Using Virtual Space to Provide Group Support and Education for

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Using Virtual Space to Provide Group Support and
Education for Families Affected by Concurrent
Disorders
Caroline OGrady Wayne Skinner Sandra Cushing
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Goals

• Background Partnering with Families Affected by
  Concurrent Disorders
• Overview of Online CD Family Support/Education
  Group Project
• Preliminary Qualitative Findings
• Discussion

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An interconnected process
Practice
Research
Knowledge Mobilization
Skinner OGrady, 2009
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How could we involve families?

• Welcome
• Include
• Involve
• Information
• Psychoeducation
• Social Peer Support
• Consultation
• Counseling
• Therapy

Skinner OGrady 2007
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An interconnected process
Practice
Research
Knowledge Mobilization
Skinner OGrady, 2009
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Procedures

• How we set up the study

Manual Only N18 Family Support Group N20
CAMH, Toronto Elmgrove, Brockville CAMH, Toronto Elmgrove, Brockville
Skinner OGrady 2007
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What did we find?

• Results for
• (a) family CD support / educational group and
• (b) manual-only intervention
• showed significant improvements
• from baseline assessment
• to completion of the intervention

OGrady Skinner 2006
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Results continued

• Although results from manual-only intervention
  did not show as much improvement across the
  variables studied, there were no significant
  differences between interventions.
• Cannot conclude that one was superior to the
  other.
• Both interventions produced positive effects for
  participants

OGrady Skinner 2006
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Journey As Destination
Journey Into Illness Journey Through
Illness Journeying On Preoccupati
on Renewal
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An interconnected process
Practice
Research
Knowledge Mobilization
Skinner OGrady, 2009
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Resource Development

• A Family Guide to Concurrent Disorders
• Companion Facilitators Guide

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Contents

• 1. Introduction to Concurrent Disorders
• Concurrent disorders terminology and definitions
• Concurrent substance use and mental health
  problems
• An Introduction to treatment
• 2. Substance use problems
• The biopsychosocial approach
• Why do people develop substance use problems?
• Substance use disorders
• Types of substances
• 3. Mental health problems
• Why do people develop mental health problems?
• Mental health disorders
• Co-occurring substance use and mental health
  problems

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Contents (continued)

• 4. The Impact of Concurrent Disorders on Family
  Members
• Concurrent disorders and family life
• Behaviour problems
• Preoccupation effect
• The positive aspects of caregiving
• 5. Family Members and the Importance of Self-care
• Practicing self-care
• Long-term self-care goals
• Building a self-care plan of action
• 6. Treatment Issues and Approaches
• Traditional approaches to treating concurrent
  mental health and substance use problems
• Integrated treatment
• Motivational approaches to treatment
• What does treatment involve?
• Navigating the treatment system

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Contents (continued)

• 7. Medication
• Drug therapy and mental health problems
• Medication management
• Drug therapy and substance use problems
• Drug interactions
• 8. Crisis Management
• Being ready for a crisis
• Treatment in a crisis
• Developing an emergency action plan
• Issues for families
• 9. Stigma
• Experiencing stigma
• Understanding stigma
• Suffering stigma
• Combating stigma
• Burnout

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Contents (continued)

• 10. Relapse Prevention
• What is a relapse?
• Relapse prevention substance use
• Relapse prevention mental health
• 11. Recovery
• The role of hope in recovery
• Establishing and sustaining recovery
• Family members role in recovery
• 12. Resources

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Facilitators Guide
I Overview II Evidence base The case for
working with families The case for
psychoeducation The case for family education and
support programs Supporting Families Affected by
Concurrent Disorders III Working with
families IV Preparation Getting organizational
support for family programs Choosing a delivery
method Adapting the program Structure Recruitment
Follow-up continued
OGrady Skinner 2007
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Facilitators Guide (continued)
V Implementation Checklists and guidelines Role
of facilitators Challenges V1 Evaluation Tools
for measuring impact Qualitative measures VII
Session outlines Session goals Content
outline Activities Facilitators
notes Glossary References Resources
OGrady Skinner 2007
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An integrative process
Practice
Research
Knowledge Mobilization
Skinner OGrady, 2009
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And now further adventures in supporting
families affected by concurrent disorders
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Online Family Concurrent Disorders Support /
Education

• Prevalence rates of co-occurring mental health
  and addiction problems (concurrent disorders or
  CDs) is very high.
• Family members play a crucial role in the care
  and support of persons with CDs.
• There are few empirically evaluated interventions
  for these caregivers and other family members

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Online Family Concurrent Disorders Support /
Education

• Our recent feasibility 3-phase research study
  (OGrady Skinner) was first in Canada to
  compare two types of support / educational
  interventions for families affected by CDs.
• Dearth of family-related research is concerning
  considering high co-prevalence rates of these
  problems and frequency / degree of contact of
  sufferers and their families.

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Families and Concurrent Disorders

• Families frequent, often constant interaction
  with their ill loved ones
• Also provide physical, emotional and financial
  support, serve as case managers and advocates and
  directly deal with their relatives symptoms of
  mental illness and substance abuse
• Work tirelessly to find appropriate treatment /
  ensure follow-up of treatment plans (e.g.
  medication, attendance at doctors appointments,
  treatment programs etc.)

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How are family members affected by concurrent
disorders?

• They love and worry about their ill loved ones -
  go to great lengths to help and support them,
  often to the detriment of their own emotional,
  physical, mental health.
• Family members are determined, tenacious and
  demonstrate incredible resilience in the face of
  extreme hardship.
• They are an absolutely essential part of our
  health care system.

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Concurrent Disorders and Complexity

• Concurrent disorders lead to major complex
  problems for example, difficulties with
  community living, relapse and readmission to
  mental health units and addiction treatment
  centers, involvement with criminal justice system
  and in a whole range of problems that compromise
  the quality of life for sufferers

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Concurrent Disorders as Lived Experience

• More likely to need help for physical health care
  problems often more precarious prognoses less
  likely to remain in treatment or achieve positive
  outcomes
• Experience Acute distress (for example,
  psychiatric and psychosocial crises such as
  suicide attempts, self harm, interpersonal
  conflict, drug overdoses) and

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Chronic distress

• Persistent neg. and / or pos. psychiatric
  symptoms
• Chronic drug and alcohol abuse and relapses
• Failed interpersonal relationships / loss if
  social support
• Failed attempts at work and school
• Poor financial management

• Homelessness
• compromised nutritional status
• self-care deficits
• emotional dysregulation
• low levels of motivation and demoralization
• higher mortality rates.

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Families and Concurrent Disorders

• The impact of CDs is also felt by the people
  whose lives are affected by the suffering person.
• Reports indicate that at least 40 of persons
  with mental illness live with their families,
  while 75 have frequent (often daily) contact
  with their families
• Considering the high co-occurrence of mental
  illness with drug / alcohol problems (between 25
  and 75), families are often trying to cope with
  concurrent disorders (Sciacca, 1995)

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Families and Concurrent Disorders

• Previous studies of educational and supportive
  interventions for families affected by mental
  illness OR addiction have demonstrated
  improvements in information acquisition,
  empowerment, social support, coping and caregiver
  burden
• Interventions have ranged from low-intensity
  (books / pamphlets / brief educational sessions)
  to more intensive facilitator-led, peer support
  group interventions, to very intensive family
  therapy groups (Dixon, 1995 2001 Silver, 1999,
  Health Canada, 2002)

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Families and Concurrent Disorders

• Family interventions have ranged from short-term
  (lt 9 months) to long-term (gt 9 mos up to 2 years)
• Some single-family groups and others multiple
  family groups may or may not have included the
  consumer in these family groups.
• Research has shown that family outcomes as well
  as consumer outcomes improve when family members
  needs for support and education are met

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Internet Interventions in Health Care

• Exponential increase in home computers and
  internet access has expanded potential for online
  health-related support, education, information
• What are the benefits of these interventions? Why
  might people turn to Internet-based
  interventions? Ideas??

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Internet Interventions in Health Care

• Internet-based interventions are cost-effective
  and facilitate provision of health care
  information and support
• Provide increased accessibility - overcome
  economic, distance transportation / time
  scheduling difficulties
• Other advantages personal preference (discomfort
  / embarrassment)

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Internet Interventions in Health Care

• Work-related commitments, caregiver demands,
  personal health-related issues / other
  restrictions that prevent people from accessing
  and gaining benefit from face-to-face
  interventions.
• Internet is constantly available for a large
  majority and is easily accessible from
  geographically diverse areas
• (Kirsch et al., 2004 Ritterband et al., 2003)

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Internet Interventions in Health Care

• Approx. 80 of all Canadian households have a
  personal computer (PC) 32 have two or more PCs.
• Internet use more than doubled between 1998 and
  2004
• Early research has shown that self-help and
  facilitator-led educational groups within
  supportive environments are useful for
  individuals and families affected by a whole
  variety of chronic illnesses.

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Internet Interventions in Health Care

• Between 2001 and 2003, gt 60 million Americans
  sought health-related information on the Internet
  and 4 million indicated that web-based
  information increased their ability to cope with
  serious illness (SRG, 2006)

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Internet Interventions in Health Care

• Important to demonstrate the efficacy and
  effectiveness of online support / educational
  interventions - in comparison to (a) current gold
  standard face-to-face interventions for which
  efficacy has already been demonstrated (b) in
  basic information and educational interventions.
• Despite gt 10 years of consumer and family
  participation in online support groups, few
  studies have assessed their type value OR the
  interface between internet resources and
  face-to-face care.

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Evaluating Internet Interventions in Health Care

• The internet is also an effective means of
  facilitating the collection, coordination,
  dissemination and interpretation of data
• Family Concurrent Disorders Online support /
  educational Pilot research Study
• Conceptual framework for mixed method design to
  evaluate processes and outcomes of this pilot
  study in integrated, organized manner.
• Development and set-up of Family CD website
• Contract with Evolutions Health (VC-C Inc.)

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Online Family Concurrent Disorders Pilot Research
Study - Methods

• CAMH Review Ethics Board / Consent Form
• Study funded by CAMH Addictions Program
• Recruitment
• Canada addictions and mental health agencies
  across Ontario and other provinces (email
  messages sent to agencies and to organizations
  such as SSO, MDAO / C) paper advertisements
  CAMH and beyond
• United States email messages with study ad
  attached and full explanation of study
• Sent to NAMI, Al-anon

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Online Family Concurrent Disorders Pilot Research
Study - Methods

• Closed, confidential, anonymous research support
  group (anonymous yahoo email addresses and alias
  names used)
• Professional support group facilitators (APNs /
  Cs from CAMH)
• Asynchronous group facilitation process
  facilitated in manner similar to face-to-face
  groups - followed chapters from A Family Guide
  to Concurrent Disorders (covered one chapter
  /forum per week)
• BUT 24 / 7 accessibility!

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Data Collection

• Quantitative (outcome measures)
• Before and after study hard copy questionnaire
  packages sent (via mail) to American participants
  and to Canadian participants living outside GTA.
• Sending out Group 2 post intervention
  questionnaire package this week
• Local participants came in person to CAMH
• Honorariums hard copy of book for participants

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Quantitative Research

• Primary Outcome Variables
• Social Support (2 measures used)
• Information Education (2 measures used (Mastery
  Self-efficacy) and evaluated separately
  subsequently added to equal Total Empowerment
  score
• Secondary Outcome Variables
• Coping, Caregiver Burden, Hopefulness, Perceived
  Stigma, Satisfaction with Life

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Quantitative Research

• Demographic data
• Tests for equivalence between groups
• Group One (May August, 2009) n 11
• Group Two (August November, 2009) n 11
• Combined sample size n 22
• Dependent Samples T-tests (pre / post
  quantitative data)
• Results Coming Attraction!!

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Qualitative Research

• All qualitative research completed online
• Family CD website participant confidential
  access to Personal Diary (password-protected)
  sent once weekly to P.I. of study
• All participants posted comments on Main
  Discussion Board (permission to use as anonymous
  qualitative data)
• Group One Method Constructivist Grounded Theory
• Group Two Method Grounded Theory
• Results Coming Attraction!!

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Participant Comments

• Let's talk about my recovery.  It means being in
  a calm environment, having and enjoying outside
  activities, reading, working without being nagged
  about it, meeting new people and enjoying time
  spent with good friends, finally, recovery means
  sharing moments with each other.  I'd love to
  have a meal with my girlfriend, to go away
  somewhere, enjoy a movie
• (Canadian group 1 participant spouse of
  individual with depression / anxiety / alcohol
  dependence). 

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• WOW! I have learned a lot during this study.  My
  husband has too   he understands a great deal of
  what I have shared with him.  I believe this
  study has benefited both of us.  He was really
  excited for me, when I told him I would be
  participating in an on-line study.  The time has
  flown by and I will miss the support all of you
  have so freely given to me
• (American online group 2 - spouse of individual
  with alcohol dependence and depression / anxiety)

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After reading everyone's posting on recovery, I
am so inspired.  Just knowing what everyone is
going through and continuing to go through is
certainly not easy and I can't help but admire
everyone's strength and courage. This whole
on-line Family Guide to Concurrent Disorders has
help me so much, first to understand that we are
not alone in our struggles, second having
knowledge about the disorders has helped
me understand that goals are achievable and
third, having faith, hope and love has helped me
to see and believe that recovery is certainly
possible (Canadian Group 1 participant parent
of individual with BPD / addiction) 
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• Our experiences facilitating the family
  concurrent disorders support / educational groups