Innovations in End-of-Life Care
an international journal of leaders in end-of-life care

Yvette Colón, MSW, ACSW, BCD

[Citation: Colón Y. Online bereavement support. Innovations in End-of-Life Care, 2001;3(3), www.edc.org/lastacts]

There is no doubt that the loss of a loved one can be profoundly traumatic in physical, emotional and spiritual ways. Bereaved individuals seek help and support in a variety of traditional ways: individual grief counseling, bereavement groups and peer support groups. But with the expansion of the Internet, resulting in the ease of its use by the average person, many bereaved individuals are taking responsibility for their own emotional needs by using their computers to access online support groups and discussion forums.

It is no longer unusual for individuals to have personal computers and access to the Internet. Since the early 1990s, when the World Wide Web was made available for public use, grieving persons have easily found diverse online bereavement communities, where there are now many support and discussion forums. Clinical social workers and other mental health professionals have been involved in online discussion and support groups focusing on the many phases of the bereavement process. People with a shared history, shared values and a variety of interests regarding their grief experiences can connect and carry on a conversation with anyone around the world, all without leaving their own communities. The demand for online services is high and online group participation continues to increase.

Most of the literature available about online support falls into the category of anecdotal, narrative experiences of participation in virtual communities, or sociological studies of computer-mediated communication. Several studies have used qualitative methods. Few studies have looked at clinical interventions or any results of participating in online bereavement therapy or support, as participant or practitioner. A systematic evaluation of group outcomes in online support groups has not been done yet.

Galinsky, Shopler & Abell acknowledge that technology is beginning to play a small, but important role in group practice and consider the benefits and problems of technology-based groups.¹ Their study was a survey of the nature of their subjects' knowledge, experience and comfort with technology-based groups. The sample consisted of group practitioners who were members of the Association for the Advancement of Social Work with Groups.

Finn described a pilot project for an online support group and the advantages, disadvantages, potential for use as well as the benefit to group leaders and participants.² He noted again that there has been little systematic evaluation of computer-based self-help groups and no research about their use as an adjunct to face-to-face support groups.

In a study about computer-mediated support groups, Weinberg, Schmale, Uken, & Wessel asserted that although support groups can help people increase their coping skills, only a small percentage of people in a crisis will choose to participate in one.³ They noted that computer-mediated groups have the potential to serve those who are unwilling or unable to participate in a face-to-face group. Their qualitative study highlighted an online support group pilot project with six breast cancer patients and discussed the advantages as well as limitations of this modality.

Online groups can be conducted in three different ways: as a chat group, a bulletin board or a listserve (mailing list). A chat group (or chat room) is a real-time exchange in which everyone is at their computer at the same time using a special program so that the entire group can communicate with each other. A bulletin or message board is a program or location (usually on the World Wide Web) in which participants can read and write messages at any time that can be read by any other participant, remain indefinitely, are posted sequentially and are often organized by topic. A listserve is a private email group in which each subscriber receives a separate copy, via email, of each message that is posted and can maintain ongoing communication with other list members who share a common concern. All of these groups are available through the Internet at no charge to the participant.

Anyone contemplating starting an online bereavement group or discussion forum must be comfortable communicating online. Previous participation in an open online bereavement, mental health or professional forum helps a facilitator understand the process from the participant's point of view.

There are practical matters to consider in forming an online bereavement group. Facilitators must be knowledgeable about and comfortable with the technology they are using. They must understand how people interact in text-based environments and be aware of issues involved in computer-mediated communication. They must be able to build a community, foster a sense of trust and guide effective and therapeutic interactions among group members. The definition, role and scope of responsibilities of the facilitator must be well thought out. A statement of format, guidelines, duration of group and what is expected from participants can be sent out as an announcement. All email exchanges and postings to the group should remain as secure and as confidential as possible. The facilitator should have a stated policy for crises and emergencies experienced by the participants.

Participants in an online group must be able to write and express themselves adequately in order to participate in an online group. If the bereavement group is a closed group with limited membership and time span, this can be assessed via email responses to screening questions. Facilitators can recruit from hospitals, clinics, community organizations or their own agency. Once participants are screened and accepted into a bulletin board or mailing list, they have access to the group 24 hours a day, seven days a week for the duration of the group. They should be encouraged to send as many messages as they would like, as long as the messages are on topic. Because anything can happen in an online group in any 24-hour period, it is very important for the facilitator to log in at least once each workday in order to read postings or email, respond to questions and concerns and guide the group.

Facilitators must be aware that the physical and verbal cues on which they rely will be missing or different in an online group. The facilitator must pay close attention to language, engagement, and the ways group members write and express themselves. The facilitator must be more active and sometimes more directive in the group to make up for the lack of eye contact and body language.

Online bereavement support groups have the potential to provide many benefits to the participants. First, participants sometimes develop personal relationships with each other and have individual contact outside of the group, sharing information and extending the network of support. Second, the level of intimacy and trust can be greater because participants may feel more comfortable disclosing and discussing their concerns in writing. Finally, because there are no time restrictions, as there are in face-to-face groups, members of bulletin board bereavement groups can participate as much as they wish at times that are most helpful to them.

However, the text-based nature of the group environment presents a challenge. The written word can be stark and direct; humor and sarcasm can be misinterpreted easily and feelings can be hurt. Participants must be able to write effectively in order to get the maximum benefit from an online discussion. Group leaders must be skilled to facilitate the discussion, mediate conflict and support all members through writing alone. Clinical supervision and knowledge of resources for conducting online support groups are critical.

Social workers and mental health professionals have written extensively about these benefits.^4,5,6 More than ever before, online bereavement communities are able to sustain people who step forward to request support and information. There is a huge increase in sophistication among online users. More people have been in cyberspace for longer periods of time than ever before. This, in turn, fosters the creation and expansion of Internet communities into places where people are not afraid to ask questions, tell their stories, share their grief or seek help.

ONLINE BEREAVEMENT RESOURCES:

Bereaved Families Online offers support for people who have lost an immediate family member. http://www.inforamp.net/~bfo/

Cancer Care, Inc. provides a special section on end of life and bereavement as well as online bereavement groups facilitated by certified social workers.
http://www.cancercare.org/campaigns/end_life1.htm
http://www.cancercare.org/services/online3.htm

Grief and Loss in the Workplace provides guidelines and resources for co-workers, managers and supervisors. http://www.umich.edu/~hraa/griefandloss/reactions.html

Grief Net offers numerous discussion and support groups for bereaved persons (in email listserv format) and a variety of resources related to death and major losses. http://griefnet.org/

Grief Recovery Online features message boards, chat groups and resource listings. Spanish language groups are available. http://www.groww.org/

Growth House offers extensive grief and bereavement section, including a chat room and information about general and family bereavement, pregnancy loss and infant death, and helping children with grief and illness. http://www.growthhouse.org/death.html

HospiceNet offers extensive information about grief and bereavement, including issues regarding children and adolescents http://www.hospicenet.org/html/bereavement.html

KidsAid is an online support group for children dealing with any kind of loss. It includes artwork, stories and poems. http://kidsaid.com/

WidowNet is an information and support group resource for, and by, men and women of all ages, religious backgrounds and sexual orientations who have suffered the death of a spouse or life partner. http://www.fortnet.org/WidowNet/

STANDARDS OF PRACTICE, ETHICAL GUIDELINES, AND ONLINE RESOURCES:

American Counseling Association
Ethical Standards for the Practice of On-line Counseling
http://www.counseling.org/gc/cybertx.htm

Community Building on the Web
http://www.naima.com/community

The International Society for Mental Health Online
Suggested Principles for the Online Provision of Mental Health Services
http://www.ismho.org/suggestions.html

National Board for Certified Counselors
Standards for the Ethical Practice of WebCounseling
http://www.nbcc.org/ethics/wcstandards.htm

Psychology of Cyberspace
http://www.rider.edu/users/suler/psycyber/psycyber.html

The Psychology of Virtual Communities
http://www.concentric.net/~Astorm/

Psychotherapy on the Internet
http://www.nyreferrals.com/psychotherapy/

Suggested Reading

Fink J. (ed.) How to use Computers and Cyberspace in the Clinical Practice of Psychotherapy. Northvale, NJ: Jason Aronson, 1999.

Gackenbach J. Psychology and the Internet: Intrapersonal, Interpersonal, and Transpersonal Implications. New York: Academic Press, 1999.

Grohol JM, Zukerman EL. Insider's Guide to Mental Health Resources Online: The Clinican's Toolbox (2nd Edition). New York: Guilford Press. 1999.

LaBruzza A. The Essential Internet: A Guide for Psychotherapists and Other Mental Health Professionals. Northvale, NJ: Jason Aronson, 1997.

Rosen LD, Weil MM. The Mental Health Technology Bible. New York: John Wiley & Sons, 1997.