The traditional paternalistic approach in health care is increasingly developing towards a patient-centered care (PCC) approach. However, not all patients are able to take advantage of the positive effects of PCC. Inadequate health literacy (HL) is an important limiting factor in the ability of patients to take on an active role and exchange information with their health care provider effectively. A provenly effective approach to improvement of provider-patient interaction and health outcomes is the use of health-related questionnaires. The aim of the research project described within this thesis was to adapt the most frequently-used questionnaire in Dutch physical therapy practice and add information and communication technology to it. A Dutch and Turkish version of the tool called Talking Touch Screen Questionnaire (TTSQ) was developed and evaluated on both usability and validity aspects. The current prototype of the tool does not yet fully solve the problems native and minority patients with low (health) literacy have with completing the adapted questionnaire. Big challenges in future development and testing the TTSQ are the recruitment of vulnerable members of the hard-to-reach native and minority target populations and finding research methods that suit the abilities and needs of these participants. This is expected to be a very challenging, labor- and time-consuming process. On the other hand, having a usable, valid and reliable TTSQ may well save a lot of time and money in both research and clinical practice in the future.
Citizen science can be a powerful approach to foster the successful implementation of technological innovations in health, care or well-being. Involving experience experts as co-researchers or co-designers of technological innovations facilitates mutual learning, community building, and empowerment. By utilizing the expert knowledge of the intended users, innovations have a better chance to get adopted and solve complex health-related problems. As citizen science is still a relatively new practice for health and well-being, little is known about effective methods and guidelines for successful collaboration. This scoping review aims to provide insight in (1) the levels of citizen involvement in current research on technological innovations for health, care or well-being, (2) the used participatory methodologies, and (3) lesson’s learned by the researchers. A scoping review was conducted and reported in accordance with the PRISMA-ScR guidelines. The search was performed in SCOPUS in January 2021 and included peer-reviewed journal and conference papers published between 2016 and 2020. The final selection (N = 83) was limited to empirical studies that had a clear focus on technological innovations for health, care or well-being and involved citizens at the level of collaboration or higher. Our results show a growing interest in citizens science as an inclusive research approach. Citizens are predominantly involved in the design phase of innovations and less in the preparation, data-analyses or reporting phase. Eight records had citizens in the lead in one of the research phases. Researcher use different terms to describe their methodological approach including participatory design, co-design, community based participatory research, co-creation, public and patient involvement, partcipatory action research, user-centred design and citizen science. Our selection of cases shows that succesful citizen science projects develop a structural and longitudinal partnership with their collaborators, use a situated and adaptive research approach, and have researchers that are willing to abandon traditional power dynamics and engage in a mutual learning experience.
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Background: To prevent deterioration after admission to the intensive care unit (ICU), and to improve rehabilitation, the ICU team should use digital technologies to provide comprehensive and practical information alongside personalised support for survivors and their family members. However, a knowledge gap exists on the users’ preferences for such an e-health platform in ICU follow-up services. Objectives: This study aims to explore the opinions and priorities for an e-health platform, including choices in digital elements, according to survivors of critical illness and their family members. Methods: A cross-sectional survey was used among members and other interested individuals of the Dutch volunteer organisation ‘Foundation Family- and Patient-Centred Intensive Care’. An investigator-developed questionnaire was disseminated through the newsletter and social media channels of the Foundation Family- and Patient-Centred Intensive Care. The results of this member consultation were analysed and reported as descriptive statistics on demographic variables and outcome measures in opinions and priorities of the participants. Results: Most of the 227 participants were female (76%), aged 46–55 years (33%), and completed higher education (70%). The participants reported high confidence in advice delivered through an e-health platform (72%). They prioritised the provision of a guide including relevant professionals who may support them during their recovery when using an e-health platform. Conclusions: ICU survivors prioritised the provision of relevant professionals who may support them during their recovery when using an e-health platform; however, selection bias means the population studied is likely to be more digitally connected than the general ICU population. Digital solutions could cater to their information and support needs. For family members, the highest priority reported was receiving help in managing their emotional distress. The development of an e-health platform considering the opinions and priorities of this target group could contribute to a personalised recovery trajectory promoting self-management while including digital elements addressing relevant ICU follow-up services.
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