July 2008

Grant Results

SUMMARY

From 1999 to 2001, researchers in the Department of Psychiatry at the University of Maryland School of Medicine, Baltimore, conducted a study to evaluate the effectiveness of the Family-to-Family Education Program, a widely used program for families of persons with serious mental illness.

Family members caring for mentally ill kin often report feeling overwhelmed, frustrated and abandoned. While family-focused peer support and education programs to reduce patient relapse and to enhance both patient and family well-being have grown in popularity, these programs have not been rigorously evaluated.

The most widely used peer-led program is the Family-to-Family Education Program, developed in the early 1990s by the National Alliance for the Mentally Ill, Arlington, Va.

This is a 12-week program taught by well-trained family member volunteers using a highly structured scripted manual to provide information about mental illnesses, treatments and rehabilitation.

Key Findings
The investigators reported the following findings in an article that is in press at a peer-reviewed journal, Acta Psychiatrica Scandinavica:

  • When the program ended, persons attending the Family-to-Family Education Program reported:
    • Less subjective burden of illness.
    • Increased empowerment.
    • Greater knowledge of serious mental illness and the mental health system.
    • Greater ability to cope with illness, compared with pre-program results.
  • The program had no significant impact on the objective burden of illness.
  • Although symptoms of depression significantly improved during the study period, the investigators could not clearly establish a relationship between this finding and the Family-to-Family Education Program.

Funding
The Robert Wood Johnson Foundation (RWJF) supported the evaluation with a grant of $202,401 from November 1999 to October 2001.

 See Grant Detail & Contact Information
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THE PROBLEM

Family members caring for mentally-ill kin often report feeling overwhelmed, frustrated and abandoned. While family-focused peer support and education programs to reduce patient relapse and to enhance both patient and family well-being have grown in popularity, these programs have not been rigorously evaluated.

The most widely used peer-led program is the Family-to-Family Education Program, developed in the early 1990s by the National Alliance for the Mentally Ill. This is a 12-week program taught by well-trained family member volunteers using a highly structured scripted manual to provide information about mental illnesses, treatments and rehabilitation. Participants also learn self-care and communication skills, problem-solving strategies and advocacy techniques, and they have opportunities to give and receive support from others in similar situations. At the time of the grant, the Family-to-Family Education Program, which receives more state funding than any similar program, was being piloted in more than 35 states, highlighting the need for a formal evaluation.

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THE PROJECT

Researchers in the Department of Psychiatry at the University of Maryland School of Medicine conducted a study to evaluate the effectiveness of the Family-to-Family Education Program.

Investigators recruited family members who had signed up for the program and were on a waiting list that was at least three months long. Ninety-five family members agreed to four interviews (to be conducted while they were on the waiting list and just prior to, immediately after and six months after completing the 12-week program). Study participants attended one of 15 classes held between February and November 2000 in six Maryland counties and the city of Baltimore.

The investigators used these scales and instruments to evaluate the impact of the intervention on family caregivers: the Family Experience Interview Schedule; the Center for Epidemiologic Studies Depression Scale; the Self-Esteem Scale; the Mastery Scale; the Family Empowerment Scale; and the Family-to-Family Scale. The Family Member Questionnaire was created specifically for this study.

The following outcomes were assessed:

  • Subjective burden — the emotional experiences of family members, e.g., anxiety, fear, grief, exhaustion and depression.
  • Objective burden — the challenges inherent in caring for a seriously ill family member, e.g., changes in family roles and schedules, financial drain, the concrete tasks of coping with an ill member's needs, and dealing with the mental health system.
  • Empowerment — a multidimensional social process that helps people gain control over their lives.
  • Depression — the presence of depressive symptoms, e.g., sadness, lack of enjoyment, and change in appetite and sleep patterns.

The investigators also asked family members about their knowledge of serious mental illness, their understanding of the mental health system and the degree to which they took care of themselves.

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EVALUATION FINDINGS

The investigators reported the following findings in an article that is in press at a peer-reviewed journal, Acta Psychiatrica Scandinavica:

  • When the program ended, persons attending the Family-to-Family Education Program reported less subjective burden of illness, increased empowerment, greater knowledge of serious mental illness and the mental health system and a greater ability to cope with illness, compared with pre-program results.
  • The program had no significant impact on the objective burden of illness.
  • Although symptoms of depression significantly improved during the study period, the investigators could not clearly establish a relationship between this finding and the Family-to-Family Education Program.
  • The study found no changes during the period families were waiting for a class to begin, suggesting that the program itself was responsible for observed changes.
  • Participants sustained the improvements noted above six months after completing the program.

Communications

The investigators' article, "Outcomes of the Peer-Taught 12-Week Family-to-Family Education Program for Severe Mental Illness," is in press at Acta Psychiatrica Scandinavica, a peer-reviewed psychiatry journal (see the Bibliography). The principal investigator has presented findings from the study at about 15 professional meetings, including the annual meeting of the American Psychiatric Association in May 2002.

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LESSONS LEARNED

The project director offers two lessons:

  1. It is important to have buy-in on a research study of peer-based programs from those involved.
  2. Designing the evaluation so that the selected evaluators have some connection to the subject matter — perhaps because they have a relative with mental illness — is useful to enhance collaboration.

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AFTER THE GRANT

With a grant from the Women's Health Research Group at the University of Maryland in Baltimore, the project team conducted a study on the qualitative effects of the Family-to-Family Education Program. Researchers interviewed 31 recent program graduates about their experience and catalogued the results, publishing the findings in an article in the American Journal of Community Psychology (in press as of June 2008).

When questioned about perceived benefits from the program, study participants noted:

  • An enhanced understanding of mental illnesses and their treatment.
  • Less frustration regarding the lack of control inherent in caring for a mentally-ill family member.
  • Improved communication with ill relatives.

In the article, researchers suggested that these benefits led to increased quality of life for both program participants and their mentally-ill relatives. The researchers recommended that Family-to-Family staff ensure the continued availability of the program. As of 2008, the Family-to-Family Education Program is offered in all 50 U.S. states, as well as in Puerto Rico, the U.S. Virgin Islands, Canada and Mexico.

In 2007, the project team received a grant from the National Institute of Mental Health to conduct a randomized trial of the program.

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GRANT DETAILS & CONTACT INFORMATION

Project

Evaluation of An Education Program For Families of Persons with Serious Mental Illness

Grantee

University of Maryland School of Medicine (Baltimore,  MD)

  • Amount: $ 202,401
    Dates: November 1999 to October 2001
    ID#:  035623

Contact

Lisa Dixon, M.D., M.P.H.
(410) 328-6325
Ldixon@psych.umaryland.edu

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BIBLIOGRAPHY

(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)

Articles

Dixon L, Lucksted A, Stewart B, Burland J, Postrado L, McGuire C and Hoffman M. "Outcomes of the Peer-Taught 12-Week Family-to-Family Education Program for Severe Mental Illness." Acta Psychiatrica Scandinavica, 109(3): 207–215, 2004. Abstract available online.

Lucksted A, Stewart B, Dixon LB and Forbes C. "Benefits and Changes for Family to Family Graduates." American Journal of Community Psychology. In press. Abstract available online.

Survey Instruments

"The Family Member Questionnaire (FMQ)." University of Maryland School of Medicine, used in family member interviews, February and November 2000.

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Report prepared by: Kelsey Menehan
Reviewed by: Karyn Feiden
Reviewed by: Marian Bass
Program Officer: Rosemary Gibson