Participation in an unstructured supportive group as experienced by patients with advanced cancer disease: A preliminary study

To the Editor

Being diagnosed with cancer imposes a challenge to emotional adjustment, and many cancer patients have been found to suffer from existential distress [1], [2]. As existential distress does not reflect pathology, but is a condition that arises out of life circumstances, the suffering may respond well to an unstructured supportive interaction with caring providers [1].

At the Department of Oncology, Aarhus University Hospital in Denmark, patients included in a phase 1 study examining the effect of interleukin 21 on metastatic malignant melanoma and metastatic renal cell carcinoma [3] were invited to participate in an unstructured supportive group. The group is labeled “unstructured” as the group members meet without a therapeutic agenda and without a therapist to facilitate therapeutic processes. It is specific to this group that it has been initiated by patients themselves, and, rapidly after its establishment, patients decided that information about treatment and treatment results were delivered during group meetings. Hence, a physician is present during a part of each group session to inform patients about blood tests, clinical examinations, treatment side effects, and to answer questions from the patients. This procedure is timesaving for the physician and is apparently beneficial to the patients. In this letter, we describe the patients’ experiences of participation in the unstructured supportive group. The experiences were obtained in a group interview, which was conducted when the group had been running for approximately 3 months.

The supportive group

Group members were participating in a phase 1 study and were treated with escalating doses of interleukin 21. When a patient was referred to the experimental treatment with interleukin 21, the patient was introduced to the group and encouraged to participate. Thus, the members of the group were replaced continuously and were in different stages of their treatment. It was practice that the spouses of the patients participated in the group sessions. At the time of the interview, the group consisted of six patients and four spouses. Two patients were unmarried and living alone. The group members met two hours three times a week. At the time of the interview, no patients invited to participate had refused participation in the group.

The participants

All six members of the group were invited to participate in the interview. Five patients and three spouses participated. The sixth group member and his spouse were prevented from participation due to a physical examination. In this study, we focus on the patients’ perspectives. Patients were diagnosed with advanced malignant melanoma or renal cell carcinoma. The mean age of the patients was 61 years (range: 48–81 years). Four patients were men.

The group interview

To obtain data on the patients’ experiences of group participation, an interview guide consisting of the following four main topics was composed: 1) physical well-being after entering the group, 2) emotional well-being after entering the group, 3) social well-being after entering the group, and 4) interaction with hospital staff. The patients were informed about the interview by the second author and the first author conducted the interview. The participants had not met the interviewer previously. The interview took place at the Department of Oncology, Aarhus University Hospital.

Data analysis is described as an ad hoc meaning generation [4]. The interview was taped and transcribed and each author then carried out separate analyses of the text in order to identify the themes expressed by many of the patients. Agreement upon the major themes in the interview was reached by discussion. Four major topics emerged from the interview: shared fate, isolation, changes in attitudes to treatment and hospital staff, and self-efficacy. In the following, we present the main findings from the interview, and quotations from patients are presented to illustrate observed response trends.

Main findings

One of the themes most often referred to was a perception of shared fate among patients in the group. The patients described that they had bonded very strongly and were identifying with the other patients. The feeling of shared fate was described as associated with their common experiences with respect to treatment. All patients had previously been through unsuccessful treatments and were now undergoing the same experimental treatment. The patients described it as a “relief” to meet other patients who were undergoing the same treatment. Moreover, the patients described that the feeling of shared fate was associated with sharing feelings and thoughts with others who had been through the same. This increased intimacy with the other patients and helped to clarify the patients’ thoughts:

In this group, everyone has been through the same feelings. You understand each other immediately (Patient 2, male). Theme: shared fate

In relation to the strong bonding that patients felt to each other, many of the patients expressed concerns regarding resigning the group. They anticipated that they would feel distressed when the medical treatment was ended and no longer justified participation in the group:

When I am to resign the group, I will feel lonely. You no longer have the group with the same disease. I expect that I will have a depression. I am concerned about resigning the group. What I mean is that you are left to yourself with a disease that cannot be treated (Patient 1, male). Themes: isolation, resigning

In contrast to the strong relationships between group members, relations to healthy friends and relatives were described as troublesome. Patients described that interactions with healthy individuals increased feelings of isolation as healthy individuals could not identify with their feelings and thoughts. Furthermore, patients described how friends and relatives tended to see them as victims of the cancer disease, which appeared to be in contrast to the patients’ own self images, and – as a consequence – caused some frustration:

People say: “You are so brave and strong!” But I'm not stronger than anybody else. Everyone in this group is strong. One has to be strong when having a disease. People say that they feel sorry for you. In the group, no one feel sorry for you (Patient 3, female). Theme: isolation

Patients reported that participation in the group affected interactions with relatives and friends in a positive way. Worries about the cancer disease and the future were discussed in the group and the need to talk about these issues with friends and relatives was reduced.

Patients reported that participation in the group had changed their attitude to treatment and waiting time. Thus, patients described that group meetings had become a pivot to hospital visits and had made the waiting time, which often accompanies treatment, useful for social interaction and preparation to treatment:

Before, visits at the hospital were a negative experience, but suddenly one focuses on the social interactions with the other group members and the treatment is just something that comes with (Patient 1, male). Theme: Changed attitude to treatment

Patients reported that interactions with the physician and nurses had benefited from group participation. For instance, the patients agreed that they asked more questions after entering the group. Some patients reported that they were no longer afraid to ask questions, as the group was there to support them. It is documented that patients often forget much of what they are told by physicians and often misinterpret the information they are given [5]. Patients reported that the presence of other group members was beneficial in order to correct for possible misunderstandings when receiving information from the physician.

Patients and relatives reported that participation in the group increased available coping strategies. Patients described that confrontation with group members at later stages of the treatment could cause anxiety. However, the confrontation also increased their confidence in coping with the situation and with side effects from treatment:

You do not get frightened when feeling sick because you know from the other patients about the side effects. Then you lay in bed with fever and feel terrible, but you have heard that you'll feel better soon (Patient 2, male). Themes: self-efficacy, reassurance

Discussion

Several studies have revealed evidence that therapeutic group interventions can improve cancer patients’ emotional adjustment and quality of life [6–8]. Among the therapeutic processes that have been suggested as responsible for the change in patients’ quality of life are experiences of group coherence [9], reframing of negative health beliefs [10], emotional support, and the therapeutic relationship [11]. In this qualitative study we investigated patients’ experiences of participation in an unstructured supportive group, initiated by the patients themselves. We found that patients experienced a strong sense of group coherence, reflected in their experience of shared fate, which seemed to benefit the patients and supply them with high levels of emotional support. Patients dissociated themselves from group therapy and stated explicitly that the group meetings should not be labeled “group therapy”. However, their meetings included several therapeutic issues, e.g. a strong sense of group cohesion, establishment of supportive relationships with other group members, reframing of negative health beliefs, regular meetings and duration of sessions, and interactions with other patients at later stages of illness. Being confronted with group members at later disease stages and patients who did not respond to treatment may be beneficial. It may contribute to detoxify the patients’ possible fantasies about what will happen in case of no response to treatment, and it may be helpful to experience how patients handle later stages of disease [11].

The strong sense of group coherence, reflected in their experience of “shared fate”, seemed to be beneficial as it fulfilled patients’ needs of emotional support. However, it could be hypothesized that beliefs about a shared fate within the group might increase feelings of isolation and alienation towards friends and relatives outside the group. This aspect would differentiate the unstructured supportive group from traditional group interventions in which the purpose is not to replace existing relationships with relations to group members, but to practice how to establish and maintain relationships and transfer the acquired skills to everyday life [12]. On the other hand, research has shown that cancer patients not always want to talk about cancer [13], and as participation in the group fulfilled the patients’ needs to talk about the disease, they wish to talk to friends and relatives about normal life.

Many patients expressed concerns with respect to resigning from the group As these concerns are common in group therapies [12], therapists have to avoid that group members develop dependence of the group and the therapeutic relation. In traditional group therapy, the purpose is to gain insight into patterns of action and communication that are not beneficial to the patient and to learn new strategies. Thus, patients leaving group therapy will be better prepared to cope with future stressful situations and participation in the group has had both short- and long-term benefits. In future, patients’ concerns regarding ending participation in the group have to be taken into consideration and it has to be investigated whether the increased well-being is maintained after resigning from the group.

This study has several limitations. Fist, the participants in the group were rather homogeneous regarding age, disease stage, and educational background. As results from studies of group therapeutic agents have shown that homogeneous groups are the easiest to facilitate [11], the results of this study may not be generalized to less homogeneous groups. Second, the results are based on one group interview and the participants in the interview are those who initiated the group. The group may not have stabilized and the results must be considered as preliminary. Third, the participants did not report any negative consequences of their group membership, which may call for skepticism. It is possible that we hear the voices of the enthusiastic initiators, and more interviews with future groups have to be conducted and supplemented with individual interviews.

Taken together, the results of this preliminary study suggest that participation in an unstructured supportive group provide patients with high levels of emotional support and facilitate patient-physician communication. Despite the limitations of the study, we find it relevant to consider whether the experiences from this unstructured supportive group can be used to further develop the support group concept in other arrays of cancer treatments.