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Helping Parents Help Children Cope with Cancer in the Family
Cancer & Children continuing education social worker CEUs

Section 9
Sibling Support in Childhood Cancer

CEU Question 9 | CE Test | Table of Contents | Cancer
Social Worker CEUs, Psychologist CEs, Counselor CEUs, MFT CEUs

In this article we summarize the responses that siblings may have following the diagnosis of cancer in their brother or sister and highlight the nursing interventions that are effective in supporting siblings throughout the treatment period. The experience of the team in the bone marrow transplant unit at Great Ormond Street Hospital in London in setting up a sibling support group are described. 

Sibling responses
When a diagnosis of childhood cancer is made the whole family experiences feelings of concern, fear and separation anxiety (Gill 1987). While the introduction of family-centred care has recognised this, the impact on siblings has often been neglected (Ross-Alaolmolki et al 1995). The result is that family life changes and parents focus most of their time and energy on the sick child, which reduces the time they can allocate to attending and supporting other healthy siblings (Kramer and Moore 1983). Siblings are often left with relatives, friends or neighbours in order to continue as normal a life as possible, but this can lead to them feeling frightened and isolated from their sick brother or sister as they do not know what is happening to them (Stone 1993).

The siblings' responses to this situation are partially determined by individual temperament, life experiences and their culture (Iles 1979). Other factors contributing to the way in which well siblings cope with these family changes include: developmental age, the age of the sick brother/sister, the closeness of the relationship between the ill child and the healthy brother/sister, and the way in which the family respond to the situation (Faulkner et al 1995, Ross-Alaolmolki et al 1995).

Studies have shown that the siblings of children with cancer often receive little support, even though they have special needs. Many psychosocial problems have been identified including resentment, anger, anxiety, depression, fear of death, jealousy, guilt and isolation (Walker 1990).

Such responses require that the counselor cares for the family as a whole, developing skills in assessing each individual member of the family, therefore ensuring their physical and emotional needs are met (Harding 1996). Encouraging open and honest communication between family members aids explanation and addresses commonly occurring concerns, leading to a sense of trust. Counselors take on the role of educator, giving parents the appropriate information and use of resources to meet their well child's information needs themselves, thus helping to empower the parents (Heath 1996).

Parents remain the most important support for siblings, as the siblings need to know they are loved and cared for. Parents may need to be relieved at the bedside and encouraged to spend time at home or in activities with their well children (Harding 1996), enabling them to discuss any worries that their children may have. If the sibling is included in family discussions, he or she will gain more empathy for the sick child (Ovenden 1997).

Supporting coping
Coping is an important dimension to consider when a sibling has a brother or sister with cancer. Siblings have their own special needs which, if not met, could have long-lasting emotional or behavioural problems (Dominic 1993). Healthy siblings have identified factors that can help them cope.

To assist the siblings in coping the counselor can encourage the parents to talk honestly and openly, as knowledge about illness is important so that the sibling understands what is happening, and why. This can be achieved by using age and developmentally-appropriate information in the form of stories, videos, role play, dressing up or artwork. This is more appropriate for younger children as it encourages coping if they are unable to verbalize their feelings (Rollins 1990).

Involving the sibling in the care of the sick child and in visiting the hospital regularly, provides opportunities to share information. However, there are difficulties as visiting may be restricted during the time of isolation because of the risk of infection. But siblings can visit when their brother or sister has white cell recovery, which means they can then see, feel and touch him or her, as well as observe what he or she is experiencing.

Counselors can tackle each learning opportunity as it arises for the sibling under seven years of age (Craft 1993). This is essential because of the child's inability to use abstract thinking and to gain information from verbal or written explanations. Although some siblings are distressed by what they see in hospital, and may display anxious or angry behaviour, it is important to consider each family's needs individually. Such reactions can be prevented by preparing the siblings for hospital visits by showing them pictures of the ward and the equipment used (Havermans and Eiser 1994).

Group support
On the Bone Marrow Transplant Unit at Great Ormond Street hospital a decision was made to set up a sibling group for any sibling on the unit whose brother/sister was undergoing a transplant. The advantages of this sort of support for siblings is that they often feel left out and jealous of the attention the sick child receives, so these days are meant to be special to them. It allows them, through play, to express and work through their feelings, and they learn to mix with other children going through similar experiences (McEvoy et al 1985).

The disadvantage of a support group is that not all children benefit from working in a group, some of them do better on a one-to-one basis. Parents sometimes worry about what is being discussed in the group or what information will be given and think it may be too traumatic or that their child will be burdened by other siblings' problems. The sibling day needs to be planned well in advanced and incorporated into the ward off-duty as it may otherwise be difficult to take time out to spend with the siblings.

Setting up the group involved discussion with the ward sister, play specialist and colleagues. The issues discussed were:
• where to hold the group/what to include in the day
• gaining consent to take the children out of the hospital for insurance purposes
• when to hold the group -- in work time or at the weekend?
• funding
• planning letters to the parents outlining what the day involved.

It was decided that the group should be aimed at six- to 12-year-olds who had a sibling undergoing bone marrow transplant. It would be held on a Wednesday, in the ward playroom, from 10am to 4pm. The aims of the group were discussed and it was agreed that the day was for the siblings only, so that they were made to feel special and that they could enjoy activities that they wanted to do. In addition, it would enable these children to discuss their feelings, and give them time to ask questions about their siblings' diagnosis or treatment. The siblings could then visit the ward, meet some of the staff and experience some of the play activities that their brother/sister enjoyed.

The first sibling group was held had nine children participation. We met in the playroom, had drinks and biscuits, and made name badges. For the remainder of the time the children did various activities including plate painting, T-shirt painting, decorating picture frames/jewellery boxes, mudrock and play, focusing around the hospital environment. The group were taken out for lunch at McDonalds, which was very successful, and was followed by a trip to local park. When they got back to the ward the children watched a show from the hospital downs and had drinks and snacks.

This first sibling group went very well and all the children had an enjoyable day, as did the staff.. As we all work with sick children, we were not fully aware of the great energy that well children have, so the day was tiring, but we felt it had fulfilled our expectations. Subsequent meetings have been to the London Aquarium, London Zoo and an activity weekend is planned for the Summer 2002.

The sibling group does, of course, depend on the number of in-patients we have with siblings at any one time. For the following two groups there were not enough siblings on the bone marrow transplant unit therefore we included siblings from the haematology and oncology wards. We did not want to cancel the group for fear of upsetting the siblings who had expressed an interest. The next two groups were also successful. All the groups have interacted well, despite the fact that the children have not met before. The only problem that did arise was the matter of the age range. We had taken a group ranging from four to 12 years, because we felt we could not leave some younger siblings out. However, in the future we shall keep to an age range of six to 12 years, as having under six year olds was found to be impractical.

After the second meeting, the children were asked to fill out evaluation forms to find out whether they had enjoyed the group, what activities they would have liked included and whether they wanted to invite someone else. All the children had had a really enjoyable time and commented that they would like to invite best friends.

Our confidence in running the sibling group has grown. We are convinced that there is a need for such a group and that it serves as a valuable way of enabling the siblings to cope with the situation they find themselves in during the period of hospitalisation.

- Simms, Susan, Hewitt, Nicki & June Vevers; Sibling support in childhood cancer; Paediatric Nursing; Sep 2002; Vol. 14; Issue 7.

Coping With Advanced Cancer

- National Cancer Institute. (2014). Coping with Advanced Cancer. U.S. Department of Health and Human Services.

Personal Reflection Exercise #2
The preceding section contained information about sibling support in childhood cancer.  Write three case study examples regarding how you might use the content of this section in your practice.

Peer-Reviewed Journal Article References:
Howard Sharp, K. M., Russell, C., Keim, M., Barrera, M., Gilmer, M. J., Foster Akard, T., Compas, B. E., Fairclough, D. L., Davies, B., Hogan, N., Young-Saleme, T., Vannatta, K., & Gerhardt, C. A. (2018). Grief and growth in bereaved siblings: Interactions between different sources of social support. School Psychology Quarterly, 33(3), 363–371.

Katz, L. F., Fladeboe, K., Lavi, I., King, K., Kawamura, J., Friedman, D., Compas, B., Breiger, D., Lengua, L., Gurtovenko, K., & Stettler, N. (2018). Trajectories of marital, parent-child, and sibling conflict during pediatric cancer treatment. Health Psychology, 37(8), 736–745.

Pariseau, E. M., Chevalier, L., Muriel, A. C., & Long, K. A. (2020). Parental awareness of sibling adjustment: Perspectives of parents and siblings of children with cancer. Journal of Family Psychology, 34(6), 698–708.

Online Continuing Education QUESTION 9
What are the advantages of group support for siblings of children with cancer? Record the letter of the correct answer the CE Test

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