By Pauline S. Powers, MD, & Caroline Nguyen, MSW,
Reprinted from Eating Disorders Review
July/August 2009 Volume 20, Number 4
©2009 Gürze Books
During the last 20 years, with the advent of managed care, access to treatment has become so limited for patients with eating disorders in the U.S. that many people urgently in need of care no longer even attempt to get treatment.
As we looked for alternative ways of engaging patients in treatment, we learned of Sheena’s Place in Toronto, Canada. This community-based treatment center was established in 1993 after the death of the daughter of an employee of the Sun Media Corporation. Shocked and angry, but determined to find a way to prevent other such tragedies, members of the community, including Sheena’s mother and faculty members from the University of Toronto, met and donated enough money to purchase a house in the center of Toronto. They named it “Sheena’s Place.” (www.sheenasplace.org). The goal was to provide free support groups for patients on the waiting list for eating disorders treatment.
The key finding from the first assessment was that the group participants were more ill than the patients in standard treatment.
The group established a wide array of support groups and supported the programs with donations from the community. The program is well- known, accessible, and free to people suffering from eating disorders, and their families and friends. Three similar programs have been started in other parts of Ontario.
Laying the Foundation for Hope House
Three years ago, we decided to start a program based on Sheena’s Place, and received funding from the Hilda and Preston Davis Foundation to start the University of South Florida Hope House for Eating Disorders. Just as at Sheena’s Place, USF Hope House is free to people with eating disorders and to their families. However, there were several differences between our program and that at Sheena’s House.
First, we located our program within the University of South Florida, with the goal of utilizing the program to teach trainees in psychiatry and primary care. Second, we planned to institute a quality assurance and outcome evaluation during the second year. Third, the health care system in the United States is very different from the Canadian system, and this was considered in the plan. For example, although people with eating disorders in Canada do not have to struggle with issues related to managed care, access to care is frequently limited by long waiting periods. Thus, a typical question for people coming to Sheena’s Place is about their position on the waiting list for inpatient or outpatient treatment, whereas here many Floridians do not have health insurance (the figure is 20%, according to www.coverfloridahealth.com) and thus are unable to access formal treatment.
Another difference is that although technically many of those suffering from eating disorders would be able to attend mental health centers on a sliding-fee scale, very few professionals at these centers are trained to treat people with eating disorders. In the Province of Ontario, there is a Provincial Network of Specialized Eating Disorder programs that provides training for community-based practitioners to better serve their patients with eating disorders, and for educators to learn up-to-date prevention strategies.
A final difference is that all of the groups at Sheena’s place are conceptualized as support groups (although they are led by healthcare personnel experienced in the treatment of eating disorder patients or other professionals with counseling experience). At Hope House, we describe most of the groups as supportive intervention groups (although there are two groups that are typical support groups, which are professionally led). A supportive intervention group is intended to be therapeutic as well as being supportive.
Hope House is now in its third year. The groups are generally held on a seasonal basis. Initially there were three groups with a total of 18 participants; today there are 11 groups with almost 60 participants. The initial groups were Cognitive Behavioral Groups and Art Therapy, which are still offered. However, now there are groups for patients of different ages, a Parents’ Training Group, and a Pilates group led by a credentialed Pilates teacher who is also a PhD psychologist. Table 1 lists programs currently offered at USF Hope House.
Most groups are held in the evenings; however, a Symptom Management Group and a novel lunch group now meet during the day. Initially there were few eating disorder specialists involved, and thus few professionals who could lead the supportive intervention groups. This problem has been partially resolved by starting a Study Group for professionals who are treating eating disorder patients or who would like to learn more about treating these patients.
The group meets monthly, with presentation of a case and discussion by experienced members of the group. In addition, as Hope House has become better known and as new professionals have moved into the area, more experienced leaders have become available.
Although participants do not pay to attend the groups, the leaders are paid an honorarium for each 90-minute group session they lead. While the honorarium is not comparable to what they would earn in their own practices, the group leaders have been very committed to the concept of Hope House and to expanding the offerings in our community.
Outcome Evaluation and Quality Assurance
Outcome evaluation began in the second year, and preliminary results were presented at USF Research Day in February 2009. Finding a method of quickly obtaining information that would allow us to evaluate the effectiveness of the program has been difficult. Table 2 lists the key questionnaires utilized for a subset of the groups offered. One problem was that some of the responses to the questionnaires used (e.g., the Eating Disorders Inventory-3, or EDI-3; Garner, 2004) would be unlikely to change dramatically during the relatively brief (8-week) session groups. This has been partially overcome by choosing instruments likely to reflect changes that occur over a relatively brief period. For example, the Emotional Assessment Scale (Carlson et al., 1989) can reflect change over the course of one group meeting.
Another problem was that the initial questionnaires were lengthy and as a result were sometimes resented by the attendees. We have utilized several strategies to address this challenge. First, most attendees now realize that the goal is to assess effectiveness and that we change our strategies if the program is not helpful. Since we realized that not all people who registered actually attended the groups, we have changed the system so that the tests are completed before the first group session, partially to eliminate interference with initial group cohesion and partially to ensure that registrants will be more likely to attend if they come to complete the forms prior to the onset of the group sessions.
Secondly, we chose somewhat different questionnaires than before, those that can be completed more rapidly. For example, the Emotional Assessment Scale can be completed within 5 minutes.
The key finding from the first assessment was that the group participants are more ill than are patients in standard treatment. The EDI-3 was administered to all participants at the beginning of the groups during one season. As shown in Figure 1, the surprising finding was that scores on the key scales (body dissatisfaction, drive for thinness, and bulimia) for Hope House participants were higher than the validity scores from patients in traditional treatments. Although initially we thought that some participants would have shorter durations of illness and that a supportive intervention would be sufficient for recovery, this has not been the pattern we have seen. As illustrated by the findings from the EDI-3, many, perhaps most, attendees are seriously ill and have often been ill for many years.
Although we hoped that postdoctoral trainees in psychiatry, psychology, and social work would be actively involved at Hope House, this has not generally been the case. This may be in part because of the attitude of some of the attending professors. For example, when the Chief of Child Psychiatry was approached to invite him and the child fellows to participate, he said that he would “rather have a root canal than treat an eating disorder patient.” Undoubtedly, this viewpoint is unlikely to encourage child fellows to attend. Nonetheless, one child fellow has been actively involved with Hope House and is currently involved in research in eating disorder treatment outcome.
The main trainees who have been involved have been medical students at every level and dietetic interns from the local Veterans Administration Hospital. Medical students who have completed their first year have been actively involved in research as part of a program initiated by the Dean of the Medical School called “Scholarly Concentration in Research.” The student receives a stipend for the summer after the first year and works on the project until he or she graduates from medical school. Fourth-year students who are “acting interns” frequently rotate through Hope House and participate in groups, particularly the Parent Training Group and Friday afternoon Drop-in Hours.
Development and the Future
A key issue from the onset of Hope House has been how to continue to finance its operation. Special fundraising events are held annually, and this year about one-third of the expenses of Hope House can be met by the funds raised. Mastering development (the art of fundraising) has been difficult as we have little to no experience (and no training) in this field. We do now have a dedicated staff and a group of volunteers ready to assist us. Learning how to leverage our experience and commitment of the project is our next challenge.
In May, Miss America 2008 visited Hope House and met with participants, families, and others interested in Hope House. This resulted in significant press coverage that is likely to raise awareness of eating disorders and the programs that are available at Hope House.
With more community-awareness events and outreach into schools and other organizations, we hope to significantly raise knowledge of these deadly illnesses and to attract the interest of others who can replicate the Hope House model in their own communities.
References and Resources
Eating Disorders Inventory-3™ Garner DM. (2004). Eating Disorder Inventory-3 Professional Manual. Psychological Assessment Resources, Lutz, FL.
Emotional Assessment Scale: Carlson CR, Collins FL, Stewart JF, et al. The assessment of emotional reactivity: a scale development and validation study. J Psychopathol Behav Assess 1989; 11:313.
Eating Disorder Quality of Life: Engel SG, Wittrock DA, Crosby RD, et al. Development and psychometric validation of an eating disorder-specific health-related quality of life instrument. Int J Eat Disord 2006; 39: 62.
Trait Hope Scale: Snyder C R, Harris C, Anderson J R, Holleran SA, Irving LM, Sigmon ST et al. (1991). The will and the ways: Development and validation of an individual-differences measure of hope. J Personality Soc Psychol 2002; 6: 570-585. (Snyder, et al, 2001)
Figure Rating Scale: Stunkard A, Sorenson T & Schulsinger F (1983). Use of the Danish adoption register for the study of obesity and thinness. In S. Kety, L. P. Rowland, R. L. Sidman, & S. W. Matthysse (Eds.), The Genetics of Neurological and Psychiatric Disorders (pp. 115-120). New York, NY: Raven Press.
Eating Attitudes Test: Garner DM, Garfinkel PE. The Eating Attitudes Test: An index of the symptoms of anorexia nervosa. Psycholog Med 1979; 9:273-279.