Research Group Village of the Ludwig Boltzmann Gesellschaft in cooperation with the Medical University Innsbruck
Children of parents with a mental illness (COPMI) often need additional supports to lead the happy and healthy lives they desire. In some cases though, those supports are either not available or not found by families, resulting in negative long-term outcomes for these children. This four-year research project aims to increase identification and strengthen formal and informal supports around children when their parents have a mental illness. This project will be co-developed with stakeholders and will implement and evaluate two practice approaches, focused on the child and on principles of collaborative care. The project utilizes a realist framework (as well as implementation science principles, and the theory of symbolic interactionism) and mixed-methodologies, and involves numerous data collection methods including: literature reviews, questionnaires, focus groups, interviews, and observations to determine the impact and benefits of providing increased supports for COPMI in Austria.
A perfect family? When one parent suffers from a mental disorder, the facade can quickly crumble. The father is sick. Maria often heard this sentence. Don't talk to him, don't contradict him, a survival strategy learned early on, when you're a child, and you notice that other children seem to live much more carefree lives than you do. Maria Fischer tells us what this means and how sport, a healthy attitude and a strong mom gave her strength..
Angelika Pfauser talks about her experiences. Life with bipolar disorder is not exactly easy. When closeness becomes unbearable, self-esteem is at its lowest, you are not perceived as you need to be. And then you have to take responsibility for the children you love so much, for whom you want to do everything right. Having to function and still not always being able to do it. A seemingly hopeless situation. How does it feel?
STEERING COMMITTEE
LBG & host institution
The Steering Committee (SC) consists of one representative each of the Ludwig Boltzmann Gesellschaft and the host institution. The Research Group Village Research Group is located at the Medical University of Innsbruck. The host institutions provide the research groups with the necessary infrastructure, support and networks.
The SC meets twice a year and, based on the recommendations of the Advisory Board (AB), agrees to further activities of the LBG Research Group Village and to the course of the Research Program in Mental Health.
ADVISORY BOARD
1x Open Innovation in Science expert
2x Experts by experience
3x Experts in the field (thereof one PI-Peer)
The Advisory Board (AB) is an independent advisory body that evaluates the LBG Research Group on the basis of its research activities and ensures the (scientific) quality of research projects undertaken. The AB consists of an Open Innovation expert, two experts with lived experience (adolescents and/or young adults), and three experienced experts in the field of mental health (e.g. from the fields of psychology, psychiatry, social sciences, health sciences, etc.). These experts are also experienced in participative research and community involvement in research processes. Of their number, one expert may be a peer of the Principle Investigator. The Research Group & Relationship Manager and Principle Investigator report to the AB based on the following structure:
The AB meets twice a year and reports to the SC on the progress and activities of the LBG Research Group Village.
Research Group &
Relationship Manager
The Research Group & Relationship Manager (RRM) supports the LBG Research Group Village with implementation of Open Innovation in Science activities, and particularly with community involvement in research activities, networking with cooperation and network partners, capacity building and management tasks (monitoring, reporting, budgeting). Twice each year, the RRM provides the AB with a progress report on relationship management and planned activities.
Competence Group
(Expert by experience)
The Competence Group (CG) is made up of 6 experts by experience (children of parents with a mental illness), who advise and reflect with the Research Group on the planned measures and research activities. The purpose of this is to ensure affected community involvement throughout the research process. The CG meets once a month with the Research Group.
Principal
Investigator
The Principal Investigator (PI) leads the LBG Research Group, consisting of Co-Investigators and a team in Austria; he or she is responsible for coordinating and handling research activities, and for budget and personnel matters. Twice each year, the PI provides the AB with a progress report on the Research Group and planned activities.
Team and
Co-Investigators
The Co-Investigators (CoI) form part of the core team and coordinate work packages as described in the research concept. CoIs remain anchored to their organization abroad and meet with fellow members of the LBG Research Group in Austria twice a year. Virtual conferences and meetings must be arranged in addition.
The team in Austria, consisting of doctoral candidates, students and other specialists, participate in implementation of the research concept and are supervised by the Principle Investigator. The Principal Investigator, the Co-Investigators and the Team together constitute the LBG DOT and Village Research Group.
Cooperation- and Network Partner
The LBG Research Group is embedded in a dynamic network that consists of academic and non-academic Cooperation Partners and Network Partners.
Cooperation Partners are institutions with which separate cooperation agreements are concluded during the term of the Research Group; both financially and through their expertise, they contribute to the research program extended under the cooperation agreements.
Network Partners are institutional application partners (NGOs, patient organizations, etc.) with which separate network partner agreements are concluded during the term of the Research Group; they permit access to patients, relatives, etc., but do not make a financial contribution to the research program.
Ludwig Boltzmann Gesellschaft Research Group Village, Medical University of Innsbruck
Innsbruck, Austria
Jean is the PI of the ‘Village Project’ as part of the Mental Health Research Program at the Ludwig Boltzmann Geselleschaft based at the Medical University of Innsbruck. She is a social scientist and applied linguist in child health research with expertise in multiple analytical methods. She uses qualitative approaches to explore how people experience and are impacted upon by their interactions with the healthcare system. Before moving to Austria in January this year, she was a postdoctoral researcher at the Murdoch Children’s Research Institute in Melbourne, Australia. Her research analysed clinical-decision making regarding genomic testing for children. Jean completed her PhD in the area of healthcare communication and clinical genetics in 2015 and has lectured on topics related to research methods, genetic counselling, and applied linguistics in healthcare. She maintains international relationships with Australia and is an honorary fellow with The University of Melbourne (Department of Paediatrics) and Murdoch Children’s Research Institute (Genetics Education and Health Research Group). The current ‘Village Project’ will focus on the way in which the system identifies and responds to children who might be at-risk and need extra support when their parents have a mental illness. This project aims to improve identification of children at-risk and strengthen both formal and informal support around the child.
Ludwig Boltzmann Institute for Health Technology Assessment
Vienna, Austria
Ingrid is the deputy director of the Ludwig Boltzmann Institute for Health Technology Assessment in Austria and in this position and aims to strengthen the role of HTA in the Austrian health care system. Her research focuses on health economics. In particular, Ingrid addresses the question of efficient and rational use of resources and how to make a publicly funded health care system sustainable. In terms of method, she is an expert in economic evaluation which deals with the relationship of costs and effectiveness of interventions. Apart from research Ingrid has worked in the field of biomedical sciences in a hospital and as a health economist in the Austrian social health insurance. Hence, she has knowledge on processes in within providers, payers and decision makers in health care.
An important contribution in all stages of the ‘village project’ will be Ingrid's knowledge on the Austrian health and social care system and on the mental health care structures in particular. She is responsible for the participatory process for developing the support programmes including stakeholders, most importantly people with lived experience. Her knowledge on methods in HTA, in particular the know-how on economic evaluation will contribute to the literature reviews and to the evaluation of the support programmes that we develop in the project.
School of Rural Health, Monash University
Melbourne, Australia
Mel is a researcher in the field of children of parents with a mental illness (COPMI) since 2003. She has over 30 peer reviewed publications in the field and received over $6M in funding to research the needs of families, parents and children where a parent has a mental illness and substance abuse issues. More recently Melinda has focused her work on engaging government and service providers in translation to practice strategies for adult mental health and social care systems of care to better meet the needs of parents with mental illness and their children. Her work has led to the development practice guidelines for the health and welfare system to address the impact of mental illness, trauma, drugs and alcohol, and gambling issues in families. Her most recent project is a Victorian Government funded large randomized control trial of the Let’s Talk About Children intervention that aims to reduce the intergenerational risk of mental illness for parents with mental illness and their children. Melinda is currently the sub-group chair of the Prato International Research Collaborative on Systems Change Worldwide for COPMI, and co-chair of Let’s Talk Worldwide aimed to address international challenges integrating Let’s Talk About Children into clinical practice worldwide. Melinda has recently commenced a joint role with the Parenting Research Centre as a Senior Implementation Specialist, supporting organisations to enhance their capacity to support parents in the care of their children, particularly when there is family adversity. Melinda will lead the implementation work package for the Village project, helping to understand the needs of Austrian care system and supporting a co-design and implementation support approach to help integrate the SENSE and CVA approaches into practice.
Personal Social Services Research Unit (PSSRU), London School of Economics and Political Science
London, UK
Annette has been a researcher at the PSSRU at LSE for the last seven years. PSSRU is a research unit led by Martin Knapp, which conducts high quality research on health and social care to inform and influence policy, practice and theory. Her research is focused on the evaluation of the short- and long-term costs and outcomes of preventative interventions in (mental) health and social care. Annette's main research interests includes perinatal mental health; in her research she examined the costs of mental illness during this time and cost-effectiveness of interventions, which included the long-term impact the illness has on children. Other areas of Annette's research include: community development; third sector; parenting; learning disabilities; dementia; integration between health and social care. Over the past four years Annette has been working part-time as an economist for the National Collaborating Centre for Social Care, a partnership with PSSRU, which was funded by the National Institute for Health and Care Excellence (NICE) to develop national practice recommendations in social care. In addition to (economic) evaluation methods, her main interests are the translation of research into policy and practice. This interest leads back to earlier career experiences: Before becoming a researcher, Annette was working in managerial roles for the (mental) health and social care system in England as well as in a consultancy role for hospital management in Germany.
Annette is leading the work package that is concerned with the evaluation of the practice approaches that will be co-developed with local stakeholders during the course of the project. The evaluation will be taking a realist approach in order to understand what works for whom, under which conditions and why. Annette is particularly looking forward to the exciting challenge of working every step of the process as part of an international team on research and practice approaches that respond to local needs in Austria.
Department of Clinical Child and Adolescent Psychology, Philipps-University Marburg
Marburg, Germany
Hanna is a researcher of clinical child and adolescent psychology, as well as in the field of children of parents with a mental illness (COPMI). She has over 60 peer reviewed publications and received over €7M in funding to research needs of children and adolescents with mental disorders, and especially of families, parents and children where a parent has a mental illness. Hanna is currently the PI of the “Children of Mentally Ill Parents At Risk Evaluation” (COMPARE) that compares the effects of parental cognitive behavioral therapy (CBT) on the children to CBT plus the Positive Parenting Program (PPP) in order to establish incremental effects of supportive parenting above and beyond CBT alone. Within “The Village” research group, Hanna is one of the Co-Is, especially supporting the subprojects on giving the children a voice and dissemination of the research activities.
In her teaching, Hanna also focuses on COPMI and on how to address psychological problems of children and adolescents in a child friendly way. Together with students of psychology and the fine arts, she started a children’s picture book series by Hogrefe publishers and the children of parents with a mental illness are one of the topics.
Ludwig Boltzmann Gesellschaft Research Group Village, Medical University of Innsbruck
Innsbruck, Austria
About Me: Due to my study background I am able to view this topic form a more sociological perspective and with that comes a basic conception that allows me to represent the interests of the research group in an appropriate way to the public. Within the scope of my thesis I was investigating the factors that drive educational inheritance in Austria. The results showed that the course of education is strongly influenced by the social environment and reference persons of the individual. This interesting result is closely linked to socialization, which always takes place within a society or more specifically in the personal environment of the individual. Therefore, from my point of view the society has a special responsibility towards their less privileged members. Consequently, the approach of this project is very fascinating to me and my personal goal is to contribute to the success of this project.
Role: As project coordinator my role is multifaceted. However, the principal task is to look at the project from a birds-eye view in order to keep oversight of the current processes as well as of the planned project progress. Therefore, I work closely together with the principal investigator and the co-investigators. Moreover, I organize and support events that take place in the course of the project. In this role I am in general in charge of facilitating the flow of information between the involved stakeholders, informing the public about the project and getting outside parties interested and involved with the project.
Department of Clinical Child and Adolescent Psychology, Philipps-University Marburg
Marburg, Germany
After graduating in Educational Science with the major subject social and rehabilitation pedagogy and the minor subjects psychology and comparative cultural studies at Philipps-Universität Marburg, I'm doing the 'Marburger Modell' now, which containes the doctorate and the clinical training for becoming a child and adolescent psychotherapist.
In theoretical lectures as well as in seminars and projects regarding quantitative and qualitative social research it turned out that I enjoy scientific work a lot, which motivated me to get more involved into research. During my studies and my diverse socio-educational practical expierence and internships I was always interested in structures of social injustices and discrimination, what impact those and critical life events have on individuals and what kind of resiliences people have to cope with challenging situations.
For the purpose of early prevention I think particulaly in the life stages of childhood and youth it is important to always improve treatment concepts and social services which motivates me to make research fertile for practice as well as learn out of the practical expierences for further research.
Ludwig Boltzmann Gesellschaft Research Group Village, Medical University of Innsbruck
Innsbruck, Austria
About me: Since my studies in education science (BA) and Sociology (MA) I have been passionate about sociological theory as well as qualitative methods. I am particularly interested in questions of gender, ethnicity and the body and the process by which individuals “become” subjects. I believe that via deconstructing normative categories – that within the hegemonial discourse are often perceived as essentialist categories – one is not only able to uncover internalized hidden mechanisms of hierarchization, differentiation and normalization, but also to counteract them.
Role: As a PhD student I will be focusing on qualitative research. I hope to support the team in various areas such as qualitative interviewing, transcribing and qualitative data analysis. Part of my work will also be to devise and conduct my own research project.
Ludwig Boltzmann Gesellschaft Research Group Village, Medical University of Innsbruck
Innsbruck, Austria
About me: After graduating in tourism management, I gained two years of professional experience at Deutsche Bahn in the field of marketing and communication before turning to the master's degree course "Entrepreneurship & Tourism" in Innsbruck. There, the focus was on the dynamic interaction of tourism stakeholders and the sustainable competitiveness of tourism in the Alpine region. Through my work on regional research projects of the Faculty of Tourism in the field of data collection and processing, my interest in research was aroused. Using a quantitative research approach, I was involved in projects on the attractiveness of Tyrolean holiday destinations or on the value creation in Tyrolean tourism. The acquisition and transfer of new knowledge as well as the definition of concrete recommendations for action for current challenges encouraged me to take the path into research. From a research point of view, what particularly excites me about the Village Project is the Open Innovation in Science approach, which aims to involve stakeholders from business, politics and civil society in all phases of the research project and to develop collaborative supporting and sustainable measures. What is special about this approach is that not only does science itself benefit from it, but that the early involvement of non-scientific stakeholders also creates benefits for society. After all, being open to the ideas of others and sharing knowledge benefits research and society alike.
My role: As a Research Assistant I am responsible for all organizational and supporting activities that contribute to the success of the research project, e.g. translation of research data, communication with stakeholders or dissemination of research content and results. With regard to the research topic of the Village Project itself, I am committed to identifying affected children and families at an early stage and to enabling the establishment of a social network to support the children and if research can make a valuable contribution to this. Furthermore, I hope that the project will raise awareness of the issue among the population, but also among professionals and politicians.
Ludwig Boltzmann Gesellschaft Research Group Village, Medical University of Innsbruck
Innsbruck, Austria
About Me: For me, psychology is an immensely exciting discipline that can be applied to virtually every area of our lives. But a purely psychological perspective is not, in my opinion, sufficient to adequately grasp the social, cultural, and political phenomena of our world and an individual's position in it. There is clearly a need for interaction and collaboration between psychology and medicine, sociology, history, linguistics, biology, etc., to approach the complexity of our lives. On this basis, it is possible to develop multifaceted and realistic interventions that can contribute to stabilization and improvement of quality of life and opportunities over time in a targeted, prudent and ecological way with the respective stakeholders.For this reason, as a Clinical and Health Psychologist, NLP Master Practitioner and foster mother, I have taken every opportunity to gain a better understanding of human behavior, its backgrounds and contexts in different fields: From evaluation assignments in the recycling sector, to social psychiatric outpatient services for physically and mentally impaired people, to the rehabilitation department of the AMS and social pedagogical care work. My dissertation dealt with the living and care conditions of family caregivers.
My role: For me, the Village project is the perfect implementation of a cross-disciplinary, in-depth and positive change-oriented approach to an immensely important subject area. Children and adolescents with mentally ill parents, like their parents, need an appreciative, resource- and future-oriented support network that works with them to improve opportunities for personal development and quality of life. I have the pleasure of working in the Village project in the area of implementation and its evaluation.
Our Village Facilitators have their professional background in the social, educational and psychological fields. They are the ones in our team who work directly with the participating families. Each family is assigned a personal Facilitator who works together with them to create a support network. This network is based around the needs of the children and aims to provide support for the entire family. At the beginning of participation, the Facilitators try to get to know the family's daily life better and to understand the family situation. Subsequently, they develop a strength-based support network together with the family, which consists of informal and sometimes also formal contacts. Here it is important to point out that the network takes the individual needs of the families into account and especially those of the children.
The Competence Group (CG) is made up of 6 experts by experience (children of parents with a mental illness), who advise and reflect with the Research Group on the planned measures and research activities. The purpose of this is to ensure affected community involvement throughout the research process. The CG meets once a month with the Research Group.
Prof. Hofer participates in Advisory Board meetings as a representative of the Medical University of Innsbruck. He is director of the University Clinic for Psychiatry I in Innsbruck. In addition to scientific studies in the field of schizophrenic and affective disorders, Prof. Hofer has also worked intensively on the topic of resilience, i.e. mental resilience as well as neurocognition and social cognition in mental illness.
Participates in Advisory Board meetings as a representative of the Ludwig Boltzmann Gesellschaft. He is an expert on research and innovation strategies, research funding mechanisms and research and impact assessment. Together with the scientific director, Patrick Lehner heads the Open Innovation in Science Centers of the Ludwig Boltzmann Society (LBG OIS Center). He has been with the Ludwig Boltzmann Society since 2016, most recently as Head of Impact and Knowledge Exchange.
Heidi E. Hamilton is professor in the Department of Linguistics, Georgetown University, Washington, DC (USA) where she has taught courses on the analysis of everyday and institutional discourse and has explored interdisciplinary research questions on the interrelationships between language and health and a variety of health care issues and contexts since 1990. Her recent books are Language, Dementia and Meaning Making: Navigating Challenges of Cognition and Face in Everyday Life (2019), the Wiley-Blackwell Handbook of Discourse Analysis (2015, with Tannen and Schiffrin), and the Routledge Handbook of Language and Health Communication (2014, with Chou). She has given plenary lectures at a range of linguistics, health, and aging conferences and workshops around the world, including in Austria, Belgium, Denmark, Germany, Japan, Norway, Spain, Sweden, the United Kingdom, and the United States. Awards include Fulbright Distinguished Chair in Linguistics (Innsbruck); DAAD Gastdozentin (Berlin); and Humboldt Research Prize (Potsdam).
Erin Turbitt is a lecturer and social scientist at the University of Technology Sydney in Australia. She was a Postdoctoral Research Fellow at the National Human Genome Research Institute in Bethesda, USA from 2016-2018. Dr Turbitt was awarded her PhD from the University of Melbourne in 2014. Her research lies at the intersection of genomics, decision making and research ethics.
In her role on the Village Advisory Board, Dr Turbitt serves as a peer advisor to Dr Paul and the team. She further contributes methodological expertise through her research experience. Dr Turbitt studies the, with a focus on how families affected by genetic disorders cope and make decisions about healthcare and their involvement in research.
Clemens Blümel is acting head of the department “Research System and Science Dynamics” at the German Centre for Higher Education Research and Science Studies (DZHW) in Berlin. As a project leader, he was engaged in various national and European projects with Open Science and Open Scholarship. In his research, he deals particularly with novel formats of scholarly communication, the role of digital platforms in research as well as digitized forms of evaluation in science. At the DZHW, he currently coordinates the research cluster Open Science. Prior to his engagement at the DZHW, he developed and coordinated the Master program “Science Studies” at Humboldt University. He also worked at the Fraunhofer Institute for Systems- and Innovation Research in Karlsruhe between 2007 and 2010. Since 2018 Clemens Blümel is member of the advisory board of the Ludwig Boltzman Center for Open Innovation in Science.
Tytti Solantaus is the initiator of a national program for parents and families with mental health and other issues in Finland in 2001 and the developer of the Let’s Talk about Children –approach. The program has developed into a community program active in nurseries and schools covering educational, health, social, criminal and refugee services. Tytti Solantaus has found the LBG Village -program wonderfully ambitious and working in the Advisory Board very inspiring, giving also thoughts to bring back to Finland. The program is breaking new grounds in Austria and internationally by creating a dynamic process and a favorable societal and family context for children to grow up and families to flourish also in times of hardship. – Tytti Solantaus is Professor Emerita with a background in child psychiatry, family therapy, service development and research, currently affiliated with Mieli, Mental Health Finland.
Christian Kloß has been involved with children of mentally ill parents (COPMI = Children Of Parents with a Mental Illness) since 2005 and has been active as a speaker and author since 2007.
In 2005 he founded the first self-help group in the Rhine-Neckar region for adult COPMI.
He began his lecturing activities in 2009 in Saarland at the first event for professionals on the topic of COPMI in Homburg (Saar).
Since then, Christian has been asked to give lectures, workshops and readings.
He was involved in the initiation of the nationwide association Seelenerbe e.V. Since its foundation in 2014 he was a member of the board of directors until 2020. Since then, he is mainly responsible for website and forum administration.
In 2018 he became a member of the respective advisory boards of the research projects D.O.T. and Village, which are funded by the Austrian Ludwig Boltzmann Society.
In addition to these activities, he was represented in various publications and radio contributions on the topic of #COPMI.
Joy Ladurner is from Vienna, Austria. She represents the family/carer member perspective in the Advisory Board. Before joining the board in 2021 she was part of the Competence Group. Joy has been actively involved on a voluntary basis with HPE, the Austrian family and carer organization, since 2005. She is part of the board of the regional family organization in Vienna and enjoys facilitating two self help groups. Between 2008 and 2011 she was involved with EUFAMI, the European Federation of Associations of Families of People with Mental Illness. As a day job she works in the field of health policy and applied health research.
