the innovation process? 3) What kinds of roles do ELUs have and how does their dual role in the user domain and the company influence the innovation process? Findings of the study bring new managerial perspectives on how companies can utilize ELUs in their innovation practices. In addition, by forming a holistic picture of current ELU research, this paper offers a variety of theoretical contributions in the form of holistic description of ELUs role in the innovation process in its different stages.

Studies dedicated to user's adoption, acceptance, and use of IT have been rampant since the advent of computers and IT. Therefore, it becomes essential to assess the value of IT to organizations and to understand the determinants of such value in terms of acceptance, integration, and technology use. In this regard, Enterprise Resource Planning (ERP) adoption remains challenging for professionals and practitioners alike. Previous research neglected many vital factors, such as user involvement (participation, engagement, and resilience) and environmental factors (change management, competitiveness, and pandemic pressure). Therefore, this study aims to identify the most significant factors that influence the successful adoption of ERP and propose a conceptual model. The Technology Acceptance Model with DeLone and McLean Information Success Models were the base for the study. The findings of this study reveal a conceptual model that facilitates the successful adoption of ERP systems. Through the identification of critical factors, one factor emerged as a permanent component in the adoption process. This conceptual model provides valuable insights for organizations seeking to implement and adopt ERP systems effectively. The study's findings offer valuable insights for firms pursuing long-term economic success through ERP adoption. Understanding the influencing factors enables efficient and effective deployment. Implications are relevant to organizations, ERP vendors, and decision-makers, guiding informed decision-making and prioritizing success factors.

The last decades have seen a shift towards activation policies in welfare states, such as the introduction programme for refugees in Norway, a qualification programme that seeks to prepare refugees for the labour market. In the last decade, the programme has placed further focus on refugees’ duties rather than their rights, as it had previously done. This article examines the strategies that work counsellors in the introduction programme use to ‘activate’ and assist newly arrived refugees as they prepare to enter the Norwegian labour market. We focus on how work counsellors guide and motivate refugees in this process. We draw on 10 semi-structured interviews with work counsellors in various municipalities in southwestern Norway. We suggest that the activating strategies used by the work counsellors may be seen as a form of aspirations management to get the refugees to shift their aspirations toward those the work counsellors see as more achievable within a shorter period, to get them more quickly into the labour market. We suggest that unchecked power dynamics, together with increasing time-pressure on work counsellors, may be at play leading them to exert too much influence, and leading to user involvement practice not being properly implemented.

Abstract Several studies have shown that involving users in design processes is a key factor in understanding user needs and essential for designing computer systems capable of providing valuable user experiences. However, many practitioners do not emphasize user needs sufficiently and neglect user involvement in software design and development. The UCD Sprint is a recently proposed, step-by-step, cost-effective process that focuses on involving users in design activities. This article reports a mixed-method study in which, for the first time, practitioners working in companies used the UCD Sprint; the study’s main objective was to investigate the impact of the UCD Sprint on practitioners’ design practices. The results show that, among the various activities associated with this process, those that involved users were particularly appreciated by practitioners. Thus, the UCD Sprint can enhance the innovativeness of company design practices; it enables practitioners to obtain sufficient information to create systems that fit users’ needs. [ABSTRACT FROM AUTHOR]

In Bangladesh, there have been many incidents of violence linked to social media platforms, particularly Facebook. These incidents have been caused by posts that have either intentionally or unintentionally provoked hatred and instigated violence. In this study, we examine seven such incidents that were triggered by religious differences in Bangladesh. By reviewing previous research and case studies, we aim to identify the factors that contribute to the spread of hate speech and misinformation on social media. We also discuss the challenges involved in preventing violent incidents. To reduce the likelihood of such incidents, we propose three recommendations: prioritize news for fact-checking, promote fact-checking among users, and involve users in the factchecking process. These recommendations can be implemented using existing technology to limit the spread of false information and hate speech on social media platforms. This could ultimately reduce the risk of violent incidents triggered by social media. [ABSTRACT FROM AUTHOR]

This article explores the role of homeless voices in constructing knowledge about homelessness and the development of policy and service delivery responses to homeless people. Specifically, the article highlights the suggestive value position for social work encapsulated in Honneth's concept of recognition as a framework from which to understand and incorporate homeless voices in the construction of knowledge about and policy responses to homelessness. While written with an Australian focus, the argument has implications for social work at an international level. [ABSTRACT FROM AUTHOR]

Although numerous methods for handling the technical aspects of developing domain-specific modeling languages (DSMLs) have been formalized, user needs and usability aspects are often addressed late in the development process and in an ad hoc manner. To this concern, this paper presents the development of the customer journey modeling language (CJML), a DSML for modeling service processes from the end-user's perspective. Because CJML targets a wide and heterogeneous group of users, its usability can be challenging to plan and assess. This paper describes how an industry-relevant DSML was systematically improved by using a variety of user-centered design techniques in close collaboration with the target group, whose feedback was used to refine and evolve the syntax and semantics of CJML. We also suggest how a service-providing organization may benefit from adopting CJML as a unifying language for documentation purposes, compliance analysis, and service innovation. Finally, we distill what we learned into general lessons and methodological guidelines. [ABSTRACT FROM AUTHOR]

Accessible Summary: What is known on the subject?: Large numbers of mental health professionals live with their own mental health challenges.Despite working in mental health care, they can experience stigma in the workplace.Mental health professionals with lived experience of mental illness can find it a challenge to integrate their identities as both mental health professional and mental health service user.There are currently limited options available to them. What the paper adds to existing knowledge?: This is a personal reflection from a mental health nurse and lecturer, who lives with a severe and enduring mental illness.It offers a lived experience account of the identity struggles of a mental health professional living with a mental illness.This article attempts to redefine the identity of professionals with personal lived experience in a more positive manner. They can be valued and celebrated for their unique perspective on mental illness and mental health care. What are the implications for practice?: There remains a stigma attached to people living with mental health conditions. This article challenges some of this stigma.It will empower and encourage other health professionals with lived experience to embrace all aspects of their identity with authenticity and courage. There are growing numbers of mental health professionals with their own lived experience of mental illness. This is both in part due to increased visibility and openness, and students embarking on professional courses motivated by their own personal mental health history. The somewhat limited research in this area highlights the difficulty practitioners have in navigating this distinct identity. There are limited options, including a wounded healer, an impaired professional and professional survivor. All have their limitations. We need to revise the conceptualisation of mental health professionals with personal lived experience of mental illness. Our identity needs to be celebrated and valued, as are the roles of peer support worker and expert by experience. Through personal reflection, I describe my own challenges in negotiating my identity as a mental health nurse, lecturer, and service user. My solution is to embrace authenticity and have the courage to stand in vulnerability and strength, embracing all aspects of myself. I call for others to do the same. [ABSTRACT FROM AUTHOR]

Background: Video consultations has been suggested to lower the threshold for child and adolescent mental healthcare treatment. This study explores how young people receiving child welfare services experience video consultations in child and adolescent mental healthcare. The study is part of a larger Norwegian study of access to health services for this target group. Methods: The study has a mixed methods design including qualitative interviews and a quantitative survey, with young people receiving child welfare services. The qualitative interviews included 10 participants aged 15–19. The survey included 232 participants aged 16–24 of which 36 reported having received video consultations in mental healthcare. The interviews were analysed using thematic analysis. The survey data was presented as frequencies to clarify the distribution of positive and negative perceptions of video consultation. Results: The results show that the participants experienced video consultations as more superficial and less binding, compared to in-person sessions. They raised concerns of the therapeutic relationship, however some found it easier to regulate closeness and distance. In the survey several reported that their relationship with the therapist got worse, and that it was much more difficult to talk on screen. Moreover, a large proportion (42%) claimed that video consultations did not fit their treatment needs overall. However, a minority of the participants found it easier to talk to the therapist on screen. Conclusions: The study reveals important weaknesses and disadvantages of online therapy as experienced by young people receiving child welfare services. It is particularly worrying that their criticism involves the relational aspects of treatment, as children receiving child welfare services often have relational experiences which make them particularly sensitive to challenges in relationships. This study shows that youth involvement in decision making of video consultations in therapy has been rare. Clinicians should be aware of these young people's doubts regarding the quality of video consultations in child and adolescent mental health care. Further studies should examine how user involvement can be incorporated in video consultations in therapy and how this could improve experiences and the quality of video consultations. [ABSTRACT FROM AUTHOR]

User involvement is widely recognized as best practice in the development of information technology (IT) systems. In large-scale IT projects, the involvement of users and other stakeholder groups is typically in the form of representatives, as opposed to the direct (in-person) participation characteristic for smaller projects. The potential new sharing of power that representative participation entails vis-à-vis direct stakeholder involvement, and the implications of such a shift, are an important discussion in the context of participatory design. This paper extends and adds to previous work on this subject. Drawing on stakeholder interviews conducted as part of a case study of an electronic health record implementation project in Norway, this paper seeks to describe and analyze problems that can arise with representative participation in a large-scale project. Our focus is on an observed decline of interaction between health professionals participating actively in the project and their advisory units consisting of colleagues without a formal project role. The paper describes how the project's structural arrangements might explain this decline. The paper also describes how the participating health professionals' involvement of the advisory units at regular intervals early in the project (broad involvement) was replaced by more ad hoc and competence-oriented approaches (narrow involvement). We further use the organizational structure of democracies as the basis for two analogies, (I) participants-as-political-representatives and (II) participants-as-technocrats. The observed decline in interaction between the participating health professionals and their advisory units can be seen as a transition in role from user representative to technocrat. Generalizing from the case, we suggest that (1) a project's structure strongly affects the possibilities of participating users to consult other users (e.g., non-participating colleagues) about issues concerning the design solution, (2) a project's structure conditions the role of participating users and who, or what, they represent, and (3) representative participation requires rethinking a project's structure. [ABSTRACT FROM AUTHOR]

Background: Successful diabetes management requires collaboration between patients and healthcare professionals and should be aligned with an individual's condition and resources. We developed a flexible, individualised, patient‐reported outcome (PRO)‐based telehealth intervention called "DiabetesFlex Care" in which patients completed an annual self‐reported questionnaire from home, one required face‐to‐face appointment, and two optional outpatient consultations. In this study, we investigated patients' experiences using DiabetesFlex Care. Methods: We conducted a qualitative, interpretive descriptive (ID) study based on semi‐structured interviews with a purposeful sample of 36 patients with type 1 diabetes (T1D) who had used DiabetesFlex Care. Recorded audio data were transcribed and analysed inductively using the constant comparative method. Results: DiabetesFlex Care changed participants' perspectives on living with diabetes. Patients became more involved in their own care and found that DiabetesFlex Care helped to make their conversations with healthcare professionals more relevant. Furthermore, participants appreciated the ability to both choose the format of their appointments (face‐to‐face vs. phone call) and cancel unnecessary appointments. Conclusion: DiabetesFlex Care was a flexible and inclusive health service that enabled patients to take more responsibility for their own diabetes management. The questionnaire‐based approach in DiabetesFlex Care can help healthcare professionals systematically account for patients' perspectives and support user involvement and self‐management. By extension, this approach can also help minimise healthcare‐related disruptions in patients' lives. Further studies are needed to determine whether flexible PRO‐based telehealth is an acceptable solution for all patients. [ABSTRACT FROM AUTHOR]

In an increasingly multilingual digital world, information management tools must support the simultaneous use and matching of multiple natural languages. A prerequisite for this is that the underlying database engine seamlessly processes multilingual data across languages. However, most natural language processing-based techniques have focused on developing monolingual matching algorithms, often ignoring context knowledge and external domain-based sources, which lead to incomplete and inaccurate matching results in a multilingual environment. The purpose of this study is to propose an adaptive semantic matching method with context knowledge and user involvement as two new dimensions for matching the semantically related entities ontologies. We present a comprehensive evaluation of our solution by applying it in a multilingual e-commerce platform case study, which performed well on matching accuracy. [ABSTRACT FROM AUTHOR]