Dept. of Psychiatry and Psychotherapy, Centre for Psychosocial Medicine, University Medical Centre Hamburg-Eppendorf
Dept. of Medical Psychology, Centre for Psychosocial Medicine, University Medical Centre Hamburg-Eppendorf
This research consortium is dedicated to the following aims:
Represented by MH-TRN researcher C. Mahlke, and T. Bock (UKE), MH-TRN joins forces with virtually all national partners active in participatory support, involvement, and research, who conjointly expressed their willingness to collaborate (incl. e.g.: Prof. Dr. Sebastian von Peter [Medical University Brandenburg, MHB] & Prof. Dr. Martin Heinze [MHB], EX-IN Germany [German association of experienced involvement], EUTB [Information and Social Support Center for people with disabilities and their relatives; Michael Schweiger], Regional and National Service User Association [LPE, Jurand Daszkowski & Heinrich Niebuhr; BPE], Regional and National Association of Carers [LApK, BApK; Dr. Hans-Jochim Meyer]).
The principle of Trialogue, with service users, carers and mental health professionals as equal partners, was initiated at UKE in 1989 by Prof. Dr. Thomas Bock and Dorothea Buck (holocaust survivor; writer and artist; diagnosed with schizophrenia by the age of 19), (co-founder of the National Service User Association). They pioneered psychosis seminars (i.e. forum that involves interchange at eye-level allowing for insights from different perspectives: i.e. from individuals who experience[d] psychosis, healthcare or other professionals, students, relatives, etc.) an approach that gained international attention. Building on Trialogue, the UKE was involved in the development and delivery of the peer support training “Experienced-Involvement (EX-IN)”. Building on this initiative, peer support has rapidly spread: EX-IN Germany has 35 peer support training locations all over Germany today. Within the long and fruitful collaboration, further training entities for family peer support, and a research training module for peers, have been developed. Peer support for individuals with SMI has successfully been evaluated under the lead of C. Malke within psychenet – HAM-NET (see mental healthcare models) impacting upon the national treatment guidelines for individuals with severe mental health conditions. Peers were officially recognized as a professional group by the Federal Joint Committee (G-BA). Research is conducted on different levels of participation: A collaborative research training for service users and carers was developed and manualised to provide an understanding of general research methods, processes and structures, to be able to contribute to advisory boards and committees, and to translate ideas of individuals with lived experience into (own) research projects.
O. von dem Knesebeck contributes with his national surveys and health literacy interventions to the assessment and mitigation of stigmatizing attitudes towards individuals with serious mental illness. It is known that stigma, both at a societal level and self-stigma, leads to worse outcomes. Stigma and negative labeling of individuals, especially those with serious mental illness, is still a common, yet often not sufficiently recognized problem in our society. Hence, O. von dem Knesebeck’s and C. Mahlke’s and their associated network’s research together aims at sensitizing people towards an open, tolerant and balanced view on mental health and illness, which affects every third person in Germany.
I. Scholl is an early career scientist with a junior BMBF (Federal Ministry of Education and Research) research group, whose mission is to improve and promote patient-centred care. Hereby, the patient’s individual, specific needs and desired outcomes are the driving force in therapy. This does not only apply to aspects of physical health, but also emotional, cognitive/ mental, spiritual, social, and financial aspects and perspectives of health service users are considered. In this realm, she and her colleagues, involving M. Härter, developed tools to assess and assure shared decision-making, which is a core aspect of patient-centred care. They contributed significantly to the implementation of patient-reported experience measures (PREMs), which explicitly focus on the service user’s perspective and experiences while receiving care, including their satisfaction with services. This is complemented by assessments that are ideally suited to assess whether service users’ desired and expected outcomes (= patient-reported outcome measures; PROMs) are achieved in therapy. PROMs and PREMs are also developed by many other researchers of the MH-TRN, e.g. B. Löwe, T. Lincoln, and A. Karow.
ASPIRED: Assessment of Patient-Centredness through Patient Reported Experience Measures (PREMs). Tthis is a 5-year-project lead by I. Scholl to investigate to which degree the current healthcare reality matches the expectations and needs from the perspective of service users. The project also investigates in how far patients are involved in decisions, and evaluates the transparency of information and communication of healthcare providers. Part of the project is also the development and optimisation of tools to assess user satisfaction and expectations. These topics are highly relevant for treatment adherence and well-being, including feeling respected and empowered in one’s individual healing process.
HoPe. This project aims at investigating whether peer-assisted home-treatment for individuals with serious mental illness is more effective than home-based treatment as usual. This study is lead by C. Mahlke, Prof. Dr. Sebastian von Peter, and Prof. Dr. Thomas Bock, supported by experienced involvement (i.e. trained peer care workers), and conducted in cooperation with several national partners (e.g. clinics in Berlin & Ulm).
Development and evaluation of eHealth interventions for the destigmatization of suicidality. This project is lead by M. Härter, with O. von dem Knesebeck as PI for a national survey on health literacy and stigma concerning suicidality (i.e. ‘suicide literacy’). The general goal is to inform the public about how suicidality emerges, to de-shame and de-blame affected individuals and their social network, and to offer low-threshold support.
UPSIDES – Using Peer Support in Developing Empowering Mental Health Services. This project is coordinated by Prof. Dr. Bernd Puschner & Dr. Annabel Müller-Stierlin, with C. Mahlke involved as PI. It is an international cooperation with the aim to investigate and implement world-wide standards and establish peer support in order to improve the situation in low- and middle income countries, where there is often a general lack of therapy for individuals with serious mental illness. The project involves partners such as the World Health Organization (WHO), patient- and carer-associations, social support/ rehabilitation associations and centres, and international partners from India, Israel, Uganda, Tansania, and the UK.