Call 2022 - Engaging Science and Society
Improving early detection and support of preschool children with developmental delay: Combining the benefits of two different cantonal systems of care.
Background
Developmental delay (DD) with a prevalence of about 15 percent of all children is one of the most frequent disorders in early childhood [1] [2].Children with DD may suffer from a variety of impairments that are likely to develop into multiple chronic and life-long conditions such as intellectual disability, speech problems, social-communicative deficits, sensory impairments and behavioral and emotional disorders. To avoid or minimize late effects during school or even later in professional life, early intervention (EI) plays an important role.
Long-term studies have shown that children with DD benefit from EI programs [3] [4] [5] [6] [7, 8] [9] [10] but they are costly and need to be very well coordinated and largely available to also reach the more vulnerable families. Even in high income countries (such as Switzerland), many children who begin life with disadvantages do not receive the care necessary for their optimal development [11].
Although numerous studies around the world have analyzed the structure, the usage and the effectiveness of the care system for children with DD, there is a large paucity of information about supply, demand and effectiveness of the services for these children in Switzerland. From 2017 to 2021, the SNF funded a study at the University Children`s Hospital in Zurich on children with DD between 0-5 years in the context of the National Research Program (NRP) 74 “Smarter Health Care” (http://www.nfp74.ch/en/projects/healthcare-across-sectors/project-jenni). The study showed, that the rates of children referred for early interventions for global developmental delay, or language acquisition delay were significantly below expectations, that the utilization of the recommended EI measures was suboptimal, and that numerous families refuse to enroll for EI even if it is recommended [4] [5]. On the other hand, the study revealed a very high rating and appreciation of the EI measures by the families which received the support [6] [12] [13]. In Geneva too, clinical experience shows, that many children with DD justifying EI support are also detected or referred later than clinically recommendable. Moreover, when help is requested, it is not always available as stated in these recent newspaper articles on the lack of therapist for EI in Geneva and Zürich https://www.heidi.news/apprendre-travailler/a-geneve-1700-enfants-coinces-dans-la-jungle-de-la-logopedie, https://www.tagesanzeiger.ch/kinder-warten-bis-zu-einem-jahr-auf-einen-therapieplatz-565237936694. Thus, it is safe to state, that in both cantons, many children in need of EI do not benefit from early detection and support.
In Zürich and Geneva, formal and structural prerequisites, strategies, and professional background of involved professionals to identify and support children with DD early on are very different. In both cantons early detection and follow-up of children at risk at birth for developmental disorders is ensured by our respective Institutions, namely the Service du Développement et de la Croissance of the HUG and the Child Development Center at the Children`s University Hospital in Zurich. With respect to initiating EI, different structures and various professionals and organizations are in charge (a list can be provided upon request). In the Canton Zurich, children with suspected DD are referred for evaluation to a multidisciplinary team (collaborating in the Unit of Special Needs Education, USNE) which decides about the necessary diagnostic procedures and interventions. After children are assigned to one therapy, the responsibility goes over to the family and the therapist without any further coordination by the USNE. Also, the USNE are only responsible for evaluations until kindergarten entry.
In Geneva, children with suspected DD, if not followed by the university hospital because of known risk factors at birth, are either directed to one of the evaluation Centers (at the university hospital or the Fondation Pôle Autisme) for evaluation by a multidisciplinary team or directly addressed to a therapist. The responsibility goes to the parents to contact the therapists and coordinate therapies when more than one is needed. Special need education, speech therapy and psychomotricity have to be approved (on the basis of a written report) by the state service in charge of special education: https://www.ge.ch/organisation/service-pedagogie-specialisee; occupational therapy and physiotherapy do not depend upon this organism. A database exists for the children identified at birth, and a separated database exist for children at school age needing special education.
Both in Geneva and Zurich, efforts are being made to anticipate and respond to the EI needs of children at risk or with DD, but to date, no evaluation of the strengths and weaknesses of the two different systems has been performed.
As stated by Maureen Black “Coordination, monitoring, and evaluation are needed across sectors to ensure that high quality early childhood development services are available throughout early childhood and primary school, up to the age of 8 years” [14]
The general aim of our project is to improve the detection and EI of children at risk or with a DD in Geneva, Zürich and nationwide.
More specifically, the first objective of our project is to compare the different systems of care and resources available in the canton of Geneva and Zurich, which aim at identifying young children at risk or with DD, to assess their needs and - if needed - initiate EI.
The second objective is to propose improvements in data collection and communication between services on children in needs of EI, either based on what is in place in one of the cantons and has proven to be successful, or based on a lack in both cantons.
The third objective is to develop a best-practice proposal that can be used as a model, which could be applied in other cantons or at the Swiss level to optimally identify children at risk of DD and to anticipate and meet their needs.
“As a society, we cannot wait for young people to reach adulthood or school age to invest in their development; intervention would be too late. Investing in early childhood development means increasing human capital and economic growth.”
James J. Heckman, Nobel Laureate in Economic Sciences.
- Vitrikas, K., D. Savard, and M. Bucaj, Developmental Delay: When and How to Screen. Am Fam Physician, 2017. 96(1): p. 36-43.
- Stich, H.L., et al., Individual development of preschool children-prevalences and determinants of delays in Germany: a cross-sectional study in Southern Bavaria. BMC Pediatr, 2012. 12: p. 188.
- Doyle, O., et al., Investing in early human development: timing and economic efficiency. Econ Hum Biol, 2009. 7(1): p. 1-6.
- von Rhein, M. and O. Jenni, Entwicklungsstörungen im frühen Kindesalter – interdisziplinär beurteilt. . Publikation Hellbrügge-Stiftung, 2020.
- Moser, M., O. Jenni, and M. von Rhein, Versorgung von Vorschulkindern mit Entwicklungsstörungen im Kanton Zürich. . Prim Hosp Care Allg Inn Med. , 2021. 21: p. 218-220.
- Schaefer, C.A., et al., Frühe Fördermassnahmen für Kinder mit Autismus-Spektrum-Störung. Situation im Kanton Zürich. Schweizerische Zeitschrift für Heilpädagogik, Jg., 2018. 24(9): p. 14-19.
- Morgan, C., et al., Effectiveness of motor interventions in infants with cerebral palsy: a systematic review. Dev Med Child Neurol, 2016. 58(9): p. 900-9.
- Sanders, M.T., et al., Promoting resilience: A preschool intervention enhances the adolescent adjustment of children exposed to early adversity. Sch Psychol, 2020. 35(5): p. 285-298.
- Spittle, A.J., et al., Early developmental intervention programs post hospital discharge to prevent motor and cognitive impairments in preterm infants. Cochrane Database Syst Rev, 2007(2): p. CD005495.
- Wickstrom, J., et al., Systematic Review: Recommendations for Rehabilitation in ASD and ID From Clinical Practice Guidelines. Arch Rehabil Res Clin Transl, 2021. 3(3): p. 100140.
- Richter, L.M., et al., Investing in the foundation of sustainable development: pathways to scale up for early childhood development. Lancet, 2017. 389(10064): p. 103-118.
- Iffländer, R. and M. von Rhein, Was bleibt nach der HFE von der HFE? . FORUM Mitgliedermagazin des BVF, 2020. 20(1): p. 8-13.
- Iffländer, R. and M. von Rhein, Was bleibt nach der HFE von der HFE? Teil 2: Qualitative Erhebung. . FORUM Mitgliedermagazin des BVF 2021(2).
- Black, M.M., et al., Early childhood development coming of age: science through the life course. Lancet, 2017. 389(10064): p. 77-90.
Leitender Artzt
University Children's Hospital Zurich - Abteilung Entwicklungspädiatrie
Médecin Adjoint
HUG - Departement de pédiatrie gynécologie et obstetrique
Public Legitimacy of Digital Research Methods in Switzerland: a public deliberation project.
Problem and Aim
The accessibility and scope of publicly available data resulting from the growing digitalization of society led to unprecedented opportunities and challenges of public data reuse for researchers. In bioethical and social science research, such data is used to understand public sentiment about national and global issues such as vaccination hesitancy, the use of CRISPR-Cas9, the spread of fake news, public opinion about public health measures, or other political action (1,2). Despite the value of digital methods, that are “the use of online and digital technologies to collect and analyse research data” (3) and the availability of public digital data for the research community, many ethical questions that these new opportunities pose have yet to be adequately addressed:
a) citizens providing data in the public domain as, for example, on Twitter often do not know that their provided text might be used for research purposes;
b) citizens are not able to consent to this type of research except by accepting the terms and conditions of a webpage or online application (which are often not read); and
c) digital methods can disconnect the research community from the society, which can stress their relationship.
A response to these issues could be the development of a social contract between the research community and the public, to define under which conditions digital research methods enjoy public trust and legitimacy. Public trust in science and public legitimacy, as an effect of public trust, are key criteria for research (4,5). We understand public trust to be a concept that grows in the public sphere from open public discourse and as a result legitimises research action. Public trust is established in anticipation of a net-benefit for the public as well as the research community (6). Following this understanding of public trust, we hypothesise that if the public trusts and understands digital methods, such public trust legitimises scientists using digital methods.
In response, we aim to develop a public legitimacy framework for digital methods through a participatory and inclusive research method. To this aim the objectives are:
- To identify the conditions for public legitimacy of digital methods applied to publicly available data;
- To understand if public views differ depending on who is using digital methods, in what context and with what data types;
- To understand the gaps and needs for research communication about digital methods that aims to increase public trust.
The proposed project will build on a funded seed-project at the Digital Society Initiative led by Felix Gille. Since concepts of trust are culture-specific, it is important to expand our efforts to other language regions. The joint UZH-UNIGE call provides an excellent opportunity to leverage the ongoing efforts, to create synergies, and to assess the generalizability of initial findings from the German-speaking area across Switzerland. The funded project runs from January 2022 for 12 months. Funded with 10.000 CHF, the project allows us to run four citizen fora in the Kanton of Zurich. With the funding of the UZH-UNIGE call, the aim is to establish a long-term work relationship to continue to engage with the Swiss public on matters of legitimacy, public trust and ethics applied to digital society more broadly. This continuation is important, as we anticipate that with the advancement of digital methods and digital society, we will need to discuss on a continuous basis the public-research relationship.
Methods
We propose to run 5 one-day in person public deliberation fora in Switzerland and to initiate ongoing public online fora on healthcare related issues on the Forum for Global Health Ethics (7). The public deliberation method with the use of citizen fora allows ordinary citizens to give their voice in, for example, policy or other political decision processes (8,9). We will recruit about 20 citizen participants for each forum via our own existing networks, sport clubs, primary schools and social clubs. Each forum day will consist of different activities facilitated by four researchers and will last for about six to seven hours, that includes breaks and catering. If COVID-19 measures will not allow us to meet in person, we will transfer the format to an online deliberation. As we plan the fora in the summer season of 2022 and spring season of 2023, we are hopeful that we can facilitate the workshops in person. A lottery for vouchers will be an incentive for participants to take part in the citizen fora.
We will frame the fora with a carefully selected range of case studies (see the exemplary list below). The case studies will be used to stimulate participants’ discussions (10) as they all employ automated digital research methods and make use of publicly available data. Importantly, they will differ in terms of a) context, e.g. healthcare, cyber security or political science; b) involved actors, e.g. universities, public or private actors; c) data type, e.g. tweets of the general public, tweets of professionals, sensitive data from dating platforms, or policy documents; and d) purpose, e.g. using digital methods for prediction purposes or for better understanding a disease. This spread of variables allows to understand if public views differ depending on who is using digital methods, in what context and with what data type. In addition, we will collect descriptive data about the participants. We will record the citizen fora and synthesis the results with active involvement of citizens. After half of the citizen fora are completed, we aim to re-evaluate the methods and potentially refine the case studies. This will allow us to test and validate first findings. We will seek ethical approval at the University of Zurich/University of Geneva.
Examples of case studies:
• CRISPR-Cas9 (Sentiment analysis of Tweets / Hashtag analysis / Thematic probing)
• Visual risk communication of Covid-19 (Qualitative coding of Tweets)
• Vaccine hesitancy (Qualitative coding of Tweets)
• Fake News (Qualitative coding of Tweets)
• Selects Medienstudie 2019 (Sentiment and thematic analysis of Tweets)
• Evolution of currency exchanges in underground networks (Tracking of capital in Darknet)
• Policy analysis (Thematic analysis)
• Dating apps (Thematic analysis)
University of Geneva
University of Geneva
University of Zurich - Medical Faculty
University of Zurich
University of Zurich
University of Zurich
University of Zurich
Self-efficacy & mental health during the COVID-19 pandemic
The COVID-19 pandemic poses a serious challenge to individuals’ mental health. In particular, the COVID-19 pandemic bears all features of stress, which is classically described as a response to something novel, unpredictable and uncontrollable [1]. A significant following wave of psychological disturbances and mental disorders triggered by the pandemic is still expected to arise and will confront us within the next years [2]. In this societal context, a better understanding of factors that underlie resilience to maintain mental health are urgently needed. Self-efficacy, i.e. the perception of having the capacity to cope with adverse events, is a key factor underlying healthy functioning and emotional well-being. How self-efficacy may be related in maintaining one’s mental health in the context of the current pandemic is the main objective of this proposal.
The labs of Profs Rimmele (University of Geneva) and Kleim (University of Zürich), who are together applying for this grant, both have longstanding experience in emotion, stress and memory research, both in the lab as well as in the clinic. For the current proposal, we plan to combine basic research on the psychology and neuroscience of emotion, stress and memory (Prof. Ulrike Rimmele, Emotion and Memory Lab, Faculty of Psychology and Education Sciences, UniGE) with clinical research on resilience (Prof. Birgit Kleim, Experimental Psychopathology and Psychotherapy Lab, Dept. of Psychology/ Psychiatry UZH). More specifically, this proposal will benefit from combining the recent developments in our laboratories, i.e. advanced emotional memory paradigms and emotion regulation strategies [3, 4] with an innovative intervention of self-efficacy on coping, memory and mental health [5, 6].
We further aim to make our collaboration international by additionally collaborating with Prof. Adam Brown (New School, New York), who brings to the project his research focus on global mental health [7, 8] and self-efficacy [9-11]. Profs. Brown and Kleim Birgit’s labs have already established a strong collaboration, which includes a history of co-publishing and international educational exchanges.
At the University of Geneva, this project will be embedded within the Center of Affective Sciences (CISA), the Faculty of Psychology and Education Sciences (FPSE) as well as the Center for the Interdisciplinary Study of Gerontology and Vulnerabilities (CIGEV). The CISA as a world- leading center on emotion, the CIGEV as a center studying vulnerability together with the Psychology Dept. of UniGE and UZH and the Psychiatry Dept. at UZH present the best possible environment to conduct the present proposal.
We propose the following three studies:
First, we will conduct a large-scale web-based study in Swiss citizens, possibly worldwide, on self-efficacy and self-efficacy (SE) autobiographical memories in the pandemic (Study 1). This study will extend previous research on self-efficacy and coping during the pandemic (e.g. Ritchie et al. [12]) by focusing on unique content of self-efficacy autobiographical memories. We will thus collect specific information on what self-efficacy memories individuals have experienced during the pandemic and how these are related to individuals’ mental health and coping with the pandemic. Second, in a lab study, we will examine how a self-efficacy intervention may affect coping with a stressor and influence memory under stressful conditions in healthy individuals (Study 2). Third, moving to the clinical arena, we will in a clinical feasibility study investigate whether a SE autobiographical memory training can be helpful to patients who are most affected by severe trauma and symptoms of posttraumatic stress disorder (Study 3). In the clinical feasibility study, we will build on our own pilot results and investigate feasibility and effects of a face- to face intervention with an app-based training of recalling and vividly imagining self-efficacy memories and their effects on emotion, stress experience and psychological symptoms. All three studies build on a unique work already conducted in both labs and on joint conceptualizations, which will now be effectively combined.
At UniGE and UZH, we will include junior investigators and combine our ideas and results with teaching and public science talks in order to disseminate our findings. The studies will be presented on the laboratories’ website, which will also provide useful links to publications and resources relevant for this project. These websites will also be used to disseminate findings to the wider public and research community. We also aim to publish the findings of the studies international peer-reviewed scientific journals. To further increase the societal transfer of our research, we are planning to give workshops on our research findings by working together with Lifegarden (https://www.life-garden.org/wer-wir-sind-1).
In addition, we aim to make our findings known by national and international initiatives of public health relevance of which we are members, e.g. the Swiss Stressnetwork (www.stressnetwork.ch), the DynaMORE project (Dynamic Modelling of Resilience https://dynamore-project.eu/), INTRESA (https://intresa.org/what-is-resilience/) and other science-based consortia and strategic developments.
This will allow to bring this project’s findings to the public domain and disseminate clinical implications to the public in a prevention and resilience framework.
Taken together, this project initiates a new line of collaborative research between the Universities of Zürich and Geneva and the New School in New York with a great potential to be continued in further research projects (e.g. SNF or EU-funded). This will strengthen research collaborations between UZH and UniGE and likely have an important impact on global mental health.
References
- Goldfarb, E.V. (2020) Participant stress in the COVID-19 era and beyond. Nat Rev Neurosci 21 (12), 663-664.
- Diaz Hernandez, L. et al. (2021) The effect of COVID-19 on mental well-being in Switzerland: a cross-sectional survey of the adult Swiss general population. BMC Fam Pract 22 (1), 181.
- Antypa, D. et al. (2019) Suppressing but not intensifying emotion decreases arousal and subjective sense of recollection. Emotion 19 (6), 950-963.
- Mihaylova, M. et al. (2019) Better memory for intrinsic versus extrinsic details underlies the enhanced recollective experience of negative events. Learn Mem 26 (11), 455-459.
- Paersch, C. et al. (2021) Recalling autobiographical self-efficacy episodes boosts reappraisal-effects on negative emotional memories. Emotion.
- Heyen, J.M. et al. (2021) Multimodule Web-Based COVID-19 Anxiety and Stress Resilience Training (COAST): Single-Cohort Feasibility Study With First Responders. JMIR Form Res 5 (6), e28055.
- Kormendi, N.M. and Brown, A.D. (2021) Asian American mental health during COVID-19: A call for task-sharing interventions. SSM Ment Health 1, 100006.
- Bagrodia, R. et al. (2018) Crucial need to improve mental health research and training for human rights advocates. Lancet Psychiatry 5 (6), 466-467.
- Brown, A.D. et al. (2012) The impact of perceived self-efficacy on mental time travel and social problem solving. Conscious Cogn 21 (1), 299-306.
- Brown, A.D. et al. (2012) The impact of perceived self-efficacy on memory for aversive experiences. Memory 20 (4), 374-83.
- Brown, A.D. et al. (2016) Enhancing self-efficacy improves episodic future thinking and social-decision making in combat veterans with posttraumatic stress disorder. Psychiatry Res 242, 19-25.
- Ritchie, L. et al. (2020) Goals and Self-Efficacy Beliefs During the Initial COVID-19 Lockdown: A Mixed Methods Analysis. Front Psychol 11, 559114.
Professor
New School New York - Psychology
Enhancing stress resilience in society with a data-driven predictive model
Policymakers turn to science for insights about how to improve citizens’ quality of life. Stress-related disorders are the leading cause of disability worldwide and have an increasingly high socio-economic burden on companies and healthcare systems. While the damage caused by these disorders can be quantified (for example via hospitalization numbers), combating their devastating effects requires early identification and prevention. Unfortunately, a robust and precise method to quantify current and future population stress-related mental-health status does not exist. This project will lay the foundation for a robust quantification and early prediction of the swiss population’s stress related mental health status.
The crucial advancement of the proposal is the use of large scale neurophysiological and behavioural measures in a representative Swiss population sample of all age groups. The combination of these measures with standardized mental health surveys via a smart-phone app, will engage the citizen participants with scientific research and allow to build a predictive model of stress-related symptom trajectories for policy making and large-scale interventions. The project will employ a novel neurophysiological index of individual stress resilience which is easy to use at all ages and which will allow objective quantification beyond self reports. After successful completion at the UNIGE and UZH, the project aims to expand to further Swiss Cantons and beyond Swiss borders.
Senior Research Associate
University of Zurich - Economics
Societal Acceptance of Drones in Urban Switzerland (SADUS)
The deployment of high-impact technologies, such as drones, touches upon a number of ethical and societal issues, it is of paramount importance to establish a knowledge base on this topic. Currently, however, there is a lack of empirical knowledge on the prevailing perceptions about, and attitudes toward, urban use of drones, both in the mainstreamed public discourse and in the scientific community. This epistemological lacuna suggests a lack of awareness to the normative implications, where issues pertaining to access and equity, benefit sharing, harm and risk, consent, allocation of public resources, job loss, etc. may be overlooked. Further still, directly or indirectly, these issues have profound societal impacts on public policy setting and individual wellbeing. The increasing demands and high potentials of drones used in urban environments, hence, requires nuanced understandings about the technicalities of the technology, the ethical risks associated to it, the regulatory frameworks within which it operates, and ultimately the societal acceptability of its deployment at scale. Against this backdrop, interdisciplinary research encompassing expertise from robotics, public health, humanitarian studies, as well as the ethical, legal and social implications of technology, is needed to bring light to the topic. In this project, we aim to connect science with society and politics for a more resilience world through collaborations with domain experts and industry and government stakeholders.
Situated in the context of a larger research project, this pilot study will focus on the “medical drones” used for health service delivery, including the transportation of both goods and humans. Around the globe, drones are being increasingly deployed to deliver medical supplies in resource-constrained settings or hard-to-reach areas. Examples include lab samples, blood products, vaccines, and emergency medicines. In Switzerland, the case of “air ambulance” not only promises citizens to delivery door-to-door health services over lakes or mountainous areas, but also to transport non-urgent patients between hospitals. However, as indicated above, there is a need for clearer framework conditions in scaling the use of urban drones to improve usability. To this end, both the Canton of Geneva and the Canton of Zurich have strong interests in understanding the societal acceptance aspect of autonomous systems used in urban settings – in light of future mobility and smart cities, as well as digitalization and innovation more broadly. Our research strives to establish a contextualised empirical knowledge base on this topic, by proactively engaging science with society through evidence-based research and stakeholder-oriented outreach activities.
The pilot study will be led by Dr. Ning Wang, Research Fellow of the Digital Society Initiative at University of Zurich (UZH), in collaboration with Prof. Karl Blanchet, Director of the Geneva Centre of Humanitarian Studies at the University of Geneva (UNIGE), across 15 months. This collaboration emerged from, and is a natural extension of, an ongoing research exchange between the two researchers supported by the UZH-UNIGE Strategic Partnership Program in September 2022. Given its unique topicality and time criticality, the Canton of Zurich has committed strong support since the inception of the project. Likewise, the Canton of Geneva has conveyed significant interest in the acceptability of the “air ambulance” application. Apart from the core research team, partnerships have also been built with a number of key stakeholders, including academic institutions, industry members, public administration and regulatory authorities, special interest groups and think-tanks. The UZH-UNIGE Strategic Partnership Grant, hence, will provide a seed fund for us to kick-start the research and to continue with the subsequent grant applications. As such, the pilot study proposed in this application plays a pivotal role in the preparation for, and successful launch of, the larger research project in 2023.
Prof
Geneva Centre of Humanitarian Studies - Faculty of Medicine