Partner With Us
Why join CCI?

CCI (formerly ICCCPO) works to build a world-wide community of childhood cancer organizations representing families of children with cancer and childhood cancer survivor groups. We share information and experience in order to improve access to the best possible treatment and care for children with cancer everywhere in the world. Complete the form to learn more.

Please leave this field empty.

Navigating Sibling Relationships

Guidelines for Assistance to Siblings of Children with Cancer

by SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, (1999)

 

During the course of their brother’s or sister’s illness, siblings feel left out and suffer. Without any ill intention on the part of already overburdened and concerned parents, siblings are often inadvertently ignored. At the time of the initial diagnosis, overwhelmed by their concerns for the sick child, parents must give their attention to the child who is ill and in need of immediate medical help. The health care team as well focuses its immediate attention on the ill child.

This is the seventh official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, instituted in 1991. This document develops an additional topic discussed and approved by the S1OP Committee, “Assistance to siblings of children with cancer. it is addressed to the pediatric oncology community and outlines general principles for helping siblings throughout phases of treatment: at diagnosis, during treatment, in the event of relapse, curing bone marrow transplantation, after completion of therapy, during palliative care and the terminal phase.

Published in: Med. Pediatr. Oncol. 33:395-398, 1999. © 1999 Wiley-Liss, Inc.
Key words: siblings; childhood cancer; psychosocial support

Introduction

During the course of their brother’s or sister’s illness, siblings feel left out and suffer. Without any ill intention on the part of already overburdened and concerned parents, siblings are often inadvertently ignored. At the time of the initial diagnosis, overwhelmed by their concerns for the sick child, parents must give their attention to the child who is ill and in need of immediate medical help. The health care team as well focuses its immediate attention on the ill child.

During this time of crisis, when the parents are already giving their almost undivided attention to the sick child. How does one bring the needs of the siblings to parents’ attention? How does one encourage and help the family to return to as normal a family life as possible as soon as possible? There are general principles for helping take care of the needs of siblings that apply throughout the treatment process, and there are principles specific to each phase of treatment.

General Guidelines

General principles that apply to the care of siblings throughout the treatment process can be divided into rather discrete categories.
Feelings of isolation:

From the time of diagnosis, siblings often feel isolated and abandoned because:

  • parents perforce are frequently at the hospital and gone from home;
  • siblings are left in the care of others, with the immediate family not there;
  • parents do not have as much time or energy left to be mindful of the siblings, because of the time- and attention-consuming needs of the ill child.

Recommendation: Members of the health care team can speak with parents about the need to support the siblings, despite all of the other burdens that go into caring for the ill child. They can encourage the parents to share and generate suggestions regarding how to involve the siblings from the very beginning.

Need to communicate with and listen to siblings:

As an instinctively human reaction, in the absence of factual information, siblings tend to fear the worst, even for their own health. When parents and members of the health care team attempt in good faith to shield the siblings from knowledge about the illness, such well intentioned hiding of the truth often drives the siblings to fear even worse possibilities, and can lead to feelings of isolation, guilt, and resentment.

Recommendation:

Parents should be encouraged to:

  • review the siblings’ own day and their own interests;
  • include the siblings in discussions of the diagnosis early on, and keep the siblings informed in an age appropriate manner, giving them the choice of how fully and actively they wish to participate;
  • continue to update the siblings as treatment issues change;
  • bring the siblings into the hospital to see their brother or sister and to hear about medical procedures if they choose to do so; in all cases, whether or not and how much to talk about the illness should remain the choice of the sibling, and depending on the patient’ s age should be done with the patient’ s consent;
  • whenever possible, continue to emphasize the positive and optimistic side of treatment; keep hope alive.

Developmental issues:

Children remain children. Communication about diagnosis and treatment issues should take into account the siblings’ social, emotional, and cognitive capacity. As the siblings grow during and after the treatment, both their curiosity about the illness and their capacity to understand grow accordingly. Issues relative to the illness should continue to be addressed over time.
Notable issues for all siblings, to be discussed in an age-dependent manner, are:

o what to expect both for themselves and for their brother or sister now versus after physical changes occur, or changes in their relationships with their brother, sister, and parents, and what they can do to help during these transitions;
o what adverse effects the siblings might have on the patient (for example, “spreading germs,” e.g., a cold, or picking fights).
Notable age-dependent behaviors exhibited by many siblings and suggested as possible topics for discussion by parents are:

  • feelings of guilt for not being sick themselves;
  • feelings of guilt for causing the illness;
  • fears that they too might become sick;
  • school problems/school avoidance/other changes in relationship with school and teachers
  • somatic complaints
  • “acting out” in order to get attention;
  • long-term loss of childhood;
  • loss of normal parent time and support;
  • loss of a playmate;
  • loss of family cohesion;
  • changes in normal family routines, holidays;
  • additional chores within the family because of the patient’s inability to share in them; arguments when the patient is unwilling to share chores;
  • illness-related financial bosses in the family;
  • anger, sadness;
  • sometimes-intrusive and difficult-to-answer questions from friends and neighbors;
  • uncertainty about the future

Helping one another: One of the great lessons health care team members have learned over the past several years is how truly helpful parents and families can be to one another. Parents groups and sibling groups can effect an exceptionally high level of understanding and support.
Health care team members can:

  • set up a psychosocial support program for the families;
  • help identify those families at time of diagnosis most in need of extra help and intervention and make the necessary level of support available for them;
  • help organize people and places where families who require additional or more intense intervention can get help;
  • help establish parent support groups;
  • talk with parents about the needs of siblings;
  • have the siblings meet other siblings, where feasible, in an atmosphere where they can give one another support.

 

Parents from parent groups can help parents of the newly diagnosed child to:

  • keep their family life as normal and continuous as possible under the circumstances;
  • ask a neighbor or friend to visit with the sick child periodically. to free the parents to spend some time at home with the siblings;
  • guard against favoritism toward the sick child over the siblings (e.g., gifts from grandparents) and to recognize potential resentment;
  • make an effort to spend special time with the siblings;
  • start a sibling group.

Siblings can reflect on and share their own special needs; carefully chosen older “cured” siblings and even cured patients can share coping hints and suggestions with siblings of newly diagnosed patients.
Schools and teachers: As the parents focus on the sick child, siblings continue to attend school and often express their anger, fears, anxieties, and resentments in the classroom. A sympathetic teacher well informed by parents or staff can provide the understanding and support the sibling needs at that time.

 

 

Additional Guidelines for Specific Phases

In addition to the general guidelines applicable across all phases of treatment, there are issues and concerns for siblings specific to each of the treatment periods.

At diagnosis:

  • health care team members and other parents when feasible should share with the parents of a newly diagnosed child the need to keep siblings informed from the very beginning. demystifying the illness and the treatments;
  • parents should be encouraged to bring the siblings to the hospital if the siblings wish to go, let them visit with their brother or sister, and let them sec how the hospital looks;
  • parents should be encouraged to explore the benefits of immediately telling the siblings, and should help choose which person will be the one to inform the siblings, using simple and age-appropriate language and phrasing when delivering the news of the diagnosis:
  • siblings should have explained to them that they were in no way responsible for causing the cancer.

During the treatment phase:

  • as above, parents should be encouraged to bring the siblings to the hospital throughout the course of treatment, in keeping with the wishes of the family, siblings, and patient;
  • explanations of the treatment procedures should be made available to the siblings at an age-appropriate level, and the siblings should continually be updated regarding the patient’ s progress. if they desire to be;
  • parents should take turns staying either at the hospital with the patient or at home with the siblings; in the case of single parents, the parent should be given the support necessary to allow them to continue paying attention to the siblings;
    written, audio, and/or video material and information should be made available for keeping family and siblings informed.

In the event of relapse:

  • at each child’ s age and level of development, as noted above, parents should communicate with the siblings the changes that will again take place when there is a relapse, the reasons for the changes, and the fact that new therapies will be involved, with the repetition of relevant items listed in the two preceding sections.

During bone marrow transplantation:

  • as the patient prepares for a bone marrow transplant, the siblings should have explained to them the reasons for this new phase of treatment and the severity of what may be entailed;
  • siblings to be tested for potential bone marrow donation should have the reasons explained;
    several issues regarding siblings should be monitored:
  • fear of being chosen, fear of not being chosen, guilt if the patient does not survive;
  • siblings should be allowed to enter into the decision making process about whether they wish to donate their bone marrow;
  • complete and honest information should be shared with the siblings throughout the course of the transplant phase, before and after transplant, both when the transplant is successful and when it is not;
  • the family should be encouraged, especially during this phase, to minimize as much as possible changes in their style of life and should be given help and assistance in doing so;
  • if the sibling is not an available donor, genetic issues and reasons should be discussed and clarified.

After completion of treatment:

  • when the treatment of the child is judged to be completed, the family should attempt to resume as full and normal a life as possible, without the prior limitations of treatment;
  • the parent should take extra care not to overprotect the cured child; they should encourage the child to keep trying new things;
  • as the children develop and become increasingly curious about the illness, family communication about the cured cancer should continue at increasingly sophisticated levels;
  • siblings should be kept abreast of any late effects of treatment the patient may be experiencing.

During palliative care and terminal phase:

By far the most difficult and psychologically painful phase for those children and parents who must undergo it is when the health care team comes to the decision that treatment is no longer effective. One of the SIOP Psychosocial Guidelines has been dedicated to this very sensitive and delicate phase, and reference is made to those Guidelines for a more extensive delineation of suggestions for this phase (See Guidelines for Assistance to Terminally Il1 Children With Cancer). A brief overview of critical points is given here, with the understanding that one should refer to the more extensive work for a more thorough set of guidelines.

  • from the beginning of the time of palliative care through the death itself, and afterwards, the members of the health care team should be sure to bring the siblings into the discussions:
  • siblings should be encouraged, depending on their age, to choose whether or not and how much they wish to be included during the course of palliative care. For example, entering into the family decision-making process regarding whether or not the patient would die in the home;
  • siblings should also be encouraged, depending on their age, to choose whether or not and how much they wish to be included in decisions regarding final disposition and memorial services (for example, in helping the family make funeral choices. helping choose their brother’ s or sister’ s clothes, helping plan memorial services), while recognizing that the siblings may not want to participate in decisions regarding the final process;
  • siblings going through the phases of anticipatory mourning and bereavement should have available resources for help, most especially those siblings who may need special counseling;
  • falsely protecting the siblings by exclusion during the terminal phase can lead to serious adjustment problems later, health care team members should share with parents findings in the literature that point to the benefits of appropriate sibling participation and should encourage parents to involve the siblings as much as is feasible.

SUMMARY OF ESSENTIAL POINTS: PRINCIPLES FOR ASSISTING THE SIBLINGS
Members of the health care team and the parents should:

  • involve the siblings from the very beginning;
  • keep the siblings informed in an age-related manner with written, audio, and/or video material through the different phases of the disease;
  • whenever possible continue to emphasize the positive and optimistic side of treatment; in addition
  • parents groups and sibling groups can effect an exceptionally high level of understanding and support;
    o siblings should have explained to them that they were in no way responsible for causing the cancer;
    o parents should be encouraged to bring the siblings to the hospital, especially if the siblings wish to come;
    o siblings to be tested for potential bone marrow donation should have the reasons explained;
    o siblings should be kept abreast of any late effects of treatment the patients may be experiencing.

 

Additional Readings

Barbarin OA. Sargent JR, Sahler OJZ. et al. Sibling adaptation to childhood cancer collaborative study: parental views of pre- and post-diagnosis adjustment of siblings of children with cancer. J Psych Oncol 199613:1-20.

Chesler MA. Allswede J. Barbarin OA. Voices from the margin of the family: siblings of children with cancer. J Psych Oncol 199 1;9: 19-42.

Dolgin MJ, Blumensohn R, Mulhern RK, et al. Sibling adaptation to childhood cancer collaborative study: cross-cultural aspects. J Psych Oncol 1997;15:1-14.

Packman WL. Crittenden MR, Rieger-Fisher JB. et al. The Kinetic Family Drawing with donor and non-donor siblings of pediatric bone marrow transplant patients. Art Ther J Am Assoc 1998;15: 177-184.

Sargent JR. Sahler OJZ, Roghrnann KJ, et al. Sibling adaptation to childhood cancer collaborative study: siblings’ perception of the cancer experience. J Pediatr Psychiatr 1995:20:151-164.

Childhood Cancer Institution | CCI Affiliates
Childhood Cancer International