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

Method

New knowledge can be extracted from insights into the siblings' experiences of participating in a therapeutic support group using a descriptive qualitative approach with individual interviews (Taylor & Bogdan, 1984, 1998). The arrangement of the therapeutic support group meetings for the siblings in this study was in agreement with the focus group technique. A moderator guides the conversation group. The moderator must have experience in the subject matter, including knowledge about normal child and adolescence development, and be flexible, listen actively, and provide neutral answers to group questions (Morgan, 1993).

The focus group method has been practiced and proven to work well in the treatment of individuals with emotional needs (for example, children in rehabilitation clinics for substance abuse) (Agar & MacDonald, 1995) and professional guidance for nurses in intensive care units (Lantz & Severinsson, 2001). In a study by Woodgate (2006), focus groups were used as a method to give siblings an opportunity to talk about their feelings and help them through their brother's or sister's childhood cancer.

Setting and Participants

Siblings 8 to 19 years of age of a child who had been diagnosed with cancer at the Department of Pediatric Oncology, Queen Silvia Children's Hospital in Sweden, were invited to take part in the study. Siblings of children who had died from cancer were also invited to take part. Follow-up interviews after the series of group meetings aimed to extract information directly from the participating siblings about their experiences (Docherty & Sandelowski, 1999; Mishler, 1986; Nolbris et al. 2007; Patton 2002; Scott-Findlay & Chalmers, 2001). The individuals were selected for the study based on different diagnoses of cancer, treatment phases, and whether the sick child had died. Participants had to be able to come to the hospital and speak Swedish. Each group needed to include both boys and girls. The time from diagnosis needed to be two to seven months. For siblings who had lost a brother or sister, six months must have elapsed.

Two nurses from the pediatric oncology unit asked 25 families about participating in the study. Of these, 14 families declined participation (13 siblings, 3 parents). Some siblings were unable to participate due to the distance to the hospital, and others were afraid of what would happen in the group or to them. Some parents did not think it would be good for their child. The siblings and legal guardians were informed about the study verbally and in writing. They were informed that participation was voluntary and could be stopped at any time, and that confidentiality was assured. In total, 15 siblings from 11 families, with 5 boys and 10 girls 8 to 19 years of age gave their informed consent to participate.

The individuals in the study were assigned to one of four therapy groups. Each group had one pair of siblings from the same family (see Table 1). Group 1 consisted of children who had lost their brother or sister to cancer, and Groups 2 through 4 consisted of siblings of children who were receiving treatment for cancer and assigned to a group based on their siblings' cancer diagnosis. There were no other criteria for group assignment. Two groups ended up smaller than planned when two participants declined participation just before the meeting started.

Procedure

The study was carried out between January 2006 and April 2007, and was approved by the Regional Ethics Review Board in Göteborg. For practical reasons, two groups met in a room in the play therapy department at the hospital, and the other two groups met in a conference room at the pediatric oncology unit. The same moderator led all the sibling support groups. The moderator (first author) has a long history of working with support groups for children and adolescents. The participants in the four groups met three times. Each session lasted one-and-a-half hours, and all sessions were recorded on audio tape. The participants and the moderator sat around a table so everyone would feel he or she was in the center, not singled out and without too much focus on him or her.

The support groups started with a conversation circle in which everyone was able to express what he or she was experiencing at the time. Everyone was allowed to say something or answer a question without being interrupted. The moderator divided the time evenly between the participants, and let everyone have his or her turn in order. The siblings then introduced themselves to each other and then to the group. The participants wrote down their expectations of the first and future meetings. Siblings brought a photograph of their brother or sister (in treatment or deceased) and used it at the first meeting to help them talk openly about their brother or sister. A photo-language technique, using pictures to communicate in groups, has been described earlier (Akeret, 2000; Lepp, Zorn, Duffy, & Dickson, 2003). When unlike motives of pictures are placed on a table or floor, the participants can choose one or more and tell about the situation. These images provide an avenue for sharing feelings, thoughts, and experiences, connecting different events in the photograph with their story telling.

At the second and third group meetings, the moderator asked how the siblings had been since their last meeting and if there was anything they would like to discuss further. At the second group meeting, siblings also selected pictures from over 100 different settings to capture a feeling or view of a memory they had encountered in their situation. Pictures in different settings have been used as a therapy tool for children and adolescents before, and they have helped reduce worry and depression levels, improve self-esteem, increase social activity, and raise expectations of health (Reynolds, Nabors, & Quinlan 2000).

At the third group meeting, the siblings were asked to paint a picture using watercolors in three steps: background, setting, and finally, adding a few words. While the colors were drying, the siblings talked about what they had painted. When the pictures were finished, the siblings put them up on the wall and described their pictures to the group. Painting as a way to describe feelings has been assessed before (Rollins, 1990; Rollins & Riccio, 2002). Paintings in a group setting have been shown to release emotions of melancholy and aggravation, as well as facilitate the expression of emotions when a child is grieving over the death of a parent or grandparent (Nabors et al., 2004).

All support group meetings ended with the moderator reiterating what had been said and the participants being given the chance to express what they had experienced during their meeting. Time was set aside after each support group meeting for individual consultations for the participants if needed. If any sibling felt the support group meetings or evaluation interviews were too difficult or uncomfortable, the opportunity to see a social worker or psychologist at the hospital was offered. None of the siblings requested support from the social worker/psychologist or moderator after the conversational support group or the evaluation interview.

Data Collection

The siblings' experiences of participating in the support groups were evaluated through individual interviews two weeks after the last group meeting in the room that had been used for the meetings of Groups 1 and 2. For Groups 3 and 4, in which participants were further from the hospital, telephone interviews were conducted. The interviews consisted of 14 questions (see Table 2), with additional follow-up questions ("How did you feel then?" "Can you tell more?" "What were you thinking?"). The interviews lasted 15 to 30 minutes. All interviews were recorded on audiotape and transcribed verbatim. Approximately two weeks after the individual interviews, the moderator telephoned the siblings to see how they were doing and if they had any thoughts or wanted to add anything. Two experienced nurses who had not been involved in the therapeutic support group conducted the interviews, so the siblings would feel free to express their opinions about the support meetings.

Data Analysis

The research team evaluated the follow-up interviews with the siblings using qualitative content analysis to draw a systematic conclusion from the words expressed in the text and extract the message (Krippendorff 2004). The interview text was analyzed by three of the authors, first individually and then together in discussion, until a consensus was reached.

The interview text, which was transcribed verbatim, were read to get a feel as a whole and help find the core meaning of what was said. Units of meaning were identified from the text as suitable representations corresponding to the aim. The text was condensed, and representative units were coded with a designation and sorted into subcategories and categories (see Table 3). For the purpose of trustworthiness, the analysis process is described according to each step indicated by the method, with example quotations (Cutcliffe & McKenna 1999; Krippendorff, 2004).

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