Innovative Model for Self-Help Family Support -Preliminary Clinical and Research Evidence-

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1 Innovative Model for Self-Help Family Support -Preliminary Clinical and Research Evidence- Aaron Keshen, Cheryl Aubie, Brad Holley Central Zone Eating Disorder Program

2 Outline Introduction Theoretical basis of the self-help DVD Clips from the DVD Using the DVD to augment treatment in a specialty eating disorder program preliminary pilot data Using the DVD in a carers workshop around the province qualitative feedback Directions for the future- Addition of Emotion Focused Family Therapy

3 Introduction Why is engaging families important? Schizophrenia 20% reduction in relapses if families are involved Bipolar disorder Less re-hospitalizations and relapses with addition of family-focused therapy Substance use Family therapy improved psychiatric symptoms and functioning in those with SUD.

4 Introduction Cognitive Interpersonal Model of Eating Disorders

5 Introduction Limitations of traditional family therapy models in the real world : Time consuming multiple sessions spread over many months Intensive and complex cumbersome manuals/workbooks, handouts, DVDs Trained facilitators challenging to train facilitators especially problematic when attempting to provide service to families in rural areas

6 Introduction As a result of these limitations: Many families do not get access to potentially helpful interventions Those who have access may not complete the intervention Even in controlled research setting for up to 20-40% of participants to not complete or partially complete the interventions

7 Introduction In order to rectify these limitations one researcher suggested: recruitment and retention of families [in a family therapy study has been] problematic, suggesting the need for even briefer, more targeted intervention aimed at engaging and motivating families to participate in treatment.

8 Introduction A self-help DVD for carers of those with eating disorders was created in England based on the Expert Carers Helping Others ECHO model (2013). 2.5 hour, well produced, concise and incorporating best practice family based therapy and motivational interviewing skills from 30 years of research 17 vignettes illustrating actors portraying both unhelpful and helpful skills for communicating with someone with an eating disorder

9 Animal Metaphors for Caring Divided into: 3 types of Emotional Responses 3 types of Caring Styles Helpful way to open conversation with loved ones about styles From the work of Dr. Janet Treasure & The New Maudsley Method

10 Types of Emotional Responses Jellyfish Struggles to keep emotions in check. Openly distressed & a little wobbly.

11 Types of Emotional Responses Ostrich Avoiding seeing, thinking and dealing with emotions

12 The Correct Balance of Emotion Too Much Warmth & Too Little Emotion Calmness Emotion Support, interest & affirmation increases confidence in change

13 Types of Caregiving Kangaroo Overprotective; desire to protect loved one from the challenges of life and emotions by putting them in the pouch

14 Types of Caregiving Rhinoceros Controlling, constantly giving advice and arguments for change (may lead to defiance and butting heads)

15 Balance of warmth & direction Too much Just enough Too much control & direction sympathy & direction Gentle guidance keeping person safe & secure management

16 Animal Models Overview Encourage parents to aspire to be a St. Bernard & Dolphin to increase effectiveness in the promotion of recovery Continuing to engage in the other patterns of caregiving & responding inadvertently leads to maintenance of symptoms

17 Motivational Interviewing Skills DVD teaches some basic MI skills to help carers deal with difficult situations Express Empathy Clients are more open with carer is empathic Support Self-Efficacy Carers who believe their loved ones can change are more effective at helping facilitate change

18 Motivational Interviewing Skills Roll with Resistance Resistance is not challenged and tends to be decreased rather than increased, as clients are not reinforced for becoming argumentative Develop Discrepancy When clients perceive that their current behaviors are not leading toward some important future goal, they become more motivated to make important life changes

20 DVD Pilot Study REB Approved Dalhousie Department of Psychiatry Research Fund In collaboration with Janet Treasure from Kings College in London. Early pioneer of FBT for eating disorders in 1980s Modified family treatment for eating disorders over several decades Part of the team that developed the DVD

21 DVD Pilot Study Purpose Aim of this RCT pilot study was to collect data assessing the use of the self-help DVD in a specialty clinic setting. Comparison of treatment as usual (TAU) in our clinic versus TAU plus the DVD

22 DVD Pilot Study Setting NSHA Central Zone Adult Eating Disorder Program: Group based program for AN, BN and UED 4 days/week, up to 8 months CBT, ACT, EFT, DBT and meal support groups Core group is a CBT informed review of food records and goal setting for behavior change TAU can include impromptu family meetings if requested, or suggested by staff (no formal family therapy)

23 DVD Pilot Study Inclusion Criteria: Patients with an ED (AN, BN, UED) Patients age of >17y.o. Carers can include parents/partners/siblings/extended family who provide unpaid help and support. Peers and roommates could also be included in circumstances within which they play a significant role in the person s life and meet criteria. Exclusion Criteria: ED comorbid with severe psychiatric or physical comorbidity (treatment interfering) Family in a concurrent treatment trial Either patient or carer has insufficient knowledge of English.

24 DVD Pilot Study Primary hypothesis Carers receiving DVD intervention will report lower distress levels compared to carers receiving treatment as usual (TAU), at post-intervention and 3-month follow up. Secondary hypotheses Carers (and patients of those carers) receiving the DVD intervention will report improvements in carer related factors that have been found to mediate eating disorder severity at post-intervention and at 3-month follow-up compared to carers in TAU. expressed emotion accommodating/enabling behaviours carer self-efficacy and eating disorder impact Patients whose carers receive the DVD will report lower levels of eating disorder symptomatology at post-intervention, and the changes will be maintained at 3-month follow up.

25 DVD Pilot Study Procedure Randomize patients (and carers) into TAU+DVD group or TAU. Group assignment blind to clinicians. Carers in DVD group asked to watch DVD over 4week period. Research assistant would carers once/week to ask if DVD watched and to provide non-clinical technical support. Outcome measures given to patients and carers pre-dvd, post DVD (4weeks), and 3-month follow-up. Sample Size Planned to recruit subjects per arm over 3 years. Likely going to fall short of recruitment goal, but per arm has been cited as adequate to determine effect size for larger studies, so revised goal to 15 per arm.

26 DVD Pilot Study Preliminary results Interim analysis shows some possible effects, but with caveat that not a full analysis, consideration of limitations of data and incomplete data set. Carers DVD group N=9, N=7 (at 3mo F/U) TAU group N=15, N=9 (at 3mo F/U) Patients DVD group N=10, N=7 (at 3mo F/U) TAU group N=11, N=6 (at 3mo F/U)

27 Eating Disorder Impact Scale Carer Scale p = 0.07 ES=1.21 DVD TAU 10 Pre 3mo F/U

28 Accommodation/Enabling Scale Carer Scale p < 0.05 ES=1.38 DVD TAU Pre 3mo F/U

29 Expressed Emotion Patient Scale DVD TAU Pre 3mo F/U

30 Patient/Carer Collaboration Scale Patient Scale p = 0.1 DVD TAU 160 Pre 3mo F/U

31 Carer s Workshop Pilot project Mental Health Foundation of Nova Scotia funding (2014) Day-long workshop for families (carers) Three clinical sites within our Nova Scotia Eating Disorder Treatment Network (NSEDTN) Co-facilitated by local MH clinician and a clinical rep. from NSHA Central Zone EDO program

32 Carer s Workshop Inclusion: Had to have a loved one with an eating disorder Participants must be 18 years+ Participants could not presently have an EDO

33 Carer s Workshop Recruitment: Local MH rep. contacted existing clients/families Advertising in waiting rooms Word of mouth

34 Carer s Workshop Objectives: Carer education and support Outreach support to clinical sites Provisions of a permanent clinical resource for family support (workshop materials and DVD) Provide an opportunity to create networks of skilled carers who can support one another

35 Carer s Workshop Workshop content: Illness specific information (myths and facts) Motivation to change Care giving skills Animal metaphors DVD scenarios (what to do; what not to do) Facilitated discussions Workshop evaluation

36 Workshop content Myths: Parents are the cause of their child s EDO People with EDO are trying to punish their parents or other loved ones EDO are a choice a lifestyle People with EDO are just trying to get attention EDOs are all about food, recovery is just a matter of eating

37 Transtheoretical Model

38 Care giving skills Meriden Family Education and Support Programme Reflective listening Rolling with resistance Developing discrepancy Open-ended questions Supporting self efficacy Expressing empathy

39 Content: DVD scenarios: Selected scenarios View scenario Facilitated discussion Review caring skills

40 Evaluation 22 participants across three sites 17 completed the evaluation 5-point Likert scale Many stated that their knowledge of EDO improved Others commented how useful it was to meet other families who were struggling with similar issues

Evaluation 5.0 4.5 4.0 3.5 3.0 2.5 2.0 1.5 1.0 0.5 0.

eating disorder How helfpul was the workshop for your own confidence in being able to cope with caring for someone with an eating

41 Evaluation This workshop improved my knowledge of eating disorders This workshop improved my knowledge of how to care for someone who has an eating disorder How helfpul was the workshop for your own confidence in being able to cope with caring for someone with an eating disorder? how helfpul was the worksho pfor your own confidence and ability in managing Eating Disorder behaviours? How helpful was the workshop in managing your own level of stress concerning the eating disorer and your role as a carer?

42 Directions for the Future Incorporating ECHO and Emotion Focused Family Therapy (EFFT) May be helpful to incorporate with ECHO when more significant emotional dysregulation in carer and/or patient

43 Emotion Focused Family Therapy Based on the notion that: There is extraordinary healing power within families Caregivers can learn all the skills they need to become their loved one s recovery coach in only a few sessions Caregivers can overcome their fears that keep them stuck in unhelpful patterns of relating to their loved one Caregivers need coaching and support and for their clinicians to believe in them until they believe in themselves

44 Caregivers are asked to: Become their loved ones recovery coach (via symptom interruption) Become their loved ones emotion coach (via emotion processing) Support their loved one to heal old wounds (via relationship repair) Work through their own fears or emotional blocks that interfere with the above

45 Recovery Coaching Caregivers are taught to create & implement behaviour strategies to interrupt loved one s symptoms Caregivers efforts have been demonstrated to have more powerful and longer lasting effect than clinicians interventions Caregivers are coached by clinicians when they encounter difficulites

46 Emotion Coaching Caregivers take on the role of emotion coach to support the processing on emotion and facilitate symptom interruption Basics of emotion coaching are taught and caregivers are supported through challenges they encounter

47 Rationale for Emotion Coaching Loved ones will: feel understood and supported learn that emotional challenges are part of life and they can be dealt with eventually internalize the ability to regulate and problem-solve instead of using symptoms and unhealthy relationships to cope Family relationships will improve!

48 Emotion Coaching 1. Emotion education provided about why we have emotions and how they help us 2. Steps of Emotion Coaching Attend to the emotion Label the emotion Validate the emotion Meet the emotional need (soothe, protect, reassure, assert, self limits) 3. Healing old wounds via relationship repair

49 Healing Emotional Wounds Relationship Repair is a crucial part of healing families when A child blames themselves for their MH issues A child blames parent (or someone else) for their MH issues A parent blames themselves for their child s MH issues A parent is frustrated with their child for having MH issues

50 Helping Caregivers Heal One of the most critical components of EFFT is helping caregivers work through their own emotional obstacles that surface while helping loved one Emotional issues can get in the way of effective caring Healing caregivers own blocks changes the way they feel and care for their loved one

52 Emotion Focused Therapy We work to process and overcome avoidance as a means of coping with overwhelming affect We guide them to develop self-efficacy through mastery of their internal/emotional experiences Process, express, transform emotions and recognize agency in the construction of their own experience

53 How does emotion processing Chair work happen? Main Tasks to work with/resolve for parents Self-critical dialogue or inner critic that limits parents from being the best possible support for their child Self-interruption (blocking emotion); not allowing certain emotions to be expressed in the family

Empowering Families Skills for Carers Workshops. Susan Ringwood Chief Executive Beat

Empowering Families Skills for Carers Workshops Susan Ringwood Chief Executive Beat Empowering Families Overview of presentation Beat The New Maudsley Method Parenting styles- the animal metaphors Communication