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Using Virtual Space to Provide Group Support

and Education for Families Affected by Concurrent Disorders

Caroline O’GradyWayne SkinnerSandra 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

KnowledgeMobilization

Skinner & O’Grady, 2009

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How could we involve families?

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

Skinner & O’Grady 2007

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An interconnected process

Practice

Research

KnowledgeMobilization

Skinner & O’Grady, 2009

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Procedures

• How we set up the study

Manual Only

N=18

Family Support Group

N=20

•CAMH, Toronto

•Elmgrove, Brockville

•CAMH, Toronto

•Elmgrove, Brockville

Skinner & O’Grady 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

O’Grady & 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

O’Grady & Skinner 2006

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Journey As Destination

Journey Into Illness Journey Through Illness Journeying On

Preoccupation Renewal

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An interconnected process

Practice

Research

KnowledgeMobilization

Skinner & O’Grady, 2009

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Resource Development

A Family Guide to Concurrent Disorders&

Companion Facilitators’ Guide

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Contents1. 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’ GuideI: Overview

II: Evidence base

The case for working with familiesThe case for psychoeducationThe case for family education and support programsSupporting Families Affected by Concurrent Disorders

III: Working with families

IV: Preparation

Getting organizational support for family programsChoosing a delivery methodAdapting the programStructureRecruitmentFollow-up

…continued

O’Grady & Skinner 2007

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Facilitators’ Guide (continued)V: Implementation

Checklists and guidelinesRole of facilitatorsChallenges

V1: Evaluation

Tools for measuring impactQualitative measures

VII: Session outlines

Session goalsContent outlineActivitiesFacilitators’ notes

Glossary

References

Resources O’Grady & Skinner 2007

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An integrative process

Practice

Research

KnowledgeMobilization

Skinner & O’Grady, 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 (O’Grady & 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 relative’s symptoms of mental illness and substance abuse

• Work tirelessly to find appropriate treatment / ensure follow-up of treatment plans (e.g. medication, attendance at doctor’s 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. 25

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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 (< 9 months) to long-term (> 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, > 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 > 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

…