Ottawa Network for Borderline Personality Disorder (ON-BPD)

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Ottawa Network for Borderline Personality Disorder (ON-BPD) H E L P I N G FA M I L I E S A N D F R I E N D S CO P E W H E N S O M E O N E T H E Y LOV E H A S B P D ON-BPD Presentation to the Royal Mental Health Center Support Groups March 20, 2018

Background of ON-BPD Objectives Family Connections course Continuing Connections Website Newsletter Future Opportunities Summary Outline 2

Background 3 2004 4 Ottawans attended Family Connections training course taught by Dr. Perry Hoffman & Dr. Alan Fruzzetti (founders of National Education Alliance for BPD) www.borderlinepersonalitydisorder.com 2004, Fall First 12-week Family Connections course given in Ottawa Has continued 2 or 3 times each year, beginning in January and September 2005 Ottawa Network for Borderline Personality Disorder established as a Registered Charity in Canada Registration no.: 829239474RR0001

Impact More than 350 individuals have completed the Family Connections course 30+ courses have been delivered 25 trained course facilitators (family members) in Ottawa First Family Connections course in French presented in April-June 2016 in Ottawa, based on translation of the course manual into French funded by Heritage Canada and the Ontario Trillium Foundation Approximately 75 families receiving training per year 4

February 2018 More than 350 individuals have completed the Family Connections course 30+ courses have been delivered 25 trained course facilitators (family members) in Ottawa Virtual satellite training from NEA-BPD First Family Connections course in French presented in April-June 2016 Family Connections Course Leader Refresher training June 2017 5 Family Connection course in Cornwall Feb 2018

Objectives of ON-BPD To educate the public regarding BPD through: Courses and facilitated group discussions; Presentations at seminars and conferences; Community outreach meetings; Collection, publication and dissemination of related educational articles and information; and, Education and creation of peer support opportunities for families of individuals affected by BPD 6

Family Connections Course 7 T H E M A I N WAY W E H E L P FA M I L I E S I N T H E OT TAWA A R E A

Family Connections 8 Course Goals: 1. To help understand the symptoms and behaviours associated with BPD and its related features 2. To better understand how to manage our own emotional responses to situations and our relationships 3. To develop a support network of family members with others with similar situations

Family Connections 9 12-week course given by volunteers, who have a loved-one with BPD, trained by NEA-BPD No charge all expenses covered by donations More than 30 courses have been given More than 350 family members have taken the course Self-referrals and referrals from professionals Forum for family members to share experiences, reducing stigma, isolation, and sense of burden

Impact of Family Connection Evidence-Based* 8 Caregiver Burden Caregiver Stress Effect size=.96 Effect size=1.09 Statistically significant reductions reported by people who have completed the Family Connections program. * Data from presentation at the ISSPD conference, Montreal, Quebec, October 2015. Tali Boritz, Ryan Barnhart, Joanna Henderson and Shelley McMain (University of Toronto (Psychiatry), and CAMH)

Family Connections Course Content Introduction and Participant Story Sharing Family Education Relationship Mindfulness Skills Family Environment Skills Validation Skills Problem Management Skills 11 + Exercises/homework through the course to help learn and practice the skills

Based on DBT Skills Dialectical Behavioral Therapy, a recognized program for treatment of BPD. Skills include: Radical acceptance Opposite action Relationship mindfulness Emotion management Creating a validating environment Observing your limits Finding a balance 12

Family Connections Course Increasing demand for: Family Connections course Volunteers to lead it Ongoing peer support Feedback from participants is very positive Forum for sharing experiences Understanding the disorder Impact/benefits on family member sense of well being 13

Family Connections Course 14 Evaluations on completion of each course Unequivocally positive feedback Comment by participant my husband and I are finding the group extremely helpful. The exercises force us to face aspects of our relationship with our son that are difficult, but we know in the long run, will be beneficial to us. I feel more peaceful than I have in a very long time, just knowing that someone else out there understands what we are dealing with is very helpful.

Family Connections Course 15 Comment by another participant The Family Connections course gave us the skill to understand our daughter s illness. With that knowledge, came understanding and compassion. Without the opportunity to attend this course, we are sure that our daughter s life would have been much more chaotic and destructive. At the same time, our family relationship may have fragmented in the ensuing despair. However, now we are empowered to manage the effects of BPD with strategy, knowledge, and patience.

Continuing Connections 16 O N G O I N G S U P P O R T FO R G R A D UAT E S O F T H E FA M I LY CO N N E C T I O N S P R O G R A M

Overview and Objectives ON-BPD conducted a survey of its participants in October 2015 54% (21/39) of respondents reported a desire for a ongoing peer support / networking events. 17 In January 2016, the ON-BPD approved the launch of a pilot session of Continuing Connections which promotes: connecting with others (ongoing peer support to caregivers) refresh skills (taught in the Family Connections program, and introducing new resources) sharing experiences (via facilitated discussion)

Continuing Connections Core Elements open to all graduates of the ON-BPD FC course offered 3-4 times per year in a half day workshop format (2 ½ hour) facilitated by volunteers, at least one of whom is a trained FC leader 18 all materials made available online via the ON-BPD members portal Continuous improvement post event survey to all those who registered 2018-19 Development of Standardized CC program

Continuing Connections Sessions To date, 7 sessions have been held: DATE TOPIC # PARTICIPANTS % SATISFACTION May 14, 2016 (pilot) Validation 33 86% September 24, 2016 Radical Acceptance 22 67% 19 December 3, 2016 Relationship Mindfulness 15 100% March 25, 2017 Communications 10 100% June 10, 2017 Family Education 6 60% November 4, 2017 Problem Management 21 100% February 24,2018 Validation 23 90% May 26, 2018 October 20, 2018 Radical Acceptance Relationship Mindfulness

Participant Feedback General Comments 20 Thank you for delivering these workshops. I value the refreshers and opportunities to meet other parents who are surviving, living with a loved one who has BPD. I think annual sessions of this sort would be very helpful and appreciated Thank you for the great session the coordinators were absolutely wonderful and compassionate and I appreciated and hung on to every word they said.

Participant Feedback What did you like most? 21 reminder of the theory and hearing the stories of other families The feeling of being with people with similar difficult experiences Review of skills and the sharing people, did so I felt less isolated. What did you like least? Our former classmates did not attend and I missed the connection that I felt in the longer class. However the new people that we met were very open and friendly.

Other Activities 22 O T H E R WAY S W E P R OV I D E S U P P O R T

Website Responsively bilingual (French and English) Translation funded by Heritage Canada and the Ontario Trillium Foundation Includes secure area for access to Family Connections and Continuing Connections materials Average about 500 sessions per month More than 250 registered users 23

Approximately once per month (except summer) Content includes ON-BPD updates as well as news and resources from our partners High engagement: click rate of 66% after opening the newsletter email is much higher than the industry (non-profit) average Newsletter 24

Future Opportunities 25 I N C R E A S E D S U P P O R T TO FA M I L I E S

Opportunities Tele-connections Family Connections course Lecture Series for Community Outreach Website Upgrades Social Media Outreach Translation of More Documents to French Continuing Connections Development Collaborations Other Opportunities? 26

Summary 27 H E L P I N G FA M I L I E S A N D F R I E N D S CO P E W H E N S O M E O N E T H E Y LOV E H A S B P D

Summary 28 At this time, ON-BPD supports families in Ottawa by: Family Connections course Continuing Connections Website Newsletter Future Opportunities are being considered and prioritized