ED Parent Support Project

Investigator

Daniel Le Grange, PhD

Please Help Us Determine the Effectiveness of an Internet-based Chat Support Group for Parents Involved in Family-based Treatment for Adolescent Eating Disorders 

The University of Chicago Eating Disorders Program is conducting a two-year study to evaluate the helpfulness of a therapist-guided, internet chat support group for parents using family-based treatment for adolescent eating disorders. This study is a collaborative project with the Center for Psychotherapy Research at the University Hospital Heidelberg, Germany; participants will be recruited from the University of Chicago, the Emily Program, and two private practices in Minnesota. This research is being funded by the Alexander von Humboldt Foundation in Germany.

  • You are needed if you are a parent/primary caregiver involved in family-based treatment.
  • The study requires that you fill out questionnaires on-line and participate in a therapist-guided, internet chat support group with other parents who are also implementing family-based treatment.
  • 15 support group sessions will be provided over a 5 month period.

Background of the Project

Treatment outcome studies have shown that involving families in the treatment of adolescent anorexia nervosa and bulimia nervosa is helpful. However, few published studies have investigated the emotional impact of family-based treatment on the primary implementers of this treatment (i.e. parents or other caregivers). 

Eating disorder caregivers have reported that involvement in a support group composed of other caregivers who share similar challenges caring for an adolescent with an eating disorder would help to reduce feelings of isolation as well as provide an opportunity to share experiences and offer advice and reassurance about how to cope with the person in their care. 

Internet-delivered interventions offer several advantages including ease of use, accessibility, convenience, time-efficiency, and anonymity. On-line group participants have reported developing a sense of community similar to traditional face-to-face groups and offer a "virtual shoulder" to other members.

Aims of the Project

The purpose of this study is to examine the emotional impact of administering family-based treatment and to determine whether a therapist-guided, internet-based chat support group for parents who are implementing family-based treatment would be helpful.

Participants

Participants will be parents/primary caregivers of adolescents with Anorexia Nervosa and Bulimia Nervosa. Caregivers will be defined as those who are actively implementing family-based treatment for adolescents (ages 10-19) who meet criteria for Anorexia Nervosa, Bulimia Nervosa, or Eating Disorder-Not Otherwise Specified (Anorexia Nervosa or Bulimia Nervosa types). Participation of both parents/primary caregivers is not required. However, both parents/primary caregivers will be able to participate in the study if they have access to separate computers with internet connection. Below are the criteria that must be met to be included in this study.

  1. Actively involved in Family-based Treatment
  2. Diagnosis in Adolescent: Current Anorexia Nervosa, Bulimia Nervosa, or Eating Disorder-Not Otherwise Specified (Anorexia Nervosa and Bulimia Nervosa types)
  3. Living situation: Adolescent with the Eating Disorder must currently be living with the parent(s)/primary caregiver(s)
  4. Internet access for each participant (if both parents/primary caregivers would like to participate, each will need a separate computer with internet access)

Procedures

Once the study has been explained to you, and all your questions have been answered, you and your spouse/partner will be asked if you want to continue participating. If so, you will be provided with an overview of the study homepage. You will need to select a username (a pseudonym that you will use each time you login in to the system to complete questionnaires and to participate in chat sessions) and a password. Use of this username, rather than your actual name, will allow you to provide information for the study securely and communicate in the sessions confidentially. 

You will then need to register into the system by providing your activation code and e-mail address. After registering, you will receive a "welcome e-mail", that will include your chat group meeting time. You then will be able to access the chat program by entering the website address into your internet browser. In order to maximize the security of data transmission and chat communication, you will be prompted to enter your username (login) and password every time you enter the program to complete the questionnaires and participate in the chat sessions. Your password will be securely stored (encrypted). 

In order to help the group therapist know how you are doing before the chat and your opinion of how the session went, you will be asked to complete questionnaires before the first scheduled session, before and after chat sessions, mid-study, and at the end of your study participation. Your answers will be displayed as tables and graphs and will be viewed by your chat therapist only and not by other chat members.

Support Group Intervention 

Support groups will be limited to 8-10 parents who will meet in a chat room. A chat room is a virtual room where people can communicate in real time while on the internet. Users type their messages and the entered text will appear on the computer monitor along with the other members' texts. No one other than the group members and therapist will be allowed in the chat room. Groups will be "open", meaning that a new parent will be invited to join where a participant completes the group in order to allow parents who have just started family-based treatment or those who later decide to participate. 

Sessions will map onto the specific challenges associated with family-based treatment. Sessions fundamentally will be used to encourage and support parent efforts to help their child overcome an eating disorder. In addition, sessions will provide parents with an opportunity to express both positive and negative feelings associated with the caregiving experience. Parents will be assisted by fellow parents and the therapist in problem-solving difficulties they have experienced using family-based treatment, sharing ideas that have helped to take control of the eating process, helping parents choose more proactive coping, and managing acute crises. Information about eating disorders and family-based treatment also will be provided.

  • There will be 15 chat sessions over 5 months.
  • Chat groups will meet at set times for 90 minutes.
  • Groups will be guided by Dr. Roslyn Binford Hopf, who is a licensed clinical psychologist specifically trained in family-based treatment for adolescent eating disorders.