Tokai University School of Health Sciences, Isehara, Japan

Talk given at the parent meeting at the SIOP in Yokohama, October 1998

In Japan, there are at least five formal support groups for families who have lost a child (Children's Cancer Association of Japan, 1998). With the exception of the group that I run, all groups are conducted on a drop-in basis, and do not limit the number of participants nor select based on the cause of death. Therefore, what kind of people attend, how many attend, and what kind of topic or topics they will discuss are flexible in these support groups. The advantage of this style is that people can attend when they need to.  

Since my previous research indicated that the mothers usually develop a special and very close relationship with their child during the child's illness, I thought it was important to have a support group specifically for mothers who lost a child to cancer. Since I also hoped the experiences in the support group would provide an opportunity for development for the participants, I felt a short term intensive style would be appropriate. I have never felt that my group is better than others. Which style is more appropriate depends on the participants. This is a point on which I sincerely hope I will not be misunderstood. I consider it to be extremely valuable to have many types of support groups available to grieving mothers. Only in such a situation can these mothers chose what is most appropriate to their needs.

In 1996, I started a short-term intensive support group for mothers who had lost a child to cancer within a year. The mothers who participated in these group were drawn from the membership of the Children's Cancer Association of Japan, which also provided facilities for holding the meetings. The objective of these support groups is not only to share the mothers' feelings caused by the loss of the child (such as sadness, anger, and guilt), but also to focus on and discuss their various problems with other members of the support group. This is very hard work for these women, but it presents an opportunity for them to develop. However, I have only three years' experience in running this support group and I am still modifying the process  through trial and error. I should say that what I present today is not the completed version - it is undergoing continuous revision. Also, so far the participants have been limited to mothers, but I intend to someday include the whole family, including fathers and siblings. In this preparatory phase for this expansion, I am constructing a model for managing this support group.

Today, I will present the grieving process of mothers, how I manage this support group, and its particular features.

I The grieving process of mothers

First of all, I would like to review what my research has found to be the main emotional difficulties these mothers experience, in order to clarify the therapeutic objectives of the support group.

There are at least four main causes of depression: 1) grief over losing the child, 2) concern about the deceased child, 3) a feeling that they cannot communicate with the child, and 4) painful memories. I will briefly review each of these. Many mothers refer to the experience of caring for the child during the illness as "a battle with the cancer". Through this urgent situation, mothers develop a special and close relationship with their child. Losing such a special child is particularly difficult for the mothers. Since the mothers do everything the child needs during the illness, many mothers are afraid that the deceased child will not be all right without their help. Along with this, the mothers also feel sad because there is nothing which they can do for the child. This sense that they can no longer interact with the child is greatly disturbing. Finally, the memories of the child when he or she was in pain are often a source of the mother's depression. One mother told me, "I recall scenes such as my daughter's painful face when she died. I try to forget them, but I can't. Instead I try to remember what happened next." If the mothers cannot see the child in their dreams except when he or she is in pain, it also disturbing to them. The mother's depression becomes wrapped around these problems. In addition, mothers who are deeply depressed cannot perceive the sadness of other family members. One mothers told me, "Both my husband and the other kids are all right. I feel that I have been separated from them." In the same way, many of these mothers felt alone in their family, which intensified their depression.

Losing the child triggers feelings of anger which the mothers do not know what to do with. It is not unusual for this anger to be directed toward themselves and takes the form of guilty feelings. Every mother has feelings of guilt and regret about the care which they provided their child, their acceptance of the terminal nature of the illness before the child actually died, and/or what they see as the possible cause of the child's illness. Even when they acknowledge that they had no power to affect the situation, if confronted with the death of their child, people tend to negatively evaluate what they had done. Even mothers who told others not to think that way in the support group were often unable to control their own feelings of guilt and regret.

These mothers made a concentrated effort to protect the child from any pain during the illness. This is not easy work and it became a reason to live or a self-identity for them. Therefore, losing the child meant losing themselves as well. One mother told me, "What should I do from now on? I lost the meaning of my life." This reaction appeared in many mothers. On the other hand, the same mother also eventually recognised that, "I have to live longer for the deceased child." This fluctuation between a decreased desire to live and a renewed recognition of the value of living would often be related to the mother's level of depression.  

d) Difficulty in coping with others

Many mothers feel it is difficult to interact with others. It is very difficult for depressed mothers to go outside. One mother told me, "Others told me 'I'm glad to see that you look all right.' Actually, I am not all right, but I do not have the energy to tell them. So I feel bothered when I have to deal with friends and family members."

II Management of the Support Group

Let me outline the process involved in running this support group. First, I interview all the participants individually before the support group begins to learn about their experiences during the child's illness and after the child died. Based on these interviews, I evaluate their grieving processes and problems that the various participants are dealing with currently and decide what topics to discuss in the support group. In each support group meeting, I ask the participants (4 to 6 mothers) what they have experienced during the past week because I would like to know the effect of the previous week's meeting and to see if someone has an urgent problem which we should discuss. Then I introduce the topic which we will discuss that day. At the end of the meeting, I ask everybody about the feelings they had during the meeting, and I inform them of the topic they will discuss next week and ask them to write a report about it. It is difficult for many mothers to write this report. If they cannot write it, I ask them to at least think about it. In this way I give them the opportunity to consider the topic carefully.

Three months after a support group session ends, I interview each participant and ask them to evaluate the support group and how they have changed. Six months and a year after the support group session, a follow-up support group meeting is held. I ask the participants what they experienced during the last 6 months and if they have experienced changes in themselves and the people around them. At the end of this support group meeting, participants discuss their future goals.

The central mechanism of these support groups is a careful analysis of what the participants' say. I believe that kind of analysis is important for finding the change of the each participant and to know what kind of support they need. It is also necessary to closely follow their interactions and development as a group. I analyse all the transcribed data from the tape recordings of all support group meetings, as well as each participant's interviews before and after the support group sessions. Of course, I ask the participants if I can record our interviews and discussions. All proper nouns are changed to protect the anonymity of the participants, their families, friends, and health professionals when the tapes are transcribed. Also, I am careful to keep this data separate from the participants' private data. In addition, a copy of the each participant's data is given to them to read. Since they are often not very sensitive to their own changes and developments, my objective is to get them recognise these changes by reading this material. In doing so, they usually become more confident that they can overcome problems by themselves from now on.

III The features of the support group

This support group has three features, which are the establishment of a consistent membership, a short-term intensive format, and topic focused discussions. When these features are taken together, they provide an atmosphere in which the participants are able to talk honestly and deeply.

The participants are limited to four to six mothers who have lost a child to cancer. (I run three groups each year) During the 8-week session, who participates is fixed and cannot be interchanged. This creates an environment in which the participants' privacy is easily protected, allowing them to open up. Mothers who have cared for a child with similar illnesses (cancer) and have experienced the similar period after the death of the child often have similar emotions and problems. The more similar their situations are, the more they can express and compare them with the others. This helps them to understand their own situation more objectively.

Also, since it makes it easier for them to be sympathetic with others, they feel less isolated by their own situations. There are many complicated emotions that occur during the grieving process, including emotions that the mothers feel they should not have, such as anger and hate toward their husband and other children. Many mothers try to shut up or hide these feelings, but in the long run it seems to be beneficial to have a way to express these emotions and face the reason why they feel this way. For example, Ms. A said, "Since I feel sorry for the deceased child, I glorify my memories of her and reject my other child. I am bothered by the strength of the other child's energy in front of me." Several other participants agreed and expressed their feelings on the subject. However, Ms. B told of her experience, "I had a similar feeling, but then one day I coincidentally found that my other child kept his brother's photo with him. Then I realised how sad he really was. When we lose our composure, we cannot see how hurt the siblings are." Each mother started to rethink her own situation and talk about it. After thinking this topic over, Ms. A said in the last meeting of the session, "I thought I need to be more aware of the signals which the other children are sending me. I would like to tell them I am sorry."

 Usually, many participants become more able to open up from the third week and the interaction between participants becomes more active. One reason is that during the first and second week participants express their guilt and regret when they talk about their experience caring for the child and it builds sympathy within the group. Another reason is participants are asked to bring belongings of the deceased child and talk about their feeling toward the child in the second week. Seeing the photos and hearing about the child makes it easy for the other participants to imagine the child. After these encounters, many mothers are able to be more open in the group.

In this support group, the participants meet once a week for one and half hour over an eight week period because I believe this format is good for concentrating on the topics. Also, we are able to continue the discussions through the 8-week period. Because of the intensive format, participants are compelled to think about the topics even when they are not at the support group meetings. One participant told me, "I feel that Wednesday (the day of the support group meeting) is the centre of my life. I am tired on Thursdays, and become a little bit more energetic on Friday. On weekends, I pretend to be cheerful for my family. Then by Tuesday I am looking forward to seeing the others."  On the other hand, the reason for finishing the support group within 8 weeks is that I expect each participant to be better able to face and resolve their problems once they have experienced them through the support group. Actually, the interaction support between participants is designed to continue after the support group session ends. Of course, there are some who cannot open up or face their problems. In these cases, I suggest they come back and try the next support group session.

The process of selecting and preparing for the weekly topic is the most unusual feature of this support group. I think that the mothers who have lost a child to cancer cannot be healed by forcing them to move in a direction which the healer believes is right. Through previous research, I have found that by talking about their experiences and emotions, mothers develop the capability to organise their experiences and decide what to do next. However, when people are confronted with a very difficult situation that they feel they are not able to control, they have to understand what happened first. For this reason, it is important for the mothers to discuss a predetermined topic, which allows them to create a certain amount of distance from their own experiences. During the discussions, I stress the value of relating their experiences and emotions because this allows the participants a chance to rethink them. I also hope they will see there are many coping strategies and will be able to distinguish their own perspectives and biases. Since the number of participants is small and constant, they are better able to understand each other, do not have to be too careful with each other, and are able to open up more, and this allows for better interaction. I try to organise the discussion, clarify each participant’s ideas, and occasionally introduce a contrary idea when it seems they are not able to express their honest opinion or everybody is expressing the same idea. However, I do not try to pursue my own conclusions. Ultimately, what I value the most is the interaction among the participants.

This list indicates which topics are frequently discussed. Through rethinking their own experience by means of each week's discussion, the participants become able to remember not only the negative memories of the child, but also the positive ones. This is a hard work, but it is also the healing process and helps mothers to accept the meaning of the life and death of their child and reorganise their relationship to the child.

IV Conclusion

These mothers are often overwhelmed by many complicated problems during the grieving process. They have to face each problem and resolve them one by one in order to rebuild their relationship with the deceased child. The main role of a support group is to strengthen and mediate this process. I have always believed it is very important to remember and confront directly the experiences the mothers had during their child's illness, even if it is very difficult to do so. However, when I started the support group, I was concerned that this process may possibly cause more damage than help. Nevertheless, in the feedback and follow up process, I have found that the participants have often been able to overcome their depression and have expressed that they discovered many ways of seeing and thinking about their experiences, were able to see their situation more objectively, and could re-evaluate themselves in a better light.  Based on these results, I became more confident about the direction in which I was developing this support group.