Collaborating with Families of Persons with Serious Mental Illness

1. Working Together to Manage Mental Illness Collaborating with Families of Persons with Serious Mental Illness Nicole Chovil, PhD, Director of Education British Columbia Schizophrenia Society on behalf of BC Partners for Mental Health and Addictions Information February 2006

2. Purpose of Workshop To begin moving towards a more family inclusive model of managing mental illness by • Increasing awareness about needs of families who provide caregiving and support; • Examining what is meant by collaboration; and • Exploring ways professionals can work with families

3. BC Schizophrenia Society and BC Partners for Mental Health & Addictions Information BC Schizophrenia Society provides education and support to families dealing with mental illness through our Provincial Office, Regional Coordinators and volunteer Branches BC Partners for Mental Health and Addictions Information is a collective of 7 mental health and addictions agencies working together since 2002 to provide quality, evidence-based information on mental health and addiction topics www,bcss.org www,heretohelp.bc.ca

4. Outline of Workshop: Morning Session 9:00- 9:30Families of People with Mental Illness and Support Provided 9:30-10:00 Best Practices in Family Involvement 10:00-10:15 Break 10:15-10:45 Research on Benefits of Family Involvement 11:00-11:15 Collaboration perspectives and barriers 11:15-12:00 Video – No Flowers or Chocolates *Times are approximate only*

5. Outline of Workshop: Afternoon Session 12:00-12:30 Lunch 12:30- 1:30 Presentations by Family Member and Person With MI 1:30-2:00 Confidentiality (discussion) 2:00-2:30 Strategies for Sharing Information with Family Caregivers 2:30-2:45 Break 2:45-3:30 Working with Families (small group exercise) 3:30-4:00 Wrap-up and Evaluation

6. Families Families are often the main support people for a person with MSI Immediate family members as well as extended family and families of choice “Anyone committed to the care and support of a person with mental illness”

7. Families Research indicates that • More than 50% of consumers livewith their families • Seventy-seven (77)% have regularcontact with their families • Families tendto be primary members of consumers' support networks Marshal & Solomon, 2003 • Eighty-one (81)% of (homeless) family members had an in-person visit or spoke on the telephone with their relative in the month prior to the study Pickett-Schenk, 2000

8. Effects of Mental Illness on Families • Disrupted family relationships • Stigmatization • Social isolation • Disruption of household routines • Emotional reactions • Stress • Exhaustion • Inability to plan for the future • Concern about potential violence

9. Supportive Roles of Family • Assisting with daily tasks of living • Helping person attend appointments and stay on prescribed medication • Preventing or minimizing exposure to stressors • Finding community supports • Advocating on behalf of family member • Providing financial assistance • Providing emotional and social support • Providing crisis support • Providing and enhancing self-esteem of family member

10. Needs Change Over Time Refer to Handout “The Changing Needs of Family Caregivers” • Assessment/Diagnosis • Beginning of Treatment • Ongoing Caregiving and support

11. Best Practices: Family/Consumer/Professional Partnership in the Treatment Plan • Actively involve families in the treatment plan, the discharge plan and rehabilitation plan when appropriate • Encourage the person with mental illness to see the benefits of including the family • Solicit background information from families regarding history, medications, etc. • Provide education and information about confidentiality issue to professionals, consumers, and family members. Best Practices for BC’s Mental Health Reform, 2002

12. Research on Benefits of Family Involvement • hastens client recovery from mental illness and addiction • lowers the risk of mortality • reduces reliance on health care services • reduces the rate of rehospitalization and relapse • enhances medication compliance • bolsters client interpersonal functioning and family relationships • A collaborative approach results in greater satisfaction with health care Centre for Addictions and Mental Health, 2004

13. Principles of Meaningful Involvement of Families • Recognition of the role of the family • Be treated with understanding and respect • Be taken seriously when expressing concerns • Be provided information • Be able to provide relevant information • Be included in care • Contact information • Rapid response especially an emergency • Be consulted about discharge • Have help for problems related to caring • Be assured of culturally accepted treatment options

14. Strategies for Family Meetings

15. What Do We Mean by Collaboration? A process that individuals involved in a system of care engage in to ensure best possible care for the client Partnership that brings together the different “expertise” that professionals and families have to offer Requires mutual respect, clear communication and sustained involvement

16. Morning Break

17. What Do We Mean by Collaboration? Family’s definition may differ from that of professionals Family’s Definition? Equal decision makers Involvement throughout Professional’s Definition? Family as information source Providing support/education to family

18. Barriers to Collaboration • Uncertainty, lack of skills or experience in working with families • Unsure as to what outcomes to work towards • Lack of understanding about impact of mental illness on families and burdens faced by families • Lack of time; limited resources • Confidentiality • Beliefs about family and mental illness (outdated theories)

19. Co-operation: The Donkey Story..

20. Making Confidentiality Work For Everyone • It is possible to respect a person’s privacy and still negotiate effective, practical communication with family caregivers • Confidentiality is not a blanket concept. Research studies indicate that most clients are comfortable sharing some information. • Amount and type of information will vary depending on involvement of family

21. Video: No Flowers or Chocolates The following video was produced by the Bouverie Centre of Latrobe University, Australia. Copies of this video and others in the Family Sensitive Training Series may be purchased athttp://www.latrobe.edu.au/bouverie/mentalhealth/products.html Segments of the videos may be previewed at:http://www.latrobe.edu.au/comet/mpu/mpu_recent_projects.html

22. Lunch

23. Sharing of Confidential Information Start as you hope to finish. Create an infectious expectation that information will be shared. In practice this means clarifying what can and cannot be talked about.

24. Questions to Guide Decisions About Confidentiality • What information is it important to disclose in this situation? • What will be the impact of disclosing the information for the client, the treating relationship and the family? • How can I act to not prejudice future trusting relationships amongst all players?

25. Good Practice • The issue of confidentiality is discussed with the client at an early stage. This should include what information can be shared. • Issues regarding confidentiality are recorded in the client’s record to allow for continuity of care • The use of advance directives (“Ulysses Agreements) is encouraged. These allow patients to plan when they are well, what they would like to happen in the event of them becoming unwell. • Professionals should help clients to understand the benefits of sharing information with their family support person.

26. When Clients Refuse to Allow Information to be Shared • Explore reasons behind refusal • Is the objection illness-based? (e.g., They’re trying to kill me.) • Talk to them about their concerns, why it is important to share some information • Confidentiality is dynamic –client and family may be in conflict at the time but relationships are not static. Confidentiality issues need to be revisited regularly. • Provide family with resources and referrals that will help support them

27. Afternoon Break

28. Sharing of Information Permittedfor Purposes of Continuity of Care Appendix 13: Releasing of Personal Health Information to Third Parties Fact sheet provides guidelines for releasing client’s information to family and friends under certain circumstances where disclosure is required for continuity of care or for compelling reasons if someone’s health or safety is at risk. Guide to the Mental Health Act, 2005 Edition, Page 119

29. Examples from Fact Sheet An adult with schizophrenia is being discharged from a psychiatric unit. Although she does not have a close relationship with her family, they do take an active role in ensuring her day-to-day needs for food and shelter are met, and they also monitor her health status. The client is suspicious and distrustful of her family members, and asks her clinician not to share any information about her with them.

30. Examples from Fact Sheet Parents have an adult son with a mental illness. The son lives in their basement and will not leave his room. Although the parents provide shelter and care for their son, they are in fear of him, and do not know what to do. The parents contact the hospital where their son has been hospitalized and his mental health worker.

31. Examples from Fact Sheet A father has an adult son with an addiction and a mental illness. The son has attempted suicide and has been committed involuntarily to a psychiatric unit. The psychiatric unit is only able to keep the son committed for a limited time, and wishes to refer the son to a detoxification service. The son refuses to go. The father would like to find out more about his son’s condition to assist his son pursue ongoing therapy and counselling.

32. Case Scenarios Break-out into small groups (5-6) Discuss case scenario Return to larger group Present summary of ideas

33. Wrap-up General thoughts about today’s workshop What could be added to workshop? What else would you like to see in future workshops? Thank you for coming today. Please fill out the feedback form.