Issues of Privacy and Confidentiality in a Support Group
Pam Schechter

People are very sensitive about their medical information; and for very good reason. A person's medical history can impact their health and medical insurance, their life and long-term care insurance, their employment, and their personal relationships. The handling of medical information has become a topic of very serious debate and discussion and has been and continues to be the focus of important legislation on the national and state levels.

Support groups invariably will discuss people's most personal medical histories and information. That is one of the most important reasons for our existence. People need to be able to talk about their experiences. Given this important purpose for support groups, support group leaders carry a critical obligation to conduct their support groups in such a way as to offer the greatest respect to people's personal lives and information and to be very sensitive to their member's concerns about privacy and the handling of medical information.

Support group leaders have an obligation to provide information about the issues of privacy and confidentiality to their members. Assuring members' rights to privacy and confidentiality is an issue that should be introduced at the beginning of the meetings, especially when new members attend. Members can by word and deed, demonstrate that they can keep confidential what they know about other members.

In our support groups, the leader cannot guarantee that members will protect each other's privacy, but we can explain and discuss the issue with the group and work towards establishing a norm that specifies what we mean by privacy, as well as attempting to define the mutual expectations we have about confidentiality. Members ought to decide what information they will keep confidential and what information can be shared with family and friends. After all, if members are having a good experience at the meeting, it is natural and appropriate that they will talk about this experience with their family and friends. The issue of privacy and confidentiality concerns sharing the meeting experience without revealing sensitive information about other members.

Another relevant issue concerns how to protect confidentiality without unduly limiting self-expression. Members often come to groups with some fear of the other members. One common fear is that the other members will violate the member's right to privacy by revealing to others what is known about them and that these revelations might be detrimental to them. Thus, dealing with these fears is essential and needs to be addressed at future meetings so that all members have a common understanding of the issues of privacy and confidentiality.

A unique feature of support/self-help groups is peer interaction and sharing of experiences, which can create a common denominator or bonding among the group members. This interaction and sharing can be therapeutic and lead to self-awareness and self-determination. However, group pressure may sometimes escalate for members to reveal more and more intimate information about themselves. This openness may stimulate other group members to do the same. In either case, the member may feel coerced and yield control to the group by sharing very personal or sensitive information. Whether such information remains in the group or is communicated outside depends on the cooperation of co-members and how well they understand and respect the rules of privacy and confidentiality. The leader should also stress the need to conform to those rules; member's self-disclosures should not be discussed outside the group in private conversations.

A fundamental aspect of groups is participation by every group member. One task of the group leader is to de-emphasize his or her own role and stress the value of inter-member relations within the group. The quality of participation is not the issue. The mere act of participating may be more crucial; it can reduce the possibility of members dropping out. Initial participation often leads to additional and deeper self-disclosures. Therefore, a common characteristic of groups is that an environment is eventually created in which members feel safe and protected about the sharing of very personal information.

After a feeling of trust in the group is developed, members begin to disclose more and more of their lives as members participate more freely and openly with the group. As secret, private information is made more public, that "public self" is enlarged and members are less guarded in what they reveal about themselves. The implication of more shared information about ourselves is that the greater the feedback from the other members, the more therapeutic the results will be.

In this "public" atmosphere, it is important that the feelings of trust that the members have created not be violated, because there is always a risk in the self-disclosure of intimate information. It is important to emphasize that the group leaders and members not pay lip service to the issues of privacy and confidentiality. Respect for privacy and confidentiality should be a matter of practice; what is said within the group should remain there.

In conclusion, privacy and confidentiality are a basic requirement for all support groups. Groups should establish a policy on these issues and ensure that information which might personally identify a group member not be revealed or discussed outside the group.

The "Lupus Foundation of America, Inc. Support Group Manual," offers some good suggestions regarding confidentiality. These include, not releasing names, addresses or phone numbers of group members to anyone outside of the group. If the group chooses to have a roster of names and addresses, which are available to all group members, it should be made clear that no one is required to be on it and that all members who have a copy will not give this information to outsiders. This policy may be especially important to newcomers who have not shared their diagnosis with others, such as friends or employers. All group members should agree that any personal problems, such as divorce, emotional or financial problems that are discussed in the group not be shared outside of the group. It is appropriate and beneficial for the group to share information about community resources, which might be of benefit to the individual, but it is up to the individual to contact the resource. We should not contact the resource on behalf of a person or provide the name of an individual to a community resource unless we have been asked by the person to do so.

If any questions or situations concerning privacy and confidentiality arise which are not well defined or clearly understood by the group, these should be presented and resolved at a future meeting. If you have an interest or a need for further advice or suggestions about this subject or any issues surrounding the implementation, development or conduct of support groups, you should always feel free to contact me at:

Regards to all!

Pam Schechter
Littleprincess900[AT SIGN]hotmail.com