The Experience of Therapeutic Support Groups by Siblings of Children with Cancer

Margaretha Nolbris, PhDc, MSc, RN; Jonas Abrahamsson, MD, PhD; Anna-Lena Hellström, PhD, RN; Lisa Olofsson, MSc, RN; Karin Enskär, PhD, RN

Disclosures

Pediatr Nurs. 2010;36(6):298-304. 

In This Article

Results

The interview text of the 15 siblings was analyzed after the siblings had participated in one of the four support groups. The text was divided into 10 subcategories, which constituted three categories (see Table 3). The categories and subcategories are described below.

Belonging to a Group

Talking about Your Situation. The siblings welcomed the opportunity to express their thoughts in words and of being able to say how they felt from their own perspective. They also thought it felt good to talk about their brother or sister and for their story to be acknowledged. The older participants were better able to express their thoughts and feelings in words, which made it easier for the younger participants to put words to their feelings. "To not feel so lonely. It was good to be able to talk, seriously good." "The older participants were better with words and sentences." "They said what I wanted to say, and that was good."

The siblings wished they had been in a sibling support group earlier to talk about their feelings: "One thing I regret is that in the beginning, when my brother passed away, I kept all my emotions inside." "When it really should have been talked about much sooner."

It Helped to Hear what Others were Feeling. It was important to hear how the other siblings in the group had felt when they told their story. Above all, they felt it was very important to know one can experience happiness, and you can and are allowed to be happy even though you are going through a difficult time. "It was good to hear how others felt." "Even though he died, you don't have to be sad your whole life; you can be happy."

Recognizing Yourself in what Others were Saying. When they met the other siblings in the group, there was a feeling of belonging. Friends and classmates are important, but they do not understand how you feel even though you sometimes told them the situation. They also thought children getting cancer was so rare that it is not something you talk about with anyone.

The brothers and sisters discovered they were not alone in their thoughts and emotions because there were others in the same situation. "Meet other siblings because the ones you know don't realize, they haven't gone through these feelings." "It helped me to understand that there were others in the same situation." "There are other people who feel like I do and who are in my situation, that was a relief." "And also fun."

Finding the Inner Strength to Carry on. The siblings who were listening to the other siblings' stories expressed the individual who told the story was very special to the sick brother or sister and his or her family. The life-changing events expressed showed insight and inner strength conveyed to others during support conversations. After each session in the group, it became easier for the siblings to gain some insight into their own feelings and understand their role with the sick child. The siblings gained support and strength from the sense of community and from the understanding of others. "Hearing the statements from the others was good, for example, laughter and joy." "It's easier to be with N now after, easier to understand, know how to deal with it." "It's such a relief that there is actually someone who understands. You can tell your friends, but they can never say, 'I understand.'"

Important as a Member of the Group

Getting to know Each Other. To take the focus off the individual, the siblings presented each other to the group, which most of them thought was nice. They got to know each other through listening and reasoning. "It's always easier to talk about someone else." "It's about the other person, although it was me talking."

Allowed to Talk or Remain Quiet. None of the siblings felt forced to say anything when it was his or her turn. If the siblings did not want to say anything, they did not have to, and if they wanted to tell a story, they could. "I didn't feel stressed, and I got to say what I wanted."

It was an Advantage that the Group Members were of Different Ages. The groups consisted of siblings of different ages. Some siblings were young, but the participants did not consider this to be a problem. The difference in ages gave the siblings an opportunity to see different ways of experiencing and reacting to their situation. This was very educational for the group. "It doesn't depend on how old you look." "When somebody has experienced something like this, you act older." "I think the ages in the group were good; you noticed that everybody is thinking differently, yet still the same. That was good."

Therapeutic Support Helped Siblings Recall and Understand Their Memories

The tools Used gave a Form to the Feelings and Brought Back Memories. Selecting a photo, the painting, and choosing a picture were all viewed as helpful. Regarding selecting a photo, siblings thought it was easy yet difficult to choose a photo. Seeing and showing pictures of their brother or sister made it easier to understand and give an actual form to the feelings. "You didn't know whether to take a photo of him when he was sick or not sick, but I thought I'd take one when he was happy." "You know what they look like, so it's much easier."

About the painting, siblings described their different feelings using many colors. They explained why they had chosen a particular color. They thought painting with watercolors was fun, and it was never a problem to choose the setting for their paintings. The last step of their watercolor project was to relate one or more words to what had been painted. This allowed the siblings to write about their emotions (for example, expressing their love and worries through their painting). "A red background. Well, I thought of a color for love, and it's also my favorite color. I thought of the love for N and the love for those close and dear to me too. " "It was pretty fun to paint with watercolors. I knew what I should paint – when he and I played football. We did it when he was healthy or felt well; that memory was the strongest." "There [were] anxiety and feelings."

When choosing a picture, siblings said the settings of the pictures reminded them of what they had shared and what their brother or sister liked. They felt it was very meaningful to remember those special times. "I saw my pictures almost immediately: Ahlgren's candy cars [small, marshmallow, car-shaped candy available in Sweden] that he liked to eat and then a dog because he had just picked out a puppy." "Those were the two that were closest to me or to him and described him most. Ah, maybe I would have liked one of those pictures where both siblings were hugging each other." "Like the love between a sister and brother."

It was Good to End the Meetings with Closure. The conclusion helped the siblings, who deduced what had been said and helped them develop a structure to remember what they had talked about in the group. The conclusion helped them put some thought into it afterwards and to reflect on what they had been through. It also helped them tell their parents if they wanted to do so after they arrived home. It also felt good to hear the other group members' closure. "Suddenly there is nothing. It's not even worth it if you don't think about it a little after it has happened." "Good, then you know you didn't miss anything and not until then can you start your next project."

It was good to continue the discussions from the previous meeting. At the second and third meetings, the siblings were asked if they had thought about anything that had been discussed at the previous meeting or if they had not finished some of their reflections. The siblings thought it felt good to have the opportunity to talk if they needed it and the ability to compare what they had experienced at the other meetings. "It was very good to do that, to compare how it was with other meetings. I thought that was very good."

Discussion

This study looked at descriptions by 15 siblings in a therapeutic support group when their brother or sister was going through treatment or they had lost their brother or sister to cancer. A qualitative descriptive method was used, with the siblings expressing their own experiences of therapeutic support groups (Taylor & Bogdan, 1984; 1998). These were evaluated with individual structured interviews (see Table 2). The therapeutic support group arrangement can be compared with Morgan's (1993) focus group method, which used a conversation leader who was knowledgeable on the subject. The moderator who held the group meetings had a clinical background working with children and teenagers, which added to the credibility of the study. Surprisingly, as many as 14 families declined to participate in the study when asked. Being included in a study might feel threatening in this vulnerable situation. A few groups became smaller than planned for different reasons. A few siblings and/or parents refused to participate, and a few siblings regretted having given their informed consent just before the meeting started. One thing that could have been done differently would have been to allow more time between the diagnosis/death of a child and the initial group meeting. Because patients are in shock immediately following the diagnosis of cancer or the death of a child, they may find it difficult and even overwhelming to decide on participation in a research study. This may be even more pronounced in a study regarding siblings because parents may worry on how they will cope.

In this study of siblings' experiences of a therapeutic support group, only the siblings participated. It is significant that the information is from the participants themselves and not from proxies, such as parents, (Nabors et al., 2004).

Belonging to a Group

Being a sibling of a child with cancer has been described as a distressing situation with feelings of anxiety and anger (Dellve, Cernerud, & Hallberg, 2000; Lehna, 1998), as well as fear of a relapse and possible death of the brother or sister (Barrera et al., 2002; Koch-Hatten, 1986; Lehna, 1998; Martinsson, Gilliss, Colaizzo, Freeman, & Bossart, 1990; Walker, 1988). The distress can lead to worries, loneliness, and negative behavior (Hamama, Ronen, & Feigin, 2000). A negative effect on quality of life has also been described (Houtzager, Grootenhuis, Caron, & Last, 2004; Houtzager, Grootenhuis, Hoekstra-Weebers, Caron, & Last, 2003). In this study, the siblings expressed the value of belonging to a group of other siblings. Through the group, the siblings were able to meet other siblings who shared the same experiences and who were going through the same things or were dealing with a brother or sister who was being treated for or had died from cancer.

In the groups, the siblings were able to tell their own stories and listen to others who had gone through the same events, and found it was reassuring they were not alone. According to Murray (1998), children who have a sibling with cancer need someone to talk to, someone who understands, and a room where they can speak freely without having to defend what they express. In their everyday life, siblings often keep their thoughts and emotions to themselves because they did not have anyone to share them with (Cairns, Clark, Smith, & Lansky, 1979). For the younger children in this study, it made particular sense to hear the older siblings' stories. It helped them understand and express themselves better. Sloper (2000) reported siblings who were able to express their own emotions achieved greater recognition and self-esteem. Sharing in the others' stories helped siblings put words to difficult and conflicting emotions. Several authors have also showed it is very important for siblings to be able to express their own thoughts (Murray, 1998, 2002; Scott-Findlay & Chalmers, 2001; Sloper, 2000; Woodgate, 2001). The siblings in this study were able to recognize themselves in the other siblings' stories. They shared the same emotions and behavior, and felt a connection. After meeting other siblings in the same situation, the siblings' social competence increased, and their feeling of isolation decreased. This has also been described by Creed and colleagues (2001) and Sidhu et al., (2006). Being acknowledged by the group gave the siblings strength to carry on.

Important as a Member of a Group

In this study, the siblings felt they were important members of the group. Some even described the group as the only place where they felt comfortable and fitted in with their experiences. The support groups served a purpose for the participating siblings because siblings often feel forgotten and unimportant (Havermans & Eiser 1994; Iles, 1979; Murray 2002; Rollins 1990; Sloper 2000). In the groups, the siblings felt it was permissible to talk and remain quiet. If they had something to say, they felt they could speak without being interrupted. The groups included a range of ages, which the siblings appreciated. The siblings described themselves as comfortable in the group and as being able to tell their own story, including happiness and laughter, and they realized no one expected them to be sad all the time. According to the attachment theory by Ainsworth, 1991, a special attachment, which has nothing to do with age, appears to form rapidly in the sense of group membership. The siblings also gained a better understanding of their sick brother or sister and how they should act when they were together. The siblings developed a certain comfort level even though they did not know each other before, and they were able to give each other support and reassurance.

It has been reported elsewhere that siblings of children with cancer ask for support from several sources, such as from their family, staff, and friends (Freeman et al. 2003; Havermans & Eiser, 1994; Murray, 1998, 2002; Sloper 2000; von Essen & Enskär, 2003). Further, parents of children with cancer hardly recognize the siblings' needs for support (Ballard, 2004). Knowing the very positive effects pointed out by the siblings in this study, it is surprising that siblings are rarely offered these kinds of therapeutic support groups. In this study, the participants said they wished they had been offered the opportunity to participate in a group earlier, and none of the siblings regretted his or her participation. All siblings who started in the groups made all the sessions.

Children and youths who have participated in support groups have reduced their stress and anxiety and gained a preparedness to deal with their emotional reactions (Williams, Chaloner, Bean, & Tyler 1998). Houtzager et al. (2001) found siblings of children with cancer experience less anxiety after participating in a support group. These results are congruent with those of several support groups for bereaved parents of children who have died from cancer (DeCinque et al., 2006). The same method (focus group-oriented supervision) has also been used for nurses in intensive care and been proven to increase the insight of the nurses into the needs of the family members and their own role (Lantz & Severinsson, 2001).

Therapeutic Support Helped Siblings Recall and Understand Their Memories

The technique of ending each meeting with closure helped the siblings develop a structure to remember what they had talked about, put some thought into it afterwards, reflect on it, and helped them tell their parents if they wanted to know. It also allowed them to continue discussions from the previous meeting.

In the process of using different "tools," the siblings had to choose photographs and setting pictures to see, show, and paint, and this helped them understand and express their emotions and resurfaced memories. Words can sometimes be hard to find or may feel intimidating, so these tools helped them dare to express what they were going through. The pictures and art in this study offered support to the siblings, and helped them reflect on and bring out both the negative and the positive emotions of their memories, something that has previously proven to be beneficial to siblings (Akeret, 2000; Boronska, 2008; Lepp et al., 2003; Nabors et al., 2004; Rollins, 1990; Rollins & Riccio, 2002).

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