Name of Intervention: Journey of Hope
Principal Investigator (s): Susan Pickett-Schenk, Ph.D.
Institutional Affiliation: University of Illinois at Chicago
The Journey of Hope (JOH) is an 8-week course that teaches families about the causes and treatment of mental illness, provides problem-solving and communication skills training, teaches families how to work with service providers, and offers emotional support. JOH is a family-led program: all instructors are family members of persons with mental illness. This program is available to any caregiver of a person with mental illness, including parents, siblings, adults children, spouses, other relatives, or friends. Families are encouraged to attend the course together; however, so that family members may talk openly about their situations, their ill relatives (the person with mental illness) is not permitted to participate. Classes are 1 ½- 2 hours long, and meet once a week for eight consecutive weeks. Classes range in size from 10-15 participants. The course focuses on the biological causes and clinical treatments (i.e., medications) for schizophrenia, schizoaffective disorder, depression, bipolar disorder, and obsessive-compulsive disorder. Participants are taught to recognize the symptoms of each of these disorders, coping techniques, and how to avoid relapse. Other topics include brain biology, substance use, avoiding relapse, solving illness-related problems, improving communication with ill relatives, finding local services, emotional coping and self-care, and helping relatives achieve recovery from mental illness.
In our study, 462 family members of adults with mental illness were randomly assigned to the immediate receipt of JOH (intervention group) or to a 9-month course waiting list (control group). Results show that participation in JOH increases family members’ knowledge of the causes and treatment of mental illness and knowledge of problem-solving skills; decreases their need for information on topics related to mental illness; improves family members’ feelings about their relationships with their ill relatives; decreases family members’ depressive symptoms; and increases their satisfaction with the mental health service system. These improved outcomes occurred for JOH participants at the end of the course and were maintained six-months post-program participation.
Family education, mental illness
JOH uses scripted lectures, videotapes, informational handouts, and group exercises. Classes are interactive and encourage group discussion. The program is currently in flux, with debate over ownership. For more information about JOH and its program materials, contact Dr. Pickett-Schenk at firstname.lastname@example.org.
All instructors must be (1) a family member of a person with mental illness; (2) a JOH graduate (i.e., have taken the JOH course); and (3) complete an intensive weekend training on how to teach the course.
Teachers volunteer their time. Classes are free to participants, and do not charge participants for materials. Typically, classes are held in the community at locations that do not charge for meeting space, such as public libraries or churches. Other costs of materials are currently unknown.
JOH is not a support group and may not be appropriate for families who are looking for a place to talk with others about mental illness-related problems. The goal of the program is to improve family members’ abilities to cope with their relatives with mental illness, and does not focus on how to improve consumer (i.e., ill relative) outcomes. However, the JOH emphasizes consumer recovery, and family members learn how to work with their ill relatives to help them achieve their personal goals.
The goal of this NIMH-funded study was to examine the effectiveness of the JOH education intervention in improving families’ ability to cope with their relatives’ mental illness. The study was conducted from 2000-2005 in three sites in Louisiana: Baton Rouge, Lafayette, and New Orleans. We used a randomized wait-list design in order to determine whether changes in family members’ outcomes were due to their participation in the JOH course. Thus, in each site, family members who enrolled in the study were randomly assigned to either the intervention or control group. A total of 462 family members enrolled in the study: 231 were assigned to the intervention group, and 231 were assigned to the control group. The majority of study participants were female (81%) and Caucasian (85%). Slightly more than half (55%) were parents of a person with mental illness; 13% were adult children; 12% were siblings; another 12% were spouses, and the remainder were other relatives or friends. An overwhelming majority (73%) had never received any education or support services prior to enrolling in the study. Slightly more than half of participants’ ill relatives were male (53%), and their most common primary diagnosis was bipolar disorder. On average, relatives had been ill for 14 years and had experienced 3 inpatient hospitalizations. Forty-five percent of the ill relatives lived with the family member who participated in the study. Participants were interviewed at three time points: at enrollment, 3 months post-enrollment (which coincided with the end of the JOH course for the intervention group), and 8 months post-enrollment (which was 6 months post-JOH course termination for the intervention group). Our results show that, compared to control group participants, family members who received JOH reported increased knowledge of the causes and treatment of mental illness and knowledge of problem-solving skills; decreased need for information on topics related to mental illness; more positive feelings about their relationships with their ill relatives; decreased depressive symptoms; and increased their satisfaction with the mental health service system. As noted above, these improved outcomes occurred for JOH participants at the end of the course and were maintained six months post-program participation. Family members who participated in the JOH course attended, on average, 6 of the 8 classes. They reported high levels of satisfaction with the course. JOH participants reported that their peer instructors were well-prepared, well-informed, and empathic. Most notably, participants stated that their instructors were good role models, and gave them hope that they too, could cope well with their relatives’ mental illness.
Pickett-Schenk, S.A., Cook, J.A., Steigman, P., Lippincott, R., Bennett, C., & Grey, D.D. (2006). Psychological well-being and relationship outcomes in a randomized study of family-led education.
Archives of General Psychiatry, 63, 1043-1050.
Pickett-Schenk, S.A., Bennett, C., Cook, J.A., Steigman, P., Lippincott, R., Villagracia, I., & Grey, D. (2006). Changes in caregiving satisfaction among relatives of adults with mental illness: Results of a randomized evaluation of a family-led education intervention. American Journal of Orthopsychiatry, 76(4), 545-553.