AN OVERVIEW OF

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• AN OVERVIEW OF
• A LONGITUDINAL EVALUATION OF FAMILY INITIATIVES
  IN COMMUNITY MENTAL HEALTH IN ONTARIO
• Katherine Boydell1, John Trainor2
• Darryle Jadaa1,2
• 1The Hospital for Sick Children
• 2Centre for Addiction and Mental Health

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ABSTRACT

• Families represent the largest group of community
  caregivers for those with serious and persistent
  mental illness. Self-help/mutual aid (SHMA)
  organizations provide families with necessary
  support, education, and advocacy.
• This five-year study examines the impact of SHMA
  organizations at both the individual and systems
  levels using qualitative and quantitative
  methods. At the individual level, family members
  are asked about their experience of coping,
  social support, burden, empowerment, and
  participation in the family organization. At the
  systems level, key informants identify the
  critical issues related to the impact of SHMA.
  In line with a participatory research approach,
  family members are hired and trained as research
  assistants.
• Two hundred and seventy-nine family members are
  interviewed using structured questionnaires at
  baseline, nine months, and eighteen months.
  Structural equation modeling is used to analyze
  the data over time. Thirty-two qualitative
  interviews are being conducted that focus on the
  participants experience of being involved in the
  SHMA groups. A systems level tracking follows
  the organizations activities for a year.
• The existing literature on SHMA groups is
  primarily anecdotal and/or focuses solely on the
  individual. This study provides a unique
  opportunity to address the gaps in the knowledge
  base regarding SHMA organizations.

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COMMUNITY MENTAL HEALTH EVALUATION INITIATIVE
(CMHEI)

• This family study is part of a larger, multi-site
  evaluation of community mental health programmes
  in Ontario entitled the Community Mental Health
  Evaluation Initiative (CMHEI). The Initiative
  consists of eight studies covering the areas of
  
• assertive community treatment (2)
• case management (1)
• consumer initiatives (1)
• family initiatives (1)
• crisis response/emergency services (2) and, an
• explaining outcomes study (1).
• While these eight studies are run independently,
  a common pool of data is collected from all
  participants across all studies. The completion
  date for the CMHEI is December, 2003.

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WHAT IS A FAMILY INITIATIVE?

• In our study, a family initiative refers to a
  Self-Help/Mutual Aid organization that is created
  and run by family members for the benefit of all
  those who have a relative with a mental illness.
  SHMA organizations fulfill four primary roles
• support
• education
• advocacy and,
• research.
• And thats the basic reason why we get involved.
  Because obviously with the hope, if I do
  something and another person does something,
  maybe it will benefit mental health and
  eventually improve the whole outlook of mental
  health.
• Family Member

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COMMUNITY SHMA PARTNERS

• Family Association for Mental Health Everywhere
  (FAME)
• FAME welcomes all families who have a relative
  with mental illness, regardless of their
  diagnosis. There are currently four branches of
  FAME located in or around the GTA with a
  membership of approximately 600 members.
• Schizophrenia Society of Ontario (SSO) (Toronto)
• The central mission of the SSO (Toronto) is to
  provide support to families and professionals,
  conducted in an atmosphere of social concern and
  respect for scholarly inquiry into the nature,
  causation, prevention, and treatment of
  schizophrenia. There are currently 400 families
  involved with SSO (Toronto).
• Mood Disorders Association of Ontario (MDAO)
• MDAO is a non-profit organization committed to
  improving the quality of life of people who
  experience mood disorders, their family and their
  friends. The Toronto group of MDAO has an active
  membership of 800 family members and consumers.

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STUDY PARTICIPANTS RECRUITMENT

• Criteria for participation
• a family member with a living relative who has
  been diagnosed with a mental illness
• a member of one or more of three SHMA partners in
  the study and,
• over the age of 18.
• An honorarium of 25.00 per completed interview
  is given to the SHMA organization with which the
  family member is affiliated. Family members who
  complete the qualitative interview receive
  50.00.
• Recruitment initiatives
• membership mailings
• newsletter inserts and articles
• telephone calls to individuals suggested by the
  organizations and,
• presentations at SHMA meetings.
• The recruitment area covers the Greater Toronto
  Area and the Southwest/ Central Region from
  Burlington to Windsor.

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INDIVIDUAL LEVEL METHODS - QUANTITATIVE

• Participants are interviewed by our family member
  research assistants at baseline, 9 month, and 18
  month intervals. Questionnaires cover the areas
  of
• empowerment
• self-efficacy
• burden
• coping
• social support
• hope
• stigma
• involvement and,
• degree type of participation in the SHMA
  organization.
• A common pool of data regarding the family
  members ill relative is collected for use in the
  overall CMHEI study.
• Data regarding the family members participation
  in the SHMA is also collected every three months
  by telephone.

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STRUCTURAL EQUATION MODELING (SEM)

• Structural equation modeling (SEM) is used to
  investigate how the variables in the study are
  related. The strength of SEM is that it models
  covariances. This entails proposing a set of
  relations and evaluating their consistency with
  the relations manifest in an observed covariance
  matrix. SEM is also particularly appropriate for
  analyzing longitudinal data as it explicitly
  acknowledges measurement error associated with
  repeated testing.

Baseline
9 Months
18 months
Participation
Burden
Social Support
Coping
Empowerment
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INDIVIDUAL LEVEL METHODS - QUALITATIVE

• Semi-structured, in-depth interviews are being
  conducted with 36 family members (12 from each
  organization). Sampling is purposive rather than
  random. Family members who have varying levels
  of involvement in the SHMA organizations are
  chosen.
• The family member research assistants assisted
  the investigators in designing the open-ended
  questions. Their experience in interviewing the
  family members, as well as personal knowledge,
  was pivotal in the formation of the following
  areas of questioning
• pathways to self-help
• nature of involvement in SHMA organizations
• family members experience/satisfaction/dissatisfa
  ction
• family members understanding of self-help and,
• how the SHMA organization has affected their
  relationship with their ill relative.
• These interviews are audio-taped, transcribed
  verbatim, and converted into the format required
  for use with The Ethnograph, a computer-assisted
  program for the analysis of text-based data.

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SYSTEMS LEVEL METHODS - QUANTITATIVE

• A longitudinal design is in progress to track
  program activities and processes designed to
  create change (e.g., education, advocacy) as well
  as actual systems impacts (e.g., changes in
  policy or practice of mainstream organizations).
  A cumulative log is being kept of activities
  designed to change and educate mental health
  services, policy, planning and the broader
  community. Actual impacts of these activities
  are also being recorded. An example of our
  tracking log follows.

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SYSTEMS LEVEL METHODS - QUALITATIVE

• Qualitative focus groups with key informants
  (family members, mental health professionals,
  consumers, and planners) will address the
  development of the family organization and the
  critical issues related to systems interactions.
  The semi-structured questions will focus on areas
  such as
• What are the tasks, processes, and critical
  issues at different points in time in the
  development and evolution of these organizations,
  the community, and relevant policy in the context
  of the activities of family organizations?
• What impact has policy change had on family
  members?
• This is my mission in a way, you know? To work
  as much as I can to improve this system and
  that doesnt go only within the community. We
  have to work so that we become policy makers.
• Family Member

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PRELIMINARY FINDINGS - QUANTITATIVE

• Demographics
• The majority of our sample is female (75) and
  married (59) with a mean age of 59.5 years. The
  average level of education of our participants is
  one year of post-secondary schooling.
• 60 of our sample are parents of a person with a
  mental illness, 19 are spouses, 11 are
  siblings, 4 are children and 6 are other
  relations.
• 43 of our sample live with their ill relative.
  Of the 57 that do not, 61 have either daily or
  weekly contact with their ill relative.
• Burden
• Those who live with their ill relative experience
  significantly more burden (M53.77) than those
  who do not (M44.26) (F16.58 p.000).
• Spouses report significantly more burden
  (M53.86) than siblings (M40.15) (F2.86
  p.024).
• Coping
• Parents report significantly better coping
  (M131.25) than siblings (M123.24) (F3.75
  p.009).
• Females report significantly better coping
  (M131.07) than males (M123.56) (F14.25
  p.000)

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PRELIMINARY CONCLUSIONS

• Families are involved in a daily, ongoing
  supportive role whether or not their ill relative
  lives with them.
• Families benefit from the support, education, and
  advocacy that SHMA organizations provide.
• Although SHMA organizations support large numbers
  of family members, they are an unacknowledged and
  under-funded arm of the mental health system.
• I came to the point when I thought I would be
  able to give support to someone else.
• And its through these organizations that our
  son managed to be where he is today.
• Family Members