Day 1: FI – Research, ethics, guidelines and challenges
- 09.00: Theoretical and moral perspectives (Elleke Landeweer)
- Outcomes of the Systematic Review
- Roles and dilemmas
- Moral work of families
- Arguments for inclusion
- 09.45: Comments on this work from experts by experience. Karen Machin, expert by experience UK
- 10.00: Plenary discussion
- 10.15: Coffee break
- 10.30: Presentation of results from the PET project: family perspectives on FI & patient perspectives on FI (Reidun Norvoll)
- 11.15: Comments and discussion
- 11.30: Presentation UK. Guidelines and challenges in practice. What knowledge is still missing? (Julie Ridley & Karen Machin)
- 12.00: Lunch
- 13.00: Presentation The Netherlands. Guidelines and challenges in practice. What knowledge is still missing? (Cisca Goedhart & Bert Stavenuiter)
- 13.30: Presentation Norway. Guidelines and challenges in practice. What knowledge is still missing? (Bente Weimand)
- 14.00: Coffee break
- 14.15: Brainstorm topics for future research (in smaller groups): What are the most important knowledge gaps? Which moral topics deserve further attention?
- 14.45: Plenary presentation of results of the brainstorming in small groups, and plenary discussion. (Chair: Elleke Landeweer)
- 15.15: Summing up.
Day 2: The NFR project – implementing the national guidelines on family involvement during severe mental illness
- 09.00: Presentation of goals and strategies/methods of the NFR project (Reidar Pedersen). Expectations regarding participation and benefits.
- 10.00: Questions from the audience
- 10.15: Coffee break
- 10.30: Brainstorm/workshops in smaller groups:
- Current status of the implementation of the national guidelines in your health care institution (where you work or receive services)?
- What are the most important barriers and facilitators to implementing the FI-guidelines?
- 11.30: Plenary presentation and discussion
- 12.00: Lunch
- 13.00: Brainstorm/ workshops in smaller groups
- How to deal with barriers and maximize facilitators to FI during SMI?
- Collecting examples of good practices for implementation of FI.
- 14.00: Plenary presentation of results of discussion
- 14.30: Summing up and evaluation
Speakers:
Cisca Goedhart (NL) is the chair of the Dutch a national organisation for family of people living with mental health problems, named Labyrint-In Perspectief. She has been a volunteer for this organisation for 25 years. She also works as head of the project managers at MIND, the national association for client- and family organisations. She has participated in the development of several national guidelines and directives in mental healthcare, such as the guideline for borderline personality disorder and the quality standards for elderly with mental health problems. Her focus is on family participation and support, and specializes in support to children with parents who suffer from mental illness, including adults who grew up in such a family and now suffer from this. She was a co-author and part of the project group that has written the national guideline on family involvement in mental health published last year.
Elleke Landeweer (NL/NO) has a background in philosophy and specialised in family ethics, empirical ethics and responsive evaluation in the field of mental health. She works at the centre for medical ethics at the university of Oslo with a Scientia Fellow scholarship where she studies the moral context of family involvement in mental healthcare, especially how families (including patients) and professionals can deal with their moral challenges.
Karin Machin (UK) works freelance on a combination of short term posts and longer term part-time roles. She has worked across the UK for organisations including the Institute of Mental Health (IMH) in Nottingham, Mind, SCIE, University of Hertfordshire, University of Central Lancashire and ImROC. She is interested in a range of issues related to mental health and wellbeing across the age range, with a current research focus on the influence of digital technology on the development of peer roles and recovery. She was a founder member of the peer training team at the IMH, co-developing the series of modules related to peer support.
Reidun Norvoll (NO) is a senior researcher at the Work Research Institute (AFI), Research Group of Innovation and Enterprise Development, at the Oslo and Akershus University College of Applied Sciences. She has a doctorate in sociology focusing on the organisation of mental health care through an ethnographic study about seclusion in psychiatric acute wards. She has been the project leader for several projects in mental health, including action research, qualitative studies involving staff, patient/users and carers in mental health as well as research and dissemination on social sciences and cultural perspectives on mental health and mental health care.
Reidar Pedersen (NO) is the Head of department at the Centre for Medical Ethics, UiO since January 2015. His background is in medicine (MD) and philosophy (MA, BA). His main research area is ethics and communication in health care, including informed consent, coercion, and family involvement.
Julie Ridley (UK) is a reader and senior researcher in applied social Sciences and has 30 years' experience of leading and working on health and community care research focusing on social justice, diversity and social inclusion. Specifically, this has included researching direct experiences, satisfaction and opinions of policy implementation and practice designed to promote choice, flexibility and control, as well as community participation. Inclusion of service users, not only as research participants, but as peer researchers fully involved in all aspects of research, has been central to much of her work.
Bert Stavenuiter (NL) is the director of the Dutch organisation of relatives of people who are susceptible to psychosis, named Ypsilon, for more than 20 years. He has participated in the development of several national guidelines and directives in mental healthcare, such as the guideline for schizophrenia and psychosis, quality standards and self-management. His focus has been to foster family participation and involvement as well as family support. This resulted in collaborations and editing of several handbooks and manuals in Dutch (i.e. Handbook Schizophrenia, Handbook Early Psychosis, Handbook F-ACT and manual Active Recovery Triad) He was a co-author and part of the project group that has written the national guideline on family involvement in mental health, published last year.
Bente Weimand (NO) is a senior researcher and head of the research group “Experiences of Service Users and Carers” at the R & D Department at the Mental Health Division, Akershus University Hospital in Norway. Her research interests include the impact of mental illness within families and how to promote a meaningful and effective engagement of service users, carers and the public in practice/services, research and education. She co-leaded the Norwegian Health Directorate’s development of national guidelines for health professionals working with service users’ relatives within Norwegian health-and care services, which were launched January 2017. Dr Weimand is a member of various Scandinavian and international research networks that focus on children as relatives, parental mental health, and family mental health. She is currently Chair of the Prato International Research Collaboration for Change in Family Mental Health.