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BACKGROUND: The Covid-19 pandemic is characterized by uncertainty and constant change, forcing governments and health authorities to ramp up risk communication efforts. Consequently, visuality and social media platforms like Twitter have come to play a vital role in disseminating prevention messages widely. Yet to date, only little is known about what characterizes visual risk communication during the Covid-19 pandemic. To address this gap in the literature, this study's objective was to determine how visual risk communication was used on Twitter to promote the World Health Organisations (WHO) recommended preventative behaviours and how this communication changed over time. METHODS: We sourced Twitter's 500 most retweeted Covid-19 messages for each month from January-October 2020 using Crowdbreaks. For inclusion, tweets had to have visuals, be in English, come from verified accounts, and contain one of the keywords 'covid19', 'coronavirus', 'corona', or 'covid'. Following a retrospective approach, we then performed a qualitative content analysis of the 616 tweets meeting inclusion criteria. RESULTS: Our results show communication dynamics changed over the course of the pandemic. At the start, most retweeted preventative messages came from the media and health and government institutions, but overall, personal accounts with many followers (51.3%) predominated, and their tweets had the highest spread (10.0%, i.e., retweet count divided by followers). Messages used mostly photographs and images were found to be rich with information. 78.1% of Tweets contained 1-2 preventative messages, whereby 'stay home' and 'wear a mask' frequented most. Although more tweets used health loss framing, health gain messages spread more. CONCLUSION: Our findings can inform the didactics of future crisis communication. The results underscore the value of engaging individuals, particularly influencers, as advocates to spread health risk messages and promote solidarity. Further, our findings on the visual characteristic of the most retweeted tweets highlight factors that health and government organisations should consider when creating visual health messages for Twitter. However, that more tweets used the emotive medium of photographs often combined with health loss framing raises concerns about persuasive tactics. More research is needed to understand the implications of framing and its impact on public perceptions and behaviours.
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COVID-19 , Mídias Sociais , Comunicação , Humanos , Pandemias , Estudos Retrospectivos , SARS-CoV-2RESUMO
BACKGROUND: Because refugees face significant adversities before, during, and after resettlement, resilience is of central importance to this population. However, strengths-based research on post-migration refugee experiences is sparse. METHODS: We conducted semi-structured interviews with 54 adult refugee participants who arrived in Germany between 2013 and 2018 in their preferred language. We analyzed different aspects of resilience in these interviews using thematic analysis. RESULTS: Nine themes were identified. Four themes manifest resilience in different ways and encompass cognitive as well as behavioral strategies for facing adversity, self-ascriptions of resilience as a personal trait or lasting characteristic, and the role of volunteering, work, and activism for refugee causes. Five themes capture factors that facilitate resilience: social support, experiencing migration as an opportunity generally and for women in particular, being a parent, and being young. CONCLUSIONS: This study adds to a growing body of knowledge about resilience among adult refugees. It may support clinicians working with refugees by making them aware of specific manifestations of resilience and factors promoting positive adaptation specific to this client group. It also contributes to a more strengths-based view on refugee mental health and processes of integration.
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Refugiados , Adulto , Feminino , Alemanha , Humanos , Saúde Mental , Pesquisa Qualitativa , VoluntáriosRESUMO
STUDY DESIGN: Qualitative exploratory study. OBJECTIVES: To explore the lived experience of SCI caregivers, with a focus on the challenges of their role. SETTING: Caregivers of people with SCI living in the community in Switzerland. METHODS: Data were collected through semi-structured interviews. Thematic analysis was performed. RESULTS: The sample included 22 participants (16 women, 15 life partners) with a mean age of 61 years who had been caregivers for an average of 18 years. Caregiving in SCI seemed to be characterized by two phases. The first phase was relatively short and was central to becoming a caregiver; it was marked by challenges related to adjusting to the role of caregiver (e.g., dealing with shock, feeling unprepared). The second phase is lifelong and is characterized by a number of recurrent challenges related to balancing caregiving and personal life (e.g., having to prioritize caregiving over personal wishes, negotiating tasks and workload). Challenges related to lacking appropriate housing, facing financial uncertainty and dealing with bureaucracy were noted during both phases. Caregivers had to deal with these challenges to stay in step with life changes and newly emerging needs. CONCLUSIONS: Informal caregivers have a major role in supporting people with SCI. But their needs are not static. Any strategy to empower them has to adapt to an evolving role characterized by multiple tasks and challenges. A functional relationship between caregivers and care recipients is based on the recognition of their individualities and the different phases of adaptation, which is also an enriching process.
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Traumatismos da Medula Espinal , Adaptação Fisiológica , Cuidadores , Emoções , Feminino , Humanos , Pessoa de Meia-Idade , Pesquisa Qualitativa , Traumatismos da Medula Espinal/terapiaRESUMO
BACKGROUND: Data have become an essential factor in driving health research and are key to the development of personalized and precision medicine. Primary and secondary use of personal data holds significant potential for research; however, it also introduces a new set of challenges around consent processes, privacy, and data sharing. Research institutions have issued ethical guidelines to address challenges and ensure responsible data processing and data sharing. However, ethical guidelines directed at researchers and medical professionals are often complex; require readers who are familiar with specific terminology; and can be hard to understand for people without sufficient background knowledge in legislation, research, and data processing practices. OBJECTIVE: This study aimed to visually represent an ethics framework to make its content more accessible to its stakeholders. More generally, we wanted to explore the potential of visualizing policy documents to combat and prevent research misconduct by improving the capacity of actors in health research to handle data responsibly. METHODS: We used a mixed methods approach based on knowledge visualization with 3 sequential steps: qualitative content analysis (open and axial coding, among others); visualizing the knowledge structure, which resulted from the previous step; and adding interactive functionality to access information using rapid prototyping. RESULTS: Through our iterative methodology, we developed a tool that allows users to explore an ethics framework for data sharing through an interactive visualization. Our results represent an approach that can make policy documents easier to understand and, therefore, more applicable in practice. CONCLUSIONS: Meaningful communication and understanding each other remain a challenge in various areas of health care and medicine. We contribute to advancing communication practices through the introduction of knowledge visualization to bioethics to offer a novel way to tackle this relevant issue.
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Política de Saúde/tendências , Medicina de Precisão/ética , Bioética , Humanos , ConhecimentoRESUMO
BACKGROUND: Explainability is one of the most heavily debated topics when it comes to the application of artificial intelligence (AI) in healthcare. Even though AI-driven systems have been shown to outperform humans in certain analytical tasks, the lack of explainability continues to spark criticism. Yet, explainability is not a purely technological issue, instead it invokes a host of medical, legal, ethical, and societal questions that require thorough exploration. This paper provides a comprehensive assessment of the role of explainability in medical AI and makes an ethical evaluation of what explainability means for the adoption of AI-driven tools into clinical practice. METHODS: Taking AI-based clinical decision support systems as a case in point, we adopted a multidisciplinary approach to analyze the relevance of explainability for medical AI from the technological, legal, medical, and patient perspectives. Drawing on the findings of this conceptual analysis, we then conducted an ethical assessment using the "Principles of Biomedical Ethics" by Beauchamp and Childress (autonomy, beneficence, nonmaleficence, and justice) as an analytical framework to determine the need for explainability in medical AI. RESULTS: Each of the domains highlights a different set of core considerations and values that are relevant for understanding the role of explainability in clinical practice. From the technological point of view, explainability has to be considered both in terms how it can be achieved and what is beneficial from a development perspective. When looking at the legal perspective we identified informed consent, certification and approval as medical devices, and liability as core touchpoints for explainability. Both the medical and patient perspectives emphasize the importance of considering the interplay between human actors and medical AI. We conclude that omitting explainability in clinical decision support systems poses a threat to core ethical values in medicine and may have detrimental consequences for individual and public health. CONCLUSIONS: To ensure that medical AI lives up to its promises, there is a need to sensitize developers, healthcare professionals, and legislators to the challenges and limitations of opaque algorithms in medical AI and to foster multidisciplinary collaboration moving forward.
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Inteligência Artificial , Sistemas de Apoio a Decisões Clínicas , Atenção à Saúde , Instalações de Saúde , Humanos , Consentimento Livre e EsclarecidoRESUMO
BACKGROUND: The use of online communities to promote end user involvement and co-creation in the product and service innovation process is well documented in the marketing and management literature. Whereas online communities are widely used for health care service provision and peer-to-peer support, only little is known about how they could be integrated into the health care innovation process. OBJECTIVE: The overall objective of this qualitative study was to explore community managers' views on and experiences with knowledge co-creation in online communities for people with disabilities. METHODS: A descriptive qualitative research design was used. Data were collected through semi-structured interviews with nine community managers. To complement the interview data, additional information was retrieved from the communities in the form of structural information (number of registered users, number and names of topic areas covered by the forum) and administrative information (terms and conditions and privacy statements, forum rules). Data were analyzed using thematic analysis. RESULTS: Our results highlight two main aspects: peer-to-peer knowledge co-creation and types of collaboration with external actors. Although community managers strongly encouraged peer-to-peer knowledge co-creation, our findings indicated that these activities were not common practice in the communities under investigation. In fact, much of what related to co-creation, prototyping, and product development was still perceived to be directed by professionals and experts. Community managers described the role of their respective communities as informing this process rather than a driving force. The role of community members as advisors to researchers, health care professionals, and businesses was discussed in the context of types of collaboration with external actors. According to the community managers, most of the external inquiries related to research projects of students or health care professionals in training, who often joined a community for the sole purpose of recruiting participants for their research. Despite this unilateral form of knowledge co-creation, community managers acknowledged the mere interest of these user groups as beneficial, as long as their interest was not purely financially motivated. Being able to contribute to advancing research, improving products, and informing the planning and design of health care services were described as some of the key motivations to engage with external stakeholders. CONCLUSIONS: This paper draws attention to the currently under-investigated role of online communities as platforms for collaboration and co-creation between patients, health care professionals, researchers, and businesses. It describes community managers' views on and experiences with knowledge co-creation and provides recommendations on how these activities can be leveraged to foster knowledge co-creation in health care. Engaging in knowledge co-creation with online health communities may ultimately help to inform the planning and design of products, services, and research activities that better meet the actual needs of those living with a disability.
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Redes Comunitárias/estatística & dados numéricos , Pessoas com Deficiência/reabilitação , Educação a Distância/métodos , Assistência Centrada no Paciente/métodos , Telemedicina/métodos , Feminino , Humanos , Masculino , Pesquisa QualitativaRESUMO
OBJECTIVE: The purpose of this study was to evaluate pressurised wideband acoustic immittance (WAI) tests in children with Down syndrome (DS) and in typically developing children (TD) for prediction of conductive hearing loss (CHL) and patency of pressure equalising tubes (PETs). DESIGN: Audiologic diagnosis was determined by audiometry in combination with distortion-product otoacoustic emissions, 0.226 kHz tympanometry and otoscopy. WAI results were compared for ears within diagnostic categories (Normal, CHL and PET) and between groups (TD and DS). STUDY SAMPLE: Children with DS (n = 40; mean age 6.4 years), and TD children (n = 48; mean age 5.1 years) were included. RESULTS: Wideband absorbance was significantly lower at 1-4 kHz in ears with CHL compared to NH for both TD and DS groups. In ears with patent PETs, wideband absorbance and group delay (GD) were larger than in ears without PETs between 0.25 and 1.5 kHz. Wideband absorbance tests were performed similarly for prediction of CHL and patent PETs in TD and DS groups. CONCLUSIONS: Wideband absorbance and GD revealed specific patterns in both TD children and those with DS that can assist in detection of the presence of significant CHL, assess the patency of PETs, and provide frequency-specific information in the audiometric range.
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Síndrome de Down/complicações , Perda Auditiva Condutiva/diagnóstico , Testes Auditivos/métodos , Adolescente , Estudos de Casos e Controles , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Ventilação da Orelha MédiaRESUMO
Artificial intelligence (AI) has the potential to revolutionize healthcare, for example via decision support systems, computer vision approaches, or AI-based prevention tools. Initial results from AI applications in healthcare show promise but are rarely translated into clinical practice successfully and ethically. This occurs despite an abundance of "Trustworthy AI" guidelines. How can we explain the translational gaps of AI in healthcare? This paper offers a fresh perspective on this problem, showing that failing translation of healthcare AI markedly arises from a lack of an operational definition of "trust" and "trustworthiness". This leads to (a) unintentional misuse concerning what trust (worthiness) is and (b) the risk of intentional abuse by industry stakeholders engaging in ethics washing. By pointing out these issues, we aim to highlight the obstacles that hinder translation of Trustworthy medical AI to practice and prevent it from fulfilling its unmet promises.
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Spurred by recent advances in machine learning and electronic hardware, digital health promises to profoundly transform medicine. At the same time, however, it raises conspicuous ethical and regulatory issues. This has led to a growing number of calls for responsible digital health. Based on stakeholder engagement methods, this paper sets out to identify core impediments hindering responsible digital health in Switzerland. We developed a participatory research methodology to access stakeholders' fragmented knowledge of digital health, engaging 46 digital health stakeholders over a period of five months (December 2020-April 2021). We identified ineffective stakeholder collaboration, lack of ethical awareness among digital health innovators, and lack of relevant regulation as core impediments to responsible digital health. The stakeholders' accounts indicate that ethical concerns may considerably slow the pace of digital health innovation - implying that responsible innovation is a core catalyst for the progress of digital health overall.
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INTRODUCTION: Artificial intelligence (AI) has the potential to transform clinical decision-making as we know it. Powered by sophisticated machine learning algorithms, clinical decision support systems (CDSS) can generate unprecedented amounts of predictive information about individuals' health. Yet, despite the potential of these systems to promote proactive decision-making and improve health outcomes, their utility and impact remain poorly understood due to their still rare application in clinical practice. Taking the example of AI-powered CDSS in stroke medicine as a case in point, this paper provides a nuanced account of stroke survivors', family members', and healthcare professionals' expectations and attitudes towards medical AI. METHODS: We followed a qualitative research design informed by the sociology of expectations, which recognizes the generative role of individuals' expectations in shaping scientific and technological change. Semi-structured interviews were conducted with stroke survivors, family members, and healthcare professionals specialized in stroke based in Germany and Switzerland. Data was analyzed using a combination of inductive and deductive thematic analysis. RESULTS: Based on the participants' deliberations, we identified four presumed roles that medical AI could play in stroke medicine, including an administrative, assistive, advisory, and autonomous role AI. While most participants held positive attitudes towards medical AI and its potential to increase accuracy, speed, and efficiency in medical decision making, they also cautioned that it is not a stand-alone solution and may even lead to new problems. Participants particularly emphasized the importance of relational aspects and raised questions regarding the impact of AI on roles and responsibilities and patients' rights to information and decision-making. These findings shed light on the potential impact of medical AI on professional identities, role perceptions, and the doctor-patient relationship. CONCLUSION: Our findings highlight the need for a more differentiated approach to identifying and tackling pertinent ethical and legal issues in the context of medical AI. We advocate for stakeholder and public involvement in the development of AI and AI governance to ensure that medical AI offers solutions to the most pressing challenges patients and clinicians face in clinical care.
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Inteligência Artificial , Relações Médico-Paciente , Humanos , Motivação , Algoritmos , Pesquisa QualitativaRESUMO
Machine learning has become a key driver of the digital health revolution. That comes with a fair share of high hopes and hype. We conducted a scoping review on machine learning in medical imaging, providing a comprehensive outlook of the field's potential, limitations, and future directions. Most reported strengths and promises included: improved (a) analytic power, (b) efficiency (c) decision making, and (d) equity. Most reported challenges included: (a) structural barriers and imaging heterogeneity, (b) scarcity of well-annotated, representative and interconnected imaging datasets (c) validity and performance limitations, including bias and equity issues, and (d) the still missing clinical integration. The boundaries between strengths and challenges, with cross-cutting ethical and regulatory implications, remain blurred. The literature emphasizes explainability and trustworthiness, with a largely missing discussion about the specific technical and regulatory challenges surrounding these concepts. Future trends are expected to shift towards multi-source models, combining imaging with an array of other data, in a more open access, and explainable manner.
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PURPOSE: To identify the coping strategies used by family caregivers of persons with spinal cord injury (SCI) in Switzerland in order to develop tailored support programs. MATERIALS AND METHODS: Purposive sample of >18 years participants, speaking an official Swiss language fluently, being family caregivers of persons with SCI for at least 4 years, and perceiving either a high or low burden in relation to caregiving. Data were collected through face-to-face semi-structured interviews (N = 22). Thematic analysis was performed. RESULTS: Four main coping strategies were identified: reappraisal, active acceptance, setting limits to the caregiver role, and seeking support. These strategies can be used one at a time or combined, and at different times of a caregiver pathway. Our analysis highlighted that caregivers need skills to implement these strategies (e.g., self-evaluation skills). CONCLUSIONS: Caregivers of persons with SCI develop cognitive coping strategies to make sense of the situation and establish a "new normal" and problem-focused coping strategies to deal with their new tasks and role. These strategies do not seem to be typical only of SCI caregivers. Hence, interventions that worked for caregivers in other fields could be adapted. Rehabilitation centers should systematically integrate programs targeted to caregivers into their offerings.IMPLICATIONS FOR REHABILITATIONHealthcare systems need to develop educational and support measures for both persons with a health condition and their caregivers.Caregivers should become long-term partners in rehabilitation and a regular and structured needs assessment should be offered.Interventions that worked for caregivers in other fields can be adapted to support also caregivers in SCI.Educational and support programs dedicated to caregivers should teach not only how to perform caregiving tasks but also how to balance between responding to the care recipient's needs and their own needs.
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Cuidadores , Traumatismos da Medula Espinal , Adaptação Psicológica , Cuidadores/psicologia , Família/psicologia , Humanos , Pesquisa Qualitativa , Centros de Reabilitação , Traumatismos da Medula Espinal/reabilitaçãoRESUMO
Explainability for artificial intelligence (AI) in medicine is a hotly debated topic. Our paper presents a review of the key arguments in favor and against explainability for AI-powered Clinical Decision Support System (CDSS) applied to a concrete use case, namely an AI-powered CDSS currently used in the emergency call setting to identify patients with life-threatening cardiac arrest. More specifically, we performed a normative analysis using socio-technical scenarios to provide a nuanced account of the role of explainability for CDSSs for the concrete use case, allowing for abstractions to a more general level. Our analysis focused on three layers: technical considerations, human factors, and the designated system role in decision-making. Our findings suggest that whether explainability can provide added value to CDSS depends on several key questions: technical feasibility, the level of validation in case of explainable algorithms, the characteristics of the context in which the system is implemented, the designated role in the decision-making process, and the key user group(s). Thus, each CDSS will require an individualized assessment of explainability needs and we provide an example of how such an assessment could look like in practice.
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This article's main contributions are twofold: 1) to demonstrate how to apply the general European Union's High-Level Expert Group's (EU HLEG) guidelines for trustworthy AI in practice for the domain of healthcare and 2) to investigate the research question of what does "trustworthy AI" mean at the time of the COVID-19 pandemic. To this end, we present the results of a post-hoc self-assessment to evaluate the trustworthiness of an AI system for predicting a multiregional score conveying the degree of lung compromise in COVID-19 patients, developed and verified by an interdisciplinary team with members from academia, public hospitals, and industry in time of pandemic. The AI system aims to help radiologists to estimate and communicate the severity of damage in a patient's lung from Chest X-rays. It has been experimentally deployed in the radiology department of the ASST Spedali Civili clinic in Brescia, Italy, since December 2020 during pandemic time. The methodology we have applied for our post-hoc assessment, called Z-Inspection®, uses sociotechnical scenarios to identify ethical, technical, and domain-specific issues in the use of the AI system in the context of the pandemic.
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Governments around the globe have started to develop and deploy digital contact tracing apps to gain control over the spread of the novel coronavirus (Covid-19). The appropriateness and usefulness of these technologies as a containment measure have since sparked political and academic discussions globally. The present paper contributes to this debate through an exploration of how the national daily newspapers in Germany, Austria, and Switzerland reported on the development and adoption of digital contact-tracing apps during early and after stages of the lockdown. These countries were among the first in Europe to develop apps and were critical voices in the debate of decentralized vs. centralized data processing. We conducted thematic analysis on news coverage published between January and May 2020 in high-circulation national daily newspapers from Germany, Austria, and Switzerland. A total of 148 articles from nine newspaper companies were included in the final analysis. From our analysis emerged six core themes of the development and adoption of digital contact tracing apps: 1) data governance; 2) role of IT giants; 3) scientific rigor; 4) voluntariness; 5) functional efficacy; 6) role of the app. These results shed light on the different facets of discussion regarding digital contact tracing as portrayed in German-speaking media. This study complements emerging survey data on public perceptions of digital contact tracing apps by providing a better understanding of the ideas circulating in the media ecosystem.
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COVID-19/patologia , Busca de Comunicante , Áustria , COVID-19/epidemiologia , COVID-19/virologia , Alemanha , Humanos , Jornais como Assunto , Percepção , SARS-CoV-2/isolamento & purificação , Inquéritos e Questionários , SuíçaRESUMO
Introduction: Forcibly displaced people are at particular risk of mental health problems and also face specific integration challenges upon resettlement. Existing literature suggests that there may be a bidirectional relationship between mental health and integration. The present study seeks to understand the relationship between integration processes and mental health problems or significant negative emotional experiences among adult refugees in Germany. Method: Applying a qualitative approach, we conducted 54 semi-structured interviews with refugees and asylum seekers who arrived in Germany between 2013 and 2018 currently residing in Berlin, Leipzig, or the Duisburg area in North Rhine-Westphalia. Data was collected between December 2018 and September 2019. We analyzed transcripts inductively using thematic analysis. Results: Five themes covering the various links between integration and mental health problems or significant negative emotional experiences were identified. First, we found that the mental health consequences of past adverse experiences, as well as ongoing worries about those left behind in the homeland, can seriously impede refugees' ability to pursue activities key to integration. Second, the process of applying for and securing asylum can result in uncertainty and fear, which, in turn, burden the individual and may impact motivation for integration. Third, many of our participants described mental health ramifications related to feeling stuck and thwarted in the pursuit of building a life, especially in securing employment. Fourth, some participants described feeling so overwhelmed by fundamental tasks throughout the integration process, namely, language learning and bureaucratic processes, that these take a psychological toll. Fifth, we identified several forms of social disconnection between refugees and members of the host community due to xenophobia, social and cultural differences, physical and emotional isolation in refugee camps, as well as with co-nationals and fellow refugees. Negative emotions, mistrust, and socio-cultural differences that emerge throughout the integration processes seem to erode social cohesion among refugee communities, potentially further threatening mental health. Conclusion: Mental health problems and integration processes appear to be closely related across different areas of integration. Innovative solutions to challenges identified by members of the refugee community in Germany stand to benefit mental health and integration outcomes simultaneously.
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Saúde Mental , Refugiados , Adulto , Alemanha , Humanos , Campos de Refugiados , Refugiados/psicologiaRESUMO
BACKGROUND: Mobile health applications can offer tailored self-management support to individuals living with chronic health conditions. However, there are several challenges to the adoption of these technologies in practice. Co-design is a promising approach to overcoming some of these challenges by enabling the development of solutions that meet the actual needs and preferences of the relevant stakeholder groups. OBJECTIVE: Taking spinal cord injury as a case in point, the overall objectives of this study were to identify the perceived benefits of a co-designed self-management app that could promote its uptake and to explore the factors that may impede adoption. METHODS: We adopted a qualitative research approach guided by the Technology Acceptance Model. Data were collected through semistructured interviews with individuals with spinal cord injury (n=15) and two focus groups with health care professionals specialized in spinal cord injury (n=7, n=5). Prior to the interviews and focus groups, study participants were given time to explore the app prototype. All interviews were transcribed verbatim and analyzed using inductive thematic analysis. RESULTS: Findings of our analysis indicate that study participants perceived the app prototype as potentially useful for supporting individuals with spinal cord injury in preventing pressure injuries. In particular, we identified three concrete use cases highlighting the benefits of the app for different audiences: (1) a companion for newly injured individuals, (2) an emergency kit and motivational support, and 3) a guide for informal caregivers and family members. We also uncovered several challenges that might impede the adoption of the self-management app in practice, including (1) challenges in motivating individuals to use the app, (2) concerns about the misuse and abuse of the app, and (3) organizational and maintenance challenges. CONCLUSIONS: This study adds to a growing body of research that investigates individuals' adoption and nonadoption behavior regarding mobile health solutions. Building on earlier work, we make recommendations on how to address the barriers to the adoption of mobile health solutions identified by this study. In particular, there is a need to foster trust in mobile health among prospective users, including both patients and health care professionals. Moreover, increasing personal relevance of mobile health solutions through personalization may be a promising approach to promote uptake. Last but not least, organizational support also plays an instrumental role in mobile health adoption. We conclude that even though co-design is promoted as a promising approach to develop self-management tools, co-design does not guarantee adoption. More research is needed to identify the most promising strategies to promote the adoption of evidence-based mobile health solutions in practice.
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Aplicativos Móveis , Úlcera por Pressão , Autogestão , Traumatismos da Medula Espinal , Feminino , Humanos , Masculino , Estudos Prospectivos , Pesquisa Qualitativa , Traumatismos da Medula Espinal/terapia , Úlcera por Pressão/prevenção & controleRESUMO
BACKGROUND: Spinal cord injury is a complex chronic health condition that requires individuals to actively self-manage. Therefore, an evidence-based, self-management app would be of value to support individuals with spinal cord injury in the prevention of pressure injuries. OBJECTIVE: The main objectives of this study were to (1) establish a co-design approach for developing a high-fidelity prototype app for the self-management of individuals with spinal cord injury, (2) design the prototype that resulted from this process, and (3) conduct the first usability assessment of the prototype app. METHODS: We adopted a co-design approach to develop an evidence-based app prototype. Starting from a preliminary content model (based on clinical guidelines for the prevention of pressure injuries) and three research-based user personas, we conducted an ideation workshop involving individuals with spinal cord injury and health care professionals. The ideation workshop formed the basis for two consecutive design sprints. The result of this co-design phase was an interactive app prototype. The prototype was evaluated in two rounds of usability testing (N=4 and N=15, respectively) using a combination of qualitative and quantitative methods. RESULTS: The co-design process resulted in a high-fidelity prototype with two key components: a self-management component and a communication component. The final prototype included a combination of features to support individuals with spinal cord injury in the prevention of pressure injuries, namely a smart camera, pressure injury diary, expert consultation, reminders, and knowledge repository. Findings of the usability testing showed that most participants navigated the app fluently with little back and forth navigation and were able to successfully complete a set of assigned tasks. These positive results are supported by the average system usability score achieved (78.5/100; range 47.5-95.0) and our qualitative analysis of the semistructured interviews. Despite an overall positive evaluation of the app prototype, we identified areas for improvement (eg, inclusion of a search function). CONCLUSIONS: Individuals with spinal cord injury often need to navigate competing interests and priorities, paired with uncertainty about the accuracy and relevance of clinical recommendations. Understanding what matters to individuals with spinal cord injury can help guide the design of behavioral interventions that are useful and acceptable to these individuals in their daily lives. This study shows that involving individuals with spinal cord injury and health care professionals in co-designing a self-management app can foster knowledge cocreation at the intersection of lived experience, medical expertise, and technical solutions.
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Aplicativos Móveis , Úlcera por Pressão , Autogestão , Traumatismos da Medula Espinal , Feminino , Humanos , Masculino , Doença Crônica , Traumatismos da Medula Espinal/complicações , Traumatismos da Medula Espinal/terapia , Interface Usuário-Computador , Úlcera por Pressão/prevenção & controleRESUMO
BACKGROUND: Technological solutions, particularly mobile health (mHealth), have been shown to be potentially viable approaches for sustaining individuals' self-management of chronic health conditions. Theory-based interventions are more successful, as evidence-based information is an essential prerequisite for appropriate self-management. However, several reviews have shown that many existing mobile apps fail to be either theoretically grounded or based on evidence. Although some authors have attempted to address these two issues by focusing on the design and development processes of apps, concrete efforts to systematically select evidence-based content are scant. OBJECTIVE: The objective of this study was to present a procedure for the participatory identification of evidence-based content to ground the development of a self-management app. METHODS: To illustrate the procedure, we focused on the prevention and management of pressure injuries (PIs) in individuals with spinal cord injury (SCI). The procedure involves the following three steps: (1) identification of existing evidence through review and synthesis of existing recommendations on the prevention and self-management of PIs in SCI; (2) a consensus meeting with experts from the field of SCI and individuals with SCI to select the recommendations that are relevant and applicable to community-dwelling individuals in their daily lives; and (3) consolidation of the results of the study. RESULTS: In this case study, at the end of the three-step procedure, the content for an mHealth intervention was selected in the form of 98 recommendations. CONCLUSIONS: This study describes a procedure for the participatory identification and selection of disease-specific evidence and professional best practices to inform self-management interventions. This procedure might be especially useful in cases of complex chronic health conditions, as every recommendation in these cases needs to be evaluated and considered in light of all other self-management requirements. Hence, the agreement of experts and affected individuals is essential to ensure the selection of evidence-based content that is considered to be relevant and applicable.
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Aplicativos Móveis , Úlcera por Pressão , Autogestão , Humanos , Doença Crônica , Traumatismos da Medula Espinal/terapia , Telemedicina , Úlcera por Pressão/prevenção & controleRESUMO
BACKGROUND: The communication of prognosis represents an ethical and clinical challenge in medical practice due to the inherent uncertain character of prognostic projections. The literature has stressed that the mode of communicating prognoses has an impact on patients' hope, which is considered to play a major role in adapting to illness and disability. In light of this, this study aims to explore health professionals' (HPs) perceptions of the role of hope in rehabilitation and to examine if and how they use strategies to maintain hope when discussing prognostic information with patients. METHODS: Eleven qualitative semi-structured interviews with a purposive sample of HPs were conducted at two rehabilitation clinics in the Canton of Ticino, Switzerland. The interviews were analyzed using thematic analysis. RESULTS: The HPs perceive hope in rehabilitation as a double-edged sword. Three main strategies were identified to maintain hope while avoiding false hope: 1) giving space for self-evaluation; 2) tailoring the communication of prognostic information; and 3) supporting the patient in dealing with the prognosis. These strategies are particularly suitable when HPs consider that patients might not be ready to accept the prognosis, due to their expectations for recovery. CONCLUSIONS: The strategies identified here support a person-centered approach to the communication of prognosis and are in line with existing protocols for the communication of unfavorable medical information. The findings emphasize the need for strengthening communication and inter-professional collaboration skills of rehabilitation HPs.