Download Involving Relatives in Mental Health Care

Shirley Glynn, Ph.D.
Research Psychologist
Semel Institute, UCLA
CE Workshop Aug 2014 American
Psychological Association
Our Clinical Research Team and Funding
 Dr. Lisa Dixon
 Dr. Amy Drapalski
 Dr. Amy Cohen
 Deborah Medoff
New York
Baltimore
Los Angeles
Baltimore
Funding for Project: VA Health Services Research and
Development (HSR&D) grant (IIR 04-255) to Dr. Dixon
Overview of Presentation
 Recovery movement and family services
 Rationale for family services in mental health care
 Overview of proposed family services continuum
 Evidence base for family interventions in serious psychiatric
illness
 The role of shared decision-making in treatment planning
 Special populations
 Recent onset
 Dual disorder
 Couples
Optimal illness education
So what kinds of disorders are we talking
about?
 Adults
 Many axis I disorders have an evidence-base for family
interventions
 Schizophrenia
 Schizoaffective disorder
 Bipolar illness
 Other psychotic disorders
 Depression with a significant impact on functioning
 May have co-morbid substance use
 Less evidence base for family work with personality
disorders
New SAMHSA Definition
Recovery from Mental Disorders and
Substance Use Disorders: A process of
change through which individuals improve
their health and wellness, live a selfdirected life, and strive to reach their full
potential.
Core Tenets--Recovery
– Emerges from hope
– Is person-driven
– Occurs from many pathways
– Is holistic
– Is supported by peers and allies
– Is supported through relationships and social networks
– Is culturally based and influenced
– Is supported by addressing trauma
– Involves individual, family, and community strengths
and responsibility
– Is based on respect
Family Services have been developing in parallel to
the growth of the Recovery Movement in Mental Health.
Long-term Outcomes in Schizophrenia
Focus on functionality
Potential for remission
Increase ‘stable’ periods
Minimize negative symptoms
1990s
Reduce relapse
Minimize positive symptoms
1980s
‘Survive’ out of hospital
De-institutionalization
Improve self-care
Reduce aggression
Reduce self-injury
Pre1960s
1960-70s
2000+
What are the Implications of the Recovery
Model for Treatment Services?
 First, services and treatments must be consumer and
family centered, geared to give consumers real and
meaningful choices about treatment options and
providers…
 Second, care must focus on increasing consumers’ ability
to successfully cope with life’s challenges, on facilitating
recovery, and on building resilience, not just managing
symptoms
How does family contribute to
recovery ?
 Brekke and Mathiesen (1995) found that, among persons
with schizophrenia not living with their relatives, those
with family contact had better work and overall role
performance. Evert et al (2003) reported a similar positive
association between family contact and social role
functioning.
 Clark (2001) found, among a sample of persons with
severe psychiatric illnesses (over half diagnosed with
schizophrenia) and co-occurring substance use disorders,
those with more family contact and/or financial support
from their families were more likely to reduce or eliminate
their substance use.
How does family contribute to
recovery con’t?
 Prince (2005) that, three months post inpatient discharge,
individuals with schizophrenia whose families were helped to
cope with their illnesses by the treatment team were much
more likely to be satisfied with their mental health treatment.
 Stowkowey et al (2012) found that family participation in a
comprehensive first episode program decreased attrition at 30
month follow-up
Rationale for Family Interventions
in Mental Health Treatment
 Social Relations are an Important Component of
Recovery
 Deinstitutionalization Movement
 Mutual Interplay of Consumer-Relative Stressors
 Reduced Funding for Services
 Distress in Relatives
 Expressed Emotion Research
Expressed Emotion
 Assessed in a semi-structured relative interview (CFI) at
time of consumer exacerbation.
 Scored for presence of critical comments, hostility,
warmth, positive comments, and emotional overinvolvement (content and tone).
 Hi EE-high critical comments; high emotional overinvolvement.
Expressed Emotion cont.
 First identified in England in mid 50’s.
 Found in relatives around the world
 Hi EE predominant in western cultures.
 EE predicts relapse at 9-12 months (across 27 studies)
low EE-22%, high EE-52%
 Likely reflects high stress and limited resources
Family Stress and Relapse
9-Month Relapse Rate
100%
75%
Low EE
High EE
50%
25%
0%
Schizophrenia Studies
(N=27)
From: Butzlaff & Hooley (1998)
Major Affective Disorder
Studies (N=6)
“He’s fine as long as I take my medication.”
“… a mental health provider who will take a minute
to explain why something can’t happen, or is
happening…who will return my phone call and
take me seriously… is a godsend. Helps me be
more helpful in trying to help [my relative].”
Continuum of Family Services
 Consistent with a recovery philosophy, flexibility is a
key principle
 Services must be tailored to veteran’s phase of
illness, symptom level, self-sufficiency, family
constellation, and preferences
Continuum of Family Services
Family
Friendly
Agency
Family
Education
Family
Consultation
Family Psychoeducation/
Family Treatment
Continuum of Family Services
Family friendly Agency
 Daytime and evening meetings
 NAMI/ Celebrate Recovery info routinely provided
 Comfortable meeting place
 Confidentiality issues viewed as a process to promote
collaboration
 Develop a collaborative relationship with relatives
 Assertive Outreach
Continuum of Family Services
Family Education (FE)
 Treatment team provides factual information
necessary to support the veteran and partner
 Offered in many formats, regularly scheduled and
conducted over time including:
 By professionals (e.g., SAFE Program)
 By trained family members (e.g., NAMI Family-to-
Family Education Program)
Continuum of Family Services
Family Consultation (FC)
 Family meets with mental health professional as needed
to resolve specific issues related to the veteran’s
treatment and recovery
 Intervention is brief; typically 1 – 5 sessions for each
consultation
 Provided on as needed or intermittent basis
 If more intensive ongoing effort is required, family can
be referred to Family Psychoeducation
Continuum of Family Services
Family Psychoeducation (FPE)
 Type of evidence-based Family Therapy
 Focuses on developing coping skills for handling
problems posed by mental illness in a member of the
family
 Can be used in single family format (e.g., Behavioral
Family Therapy) or multi-family group (e.g., Multiple
Family Group Therapy)
Two Evidence-based FPE Models
 Multi-family groups (MFGs; McFarlane, 2002) provide
education, support, and group-based problem solving
 Behavioral family therapy (BFT; Mueser & Glynn, 1999)
provides individual assessment, education, communication
skills training, problem-solving training to single families
 Both MFGs and BFT provided by mental health professionals
Anderson et al.
Survival skills workshop and individual
psychoed
Falloon et al.
Mueser & Glynn
Individual Behavioral Family Therapy
Leff & Vaughn
Home Engagement and Clinic Relative
Groups
Mc Farlane
Multiple Family Groups
Tarrier et al.
Individual Structured Family Groups
(behavioral vs. psychoed)
Common Ingredients of Effective
Family Intervention Programs
1.
2.
3.
4.
5.
Educate family about psychiatric illness and their
management.
Show concern, sympathy, and empathy to family members
who are coping with mental illness
Minimize interpretation—not psychodynamic or systemic
Avoid blaming the relatives or pathologizing their efforts to
cope
Foster the development of all family members
Common Ingredients of Effective
Family Intervention Programs con’t
5.
Enhance adherence to medication and decrease substance
abuse and stress
6. Improve communication and problem solving skills in family
members, either formally on informally
7. Provide treatment that is flexible and tailored to the
individual needs of families
9. Encourage family members to develop social supports
outside their family network
10. Instill hope for the future
11. Take a long-term perspective
Characteristics of Effective Family
Intervention Programs [Which May
Vary]
 May be conducted individually or in a group
 Clinic or home-based
 consumer may be present or absent
 Some have a very behavioral emphasis (highly
structured, roleplays); others are more
psychoeducational (more discussion, less structure)
 Length can vary from 9 months to 24 months
Cumulative Relapse Rate
Mean Relapse Rates-18 Studies Comparing
Relapse Rates in Family Intervention to Usual
Care (n=895)1
60%
49%
50%
Family
Intervention
40%
30%
28%
20%
Usual care
10%
0%
Pitchel-Walz G, Leucht S, Bauml J, Kissling W, Engel RR. Schizophr Bull. 2001
Cumulative Relapse Rate
Combined Results of Family Intervention
Programs on 2-year Cumulative Relapse Rates
in Schizophrenia (11 Studies)
70% 64%
Standard Care
(N=179)
60%
50%
Single Family
Treatment (N=207)
40%
30%
20%
10%
0%
28%
28%
26%
Multiple Family
Group Treatment
(N=266)
Single & Multiple
Family Group
Treatment (N=243)
FFT + Medication Delays Relapse More than
Crisis Management + Medication (N = 101)
1.0
0.8
0.6
0.4
CM + Meds
0.2
FFT + Meds
0.0
0
10
20
30
40
50
60
70
Weeks of follow-up
CM vs. FFT 2 (1) = 8.71, p = .003; FFT, mean survival = 73.5 weeks; CM, 53.2 weeks.
Miklowitz DJ, et al. Arch Gen Psychiatry. 2003
80
90 100 110
Behavioral Family Therapy
Major Focus of BFT:
 Develop a basic knowledge of relative’s disorder
 Improve communications skills
 Foster ability to solve problems and achieve goals
Behavioral Family Therapy
 Structured approach to working with families with a
family member diagnosed with a psychiatric disorder
 Accepts the biological basis of specific psychiatric
disorders
 Views the family as having an important influence on
the course and outcome of the disorder.
Behavioral Family Therapy
 consumer & family attend together
 Behavioral
 Weekly
Biweekly
 9 months - 24 months
Monthly
Behavioral Family Therapy Includes
Five Components
 Assessment
(individual session with each participant)
 Education about mental illness and its treatment - 4-6
sessions
 Communication skills training - 3-6 sessions
 Problem-solving skills training - 6-12 sessions
 Work on specific problems
(as needed)
Outline of Sessions Devoted to Each Component
of BFT
BFT Component
 Engagement
 Assessment
Phase of Treatment
 Beginning
 Initially and throughout
 Education
 Early to Middle
 Communication
Skills Training
Number of Sessions
•
•
1-3 sessions
2-4 sessions
 Middle to Late
•
•
 Problem-Solving
Training
 Middle to Late
•
4-12 sessions
 Special Problems
 Late
•
1-5 sessions
1-3 initial sessions with
each individual; follow-up
individual and family
sessions every 3-4 months
4-10 sessions
(if needed)
Format of BFT
 Individual family sessions
 Relatives and consumers included
 “Open door” policy for reluctant participants
 45-50 min sessions
 Sessions conducted on a “declining contact basis”
 Treatment is often time-limited
 Focus is on learning new information and skills, not
fostering insight-behavioral orientation
 Out of session assignments are important
Summary of Evidence Supporting EBP
 Relapse rates in schizophrenia can be reduced by
20% if relatives are included in treatment.
 If programs last six months or more, relapse rates are
reduced by 30% to 50%.
Who Can Benefit from FPE?
 Clients living with or in regular contact with family
members (> 4 hours contact per week)
 Wide range of family relationships (e.g., parents,
siblings, spouses, children)
 Relatives who want to help the client re-integrate into
the community
The Problem
 Overwhelming evidence that family participation in the mental
health care of individuals with mental illness contributes to
improved consumer and family outcomes
 Benefits to even modest level of family involvement with care
 Consistent evidence that such participation does not occur in
majority of cases with US adult consumers;
 There are numerous reasons for this gap; one is failure to
engage consumers and family members in this process
Dissemination is the big problem
 When we consider family interventions for serious
psychiatric illnesses, we have built a Hummer, but
most folks are only interested in a SmartCar.
Why don’t more agencies offer family
based interventions?
 provider concerns
 relative concerns
 consumer concerns
Why don’t more agencies offer family
based interventions?
 Provider Concerns
 Time constraints—case load size
 Theoretical Orientation
 Limited Skills
 Confidentiality Issues
 Reimbursement Concerns
 Hopelessness
 Many consumers are thought to have no family
Why don’t more agencies offer family
based interventions?
 Relative concerns
 No desire for family involvement
 May not understand the value of family interventions
 Logistical impediments (transportation, not traveling at
night)
 Other care-taking constraints
 Illness
 Scheduling
 Stigma
 Health Issues
Why don’t more agencies offer
family based interventions?
 Consumer concerns
 No desire for family involvement
 No interest in family interventions
 Too unstable to make regular appointments
 Health issues
 Do not want to burden family
Not everyone needs intensive family interventions;
some people just need recovery-oriented familybased services. One of the challenges in this field
is intervention matching.
A Model for Shared
Decision Making about
Family Involvement in Care
Continuum of Family Services
Family
Friendly
Agency
Family
Education
Family
Consultation
Family Psychoeducation/
Family Treatment
Recovery Oriented Decisions for Relative’s
Support (REORDER): Engaging the Consumer
 Individualized and person-centered approach
 Promote consumers’ empowerment in decisions
about involving “family” in care
 Facilitating consumer responsibility in engaging their
family support network
 Holistic emphasis: understanding consumer as a
“whole person” embedded in network of
relationships
 Shared decision making (SDM)
 Working to gain consent for involvement
REORDER Intervention Key Components
 Motivational Enhancement: Motivational
interviewing techniques to encourage consumers to
resolve ambivalence about involving their family, and
to enhance the motivation of family members to be
involved through Shared Decision making (SDM).
 Education: Education is provided to the consumer and
family members about psychiatric illness, treatment,
and how the families can become effective
participants in the veterans’ mental health care.
Tailored to their current knowledge level.
 Skills Training: Role play and shaping communication
with family and providers.
Shared Decision Making
 Rejects the previous hierarchical power structures in
mental health with the provider “Knowing all”
 Consumer and Providers working jointly together
 Promote consumers’empowerment in decisions
 Facilitating consumer responsibility
 Decisional Balance Activity (Pro/Con List)
 Values Clarification exercises
Decisional Balance Exercise
Benefits of Family
Involvement
Concerns about Family
Involvement
Worry about me less
Invade my privacy
Less arguing
Mother is sick
Values Clarification Exercise: Part 1
Very
Important
Live
Independently
Moderately
Important
Meeting new
people
Recovering from Have nice
my psychiatric
clothes
problems
Staying out of
the hospital
Little or Not
Important
Have a nice car
Having extra
money
Values Clarification Exercise: Part 2
Important Values I have How Family
Involvement Might Help
or Hurt
Live independently
Recovering from my
psychiatric problems
Staying out of the hospital
Recovery Oriented Decisions for
Relative’s Support (REORDER):Engaging
the Relatives
 Consider family needs and goals
 Consider family preferences for types of involvement
 Concretely ties consumer and family preferences for
involvement in flexible individualized manner
 Integrates elements of peer support
REORDER Structure
 Family Member Provider
 2 Phases
 Phase 1: Consumer; 2-3 45-minute sessions
 Phase 2: Family; 2-3 45 minute sessions (initially
family alone; add consumer)
 Flexible: which support figure; how many supports
attend; if consumer is part of Phase 2; home visits;
how often meet
Inclusion Criteria
 Age 18-75
 Schizophrenia, Psychotic Mood Disorder
 At least two OP mental health consumer in last six months
 Evidence of patient contact with family member or caregiver
over last 6 months
 Currently in an outpatient, community or transitional
residence, short-term (time-limited) or residential
rehabilitation program
 Deemed stable enough to participate by clinicians
Sample Demographic Characteristics
(N=218)
84% Male
36% Caucasian, 59%
African American
Age: 51.6 +/- 9.1 years
Highest grade completed:
13.4 +/- 2.1
20% currently married
45% live with family
66% have children
59% completed some
college
74% receive any disability
benefits
17% have current paying
job
% of Study Participants (N=230)
Consumer Preference for
Family Involvement in Care
100
90
80
70
60
50
40
30
20
10
0
Agree
Disagree/Mixed/Refused
Written Information Attend Support
Group
Treatment Sessions
Call Team
% of Study Participants (N=230)
Consumer Perceptions of Benefits
of Family Involvement
100
Agree
90
Disagree/Mixed/
Refused
80
70
60
50
40
30
20
10
0
Help family with illness
Help family with stress
% of Study Participants (N=230)
Consumer Perceptions of
Barriers to Family Involvement
100
90
80
70
60
50
40
30
20
10
0
Agree
Disagree/Mixed/Refused
Lose Privacy
Fight More
Control Money
Hassle About
Drug Use
Inc fam
responsibilities
% of Participants in REORDER Condition
Attendance at REORDER Consumer
Sessions in Randomized Trial
100
90
80
70
About 80% of all participants had at least
one session. The modal number of
consumer sessions is two.
60
0 Sessions
1 Session
2 Sessions
3 Sessions
50
40
30
20
10
0
Total (N=117) Balt/PP (N=101)
WLA (N=16)
% of Participants in REORDER Condition
Attendance at REORDER Family
Sessions in Randomized Trial
100
90
80
About 50% of all participants had at least
one session. The modal number of relative
sessions is three.
70
60
0 Sessions
1 Session
2 Sessions
3 Sessions
50
40
30
20
10
0
Total (N=117) Balt/PP (N=101)
WLA (N=16)
30
24
25
20
20
16
15
15
13
10
4
5
th
er
O
th
er
O
e
re
la
tiv
bl
in
g
Si
SO
ou
se
/
ep
/S
t
Pa
re
nt
Sp
ld
pa
re
nt
0
C
hi
% of those w/REORDER Family Participation
Relationship to Consumer of Primary
Person Participating in Family Sessions
REORDER RCT Results: Compared to
Enhanced TAU
Consumer Outcomes
 Reduced paranoid ideation (p=.004)
 Improved recovery (MHRM)(p=.025)
Relative to six months before randomization,
significant increase in number of in person visits
between family and “regular “ clinical team
Dixon LB, Glynn SM, Cohen AN, Drapalski AL, Medoff D, Fang LJ, Potts W, Gioia D.
Outcomes of a Brief Program, REORDER, to Promote Consumer Recovery and Family
Involvement in Care.Psychiatr Serv. 2013 Nov 1. doi: 10.1176/appi.ps.201300074.
[Epub ahead of print]
% of Participants
REORDER Results: % of Participants with
Clinician/Family Contact
Dixon LB, Glynn SM, Cohen AN, Drapalski AL, Medoff D, Fang LJ, Potts W, Gioia D.
Outcomes of a Brief Program, REORDER, to Promote Consumer Recovery and Family
Involvement in Care.Psychiatr Serv. 2013 Nov 1. doi: 10.1176/appi.ps.201300074.
[Epub ahead of print]
Benefits of REORDER
 Increased family contact with treatment team
(including REORDER clinician) four fold compared
to ETAU
 Significantly more improvement in recovery
attitudes and paranoid thinking in REORDER
participants
 Did not influence family contact with regular
members of treatment team
Tailoring Family
Work to meet the
Needs of Unique
Populations
Addressing Special Problems
 Co-occurring substance use
 Recent onset SMI
 Couples
Recent Onset SMI
 Still identify with peers
 Confused—both consumer and family need
education
 Relatives may not immediately resonate to tx
recommendations
 Important to give a message of hope and not
anticipate or expect long term impairment—we do
not know the trajectories (new meds, new
treatments, new attitudes)
 Engagement in tx is a process
Co-occurring Substance Use
 Consider harm reduction philosophy (inform family)
 Can target reducing/eliminating use with
communication skills and problems solving if that is
participant goal
 Focus on improving functioning (and experiencing
natural consequences of use) if reducing/eliminating
use is not a goal
 Can encourage family to use communication skills to
give feedback on use
 Can teach the family contingency contracting
Conjugal Like Relationships
 BFT assumes some good will towards consumer in room
 BFT is not a first line treatment when the primary problem is
marital distress not apparently associated with the psychiatric
illness
 Not the recommended treatment when couple is considering
separation or divorce unless they agree to work together on
skills for a minimum amount of time (6 months??)
 Consider including activities to shore up positive feelings—
caring days, shared reminiscing
 Can change order of skills presentation to meet need (e.g.
communication skills earlier)
Tips on Providing Optimal Illness
Education
Principles of Illness Education
 Education is interactive
 Use multiple teaching aids
 Connote consumer as the “expert”, not you
 Elicit relatives’ experience and understanding
 Avoid conflict and confrontation
 Education is a long-term process
 Evaluate understanding often
 Review materials as often as possible
 Listen more than you talk
Typical Content of Educational Sessions
 Psychiatric Diagnosis (Schizophrenia, Schizoaffective






Disorder, Bipolar Disorder)
Medication (Understanding Antipsychotic Medications,
Understanding Antidepressant Medications, or
Understanding Mood Stabilizing Medications)
The Stress-Vulnerability Model of Psychiatric Disorders
Developing a relapse prevention plan
Role of the Family
Collaborating with the treatment team
Can add info on substance use, infectious disease, etc.
Decrease blame/guilt/stigma Increase
knowledge for informed decision making
PSYCHOBIOLOGICAL
VULNERABILITY
Etiology
PROTECTIVE
FACTORS
RISK
FACTORS
POOR
SOCIOENVIRONMENTAL
STRESSORS
MODERATE
OUTCOMES
GOOD
What is SCHIZOPHRENIA?
 Typical symptoms of schizophrenia include hallucinations,
delusions and thought disorder.
 People suffering form schizophrenia are not usually violent.
 People can improve and have good lives.
 Negative symptoms and cognitive impairments are very
common in schizophrenia.
 It is likely that both biological and environmental factors
combine to influence illness onset.
 Schizophrenia may be brought on or made worse by stress.
 Families do not cause schizophrenia.
 Medications reduce symptomatology.
Relapse Prevention Worksheet
____________________ has a risk of reexperiencing symptoms
of _________________ (specify disorder)
The earliest OBSERVABLE signs that symptoms are flaring up are:
______________________________________________________
The circumstances that tend to make symptoms worse include:
______________________________________________________
Plan to be implemented when warning signs flare up:
______________________________________________________
Doctor's Name: ____________________ Phone: ______________
Therapist or Case Manager's Name: _____________ Phone: _____
Conclusions/Thoughts
 Families play a critical role in recovery from
serious psychiatric illnesses
 Families often bear their own burdens
 Engagement activities must include the
consumers’ network in a manner that honors
consumers’ preferences
 Engagement often requires skill building—how
do I use this service effectively for me?
 Engagement activities must respect the choice to
terminate involvement