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  • 1.
    Nygren, Jens M.
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Lindberg, Susanne
    Halmstad University, School of Information Technology, Halmstad Embedded and Intelligent Systems Research (EIS).
    Wärnestål, Pontus
    Halmstad University, School of Information Technology, Halmstad Embedded and Intelligent Systems Research (EIS).
    Svedberg, Petra
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Nursing.
    Involving Children With Cancer in Health Promotive Research: A Case Study Describing Why, What, and How2017In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 6, no 2, article id e19Article in journal (Refereed)
    Abstract [en]

    Background: Participatory research approaches have been introduced to meet end-users’ needs in the development of health promotion interventions among children. However, whereas children are increasingly involved as passive informants in particular parts of research, they are rarely involved as partners, equal to adult researchers, throughout the research process. This is especially prominent in the context of child health where the child is commonly considered to be vulnerable or when the research concerns sensitive situations. In these cases, researchers and gatekeepers to children’s involvement base their resistance to active involvement of children on potential adverse effects on the accuracy or quality of the research or on ethical or moral principles that participation might harm the child. Thus most research aimed at developing health promotion interventions for children in health care is primarily based on the involvement of parents, caregivers, and other stakeholders.

    Objective: The objective of this paper is to discuss reasons for involving children in health promotive research and to explore models for children’s participation in research as a basis for describing how researchers can use design methodology and participatory approaches to support the participation and contribution of children in a vulnerable context.

    Methods: We developed and applied a model for children's participation in research to the development of a digital peer support service for children cancer survivors. This guided the selection of appropriate research and design methodologies (such as interviews, focus groups, design sessions, and usability evaluation) for involving the children cancer survivors (8-12 years) in the design of a digital peer support service.

    Results: We present a model for what children’s participation in research means and describe how we practically implemented this model in a research project on children with cancer. This paper can inform researchers in their planning of strategies for children’s participation and ensure future development of health promotion interventions for children is based on their perspectives.

    Conclusions: Challenges in reaching a suitable degree of participation during a research project involve both creating opportunities for children to have genuine influence on the research process and organizing this involvement so that they feel they understand what they are involved in and why. To achieve this, it is essential to enable children to be involved in research over time to gain confidence in the researchers and to develop children’s abilities to make decisions throughout the research processes.

  • 2.
    Nygren, Jens Martin
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Zukauskaite, Elena
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Westberg, Niklas
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    User Participation in Coproduction of Health Innovation: Proposal for a Synergy Project2018In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 7, no 5, article id e126Article in journal (Refereed)
    Abstract [en]

    Background: This project concerns advancing knowledge, methods, and logic for user participation in coproduction of health innovations. Such advancement is vital for several reasons. From a user perspective, participation in coproduction provides an opportunity to gain real influence over goal definition, design, and implementation of health innovations, ensuring that the solution developed solves real problems in right ways. From a societal perspective, it's a mean to improve the efficiency of health care and the implementation of the Patient Act. As for industry, frameworks and knowledge of coproduction offer tools to operate in a complex sector, with great potential for innovation of services and products.

    Objective: The fundamental objective of this project is to advance knowledge and methods of how user participation in the coproduction of health innovations can be applied in order to benefit users, industry, and public sector.

    Methods: This project is a synergy project, which means that the objective will be accomplished through collaboration and meta-analysis between three subprojects that address different user groups, apply different strategies to promote human health, and relate to different parts of the health sector. Furthermore, subprojects focus on distinctive stages in the spectrum of innovation, with the objective to generate knowledge of the innovation process as a whole. The project is organized around three work packages related to three challenges-coproduction, positioning, and realization. Each subproject is designed such that it has its own field of study with clearly identified objectives but also targets work packages to contribute to the project as a whole. The work on the work packages will use case methodology for data collection and analysis based on the subprojects as data sources. More concretely, logic of multiple case studies will be applied with each subproject representing a separate case which is similar to each other in its attention to user participation in coproduction, but different regarding, for example, context and target groups. At the synergy level, the framework methodology will be used to handle and analyze the vast amount of information generated within the subprojects.

    Results: The project period is from July 1, 2018 to June 30, 2022.

    Conclusions: By addressing the objective of this project, we will create new knowledge on how to manage challenges to health innovation associated with the coproduction process, the positioning of solutions, and realization. © Jens Nygren, Elena Zukauskaite, Niklas Westberg.

  • 3.
    Pejner, Norell Margaretha
    et al.
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    Ourique de Morais, Wagner
    Halmstad University, School of Information Technology, Halmstad Embedded and Intelligent Systems Research (EIS).
    Lundström, Jens
    Halmstad University, School of Information Technology, Halmstad Embedded and Intelligent Systems Research (EIS).
    Laurell, Hélène
    Halmstad University, School of Business, Engineering and Science, Centre for Innovation, Entrepreneurship and Learning Research (CIEL).
    Skärsäter, Ingela
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI).
    A Smart Home System for Information Sharing, Health Assessments, and Medication Self-Management for Older People: Protocol for a Mixed-Methods Study2019In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 8, no 4, article id e12447Article in journal (Refereed)
    Abstract [en]

    Background: Older adults often want to stay in a familiar place, such as their home, as they get older. This so-called aging in place, which may involve support from relatives or care professionals, can promote older people’s independence and well-being. The combination of aging and disease, however, can lead to complex medication regimes, and difficulties for care providers in correctly assessing the older person's health. In addition, the organization of the health care is fragmented, which makes it difficult for health professionals to encourage older people to participate in their care. It is also a challenge to perform adequate health assessment and appropriate communication between health care professionals.

    Objective: The purpose of this paper is to describe the design for an integrated home-based system that can acquire and compile health-related evidence for guidance and information sharing among care providers and care receivers in order to support and promote medication self-management among older people.

    Methods: The authors used a participatory design (PD) approach for this mixed-method project, which was divided into four phases: Phase I, Conceptualization, consisted of the conceptualization of a system to support medication self- management, objective health assessments, and communication between health care professionals. Phase II, Development of a System, consisted of building and bringing together the conceptualized systems from phase I. Phases III (pilot study) and IV (a full-scale study) are described briefly.

    Results: Our participants in phase I were people who were involved in some way in the care of older adults, and included older adults themselves, relatives of older adults, care professionals, and industrial partners. With input from phase I participants, we identified two relevant concepts for promoting medication self-management, both of which related to systems that participants believed could provide guidance for the older adults themselves, relatives of older adults, and care professionals. The system will also encourage information sharing between care providers and care receivers. The first is the concept of the Intelligent Friendly Home (IAFH), defined as an integrated residential system that evolves to sense, reason and act in response to individual needs, preferences and behaviors as these change over time. The second concept is the MedOP system, a system that would be supported by the IAFH, and which consists of three related components: one that assess health behaviors, another that communicates health data, and a third that promotes medication self-management.

    Conclusions: The participants in this project were older adults, relatives of older adults, care professionals, and our industrial partners. With input from the participants, we identified two main concepts that could comprise a system for health assessment, communication and medication self-management: the Intelligent Friendly Home (IAFH), and the MedOP system. These concepts will be tested in this study to determine whether they can facilitate and promote medication self-management in older people. © The authors. All rights reserved. 

  • 4.
    Winterling, Jeanette
    et al.
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden & Center of Haematology, Karolinska University Hospital, Stockholm, Sweden.
    Wiklander, Maria
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Micaux Obol, Claire
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden & Stress Rehabilitation Research, Department of Clinical Sciences Danderyd Hospital, Karolinska Institutet, Stockholm, Sweden.
    Lampic, Claudia
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Eriksson, Lars E
    Medical Management Center, Department of Learning, Informatics, Management and Ethics, Karolinska Institutet, Stockholm, Sweden & Department of Infectious Diseases, Karolinska University Hospital, Stockholm, Sweden & School of Health Sciences, City University London, London, United Kingdom.
    Pelters, Britta
    Halmstad University, School of Health and Welfare, Centre of Research on Welfare, Health and Sport (CVHI), Health and Sport.
    Wettergren, Lena
    Division of Nursing, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Huddinge, Sweden.
    Development of a Self-Help Web-Based Intervention Targeting Young Cancer Patients With Sexual Problems and Fertility Distress in Collaboration With Patient Research Partners2016In: JMIR Research Protocols, ISSN 1929-0748, E-ISSN 1929-0748, Vol. 5, no 2, p. e60-, article id e60Article in journal (Refereed)
    Abstract [en]

    Background: The Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive health, including sexuality, an area of great importance and approximately 50% report sexual problems and fertility-related concerns following cancer treatment. Therefore, we set out to develop a self-help Web-based intervention, Fex-Can, to alleviate such problems. To improve its quality, we decided to involve patients and significant others as research partners. The first 18 months of our collaboration are described in this paper. The intervention will subsequently be tested in a feasibility study followed by a randomized controlled trial.

    Objective: The study aims to describe the development of a Web-based intervention in long-term collaboration with patient research partners (PRPs).

    Methods: Ten former cancer patients and two significant others participated in building the Web-based intervention, using a participatory design. The development process is described according to the design step in the holistic framework presented by van Gemert-Pijnen et al and evaluates the PRPs’ impact on the content, system, and service quality of the planned intervention.

    Results: The collaboration between the research group and the PRPs mainly took place in the form of 1-day meetings to develop the key components of the intervention: educational and behavior change content, multimedia (pictures, video vignettes, and audios), interactive online activities (eg, self-monitoring), and partial feedback support (discussion forum, tailored feedback from experts). The PRPs influenced the intervention’s content quality in several ways. By repeated feedback on prototypes, the information became more comprehensive, relevant, and understandable. The PRPs gave suggestions concerning the number of exercises and pointed out texts and pictures needing revision (eg, experienced as normative or stereotypical) to increase the persuasiveness of the program. The system quality was improved by PRPs’ feedback on design, technical malfunctions, and navigation on the website. Based on feedback about availability of professional support (technical problems and program content), the organization for support was clarified, which increased service quality. The PRPs also influenced the research project on an overall level by suggesting modifications of inclusion criteria for the RCT and by questioning the implementation plan.

    Conclusions: With suggestions and continuous feedback from PRPs, it was possible to develop a Web-based intervention with persuasive design, believed to be relevant and attractive for young persons with cancer who have sexual problems or fertility distress. In the next step, the intervention will be tested in a feasibility study, followed by an RCT to test the intervention’s effectiveness in reducing sexual problems and fertility distress.

1 - 4 of 4
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