We know that kids facing chronic or life-limiting illnesses display incredible resilience and strength. But what about the siblings of these kids? There is a profound shift in these kids’ worldviews – part of their childhood innocence is lost when their world is no longer a safe place insulated from bad things happening. Instead their world may be viewed through the lens of a host of new feelings – fear, anger, confusion, loneliness, and grief.
I believe siblings should be considered as a patient in the family unit, needing their own forms of support. To better understand the emotional needs of siblings, I reviewed recent themes in the literature. Here are my take-home lessons:
1. Honesty is the Best Policy
Perhaps we assume that siblings of children with serious illnesses want a “break” from the all-consuming nature of their brother’s or sister’s illness – to not talk about it all the time, to have a life separate from their sibling and their illness. In fact, the opposite is true. Research shows kids actually want more information (Gaab, Owens, & MacLeod, 2014).
Well siblings want to be a part of the family’s efforts to care for the sick child, and this starts with wanting to be told what is going on. It certainly makes sense that parents would want to shield their well child from the most difficult aspects of the sibling’s diagnosis, treatment, and prognosis. But the reality is that the child senses that something is going on, even if nothing is explicitly said. Ambiguity – and having to act within the confines of this uncertainty – is a significant struggle for well siblings (Long et al., 2015). They actually want and need accurate information, and moreover, these children can benefit from having open, honest conversations about the reality of their sibling’s situation. Developmentally appropriate information, when paired with opportunities to discuss and process this information, helps alleviate the stress of living with ambiguity.
2. Support the Need to Be Connected
It is inevitable that parents will need to be with the seriously ill child during his or her treatments and hospitalizations. This causes a shift in family dynamics as parents spend more time with their sick child than with the well child. Parents who discuss the reasoning behind why they have to be gone so much helps their child cope and provides an opportunity for that child to open up about how they are feeling (Long et al., 2015; Gardner, 1998).
During prolonged hospitalizations, the well child may be spending a lot of time with surrogate caregivers (Long et al., 2015). With older kids, siblings understand and are accepting of their parents need to be with their brother or sister. But that doesn’t mean it is easy for those children. They still feel lonely and left out, and need attention themselves (Nabors et al., 2013; Nolbris & Ahlstrom, 2014). They know that their parents are less available, yet they cannot help but worry about them (Long et al., 2015; Nabors et al., 2013). Siblings may hide many of their feelings from their parents so as not to burden them, and do not ask for the attention they need (Nolbris, Enskar, & Hellstrom, 2014, p. 4). By recognizing that the child is likely feeling much more than they are saying, we can work harder to bridge that gap. Finding quiet moments to talk and have one-on-one time between parent and child could help validate that child’s feelings and help them feel more comfortable opening up.
3. Understand the Role of Grief
There are different types of grief for siblings, depending on where they are in their journey (Nolbris et al., 2014). Was their sibling just diagnosed? Is he or she experiencing an increase in symptoms? Are they in remission? One study which looked specifically at families where a child had been diagnosed with cancer, identified four types of grief for siblings: anticipatory grief (after receiving information about the cancer diagnosis); grief and concern about the sick sibling’s loss of a normal life; grief over being unimportant and forgotten in the family; and the grief that continues after the sibling’s death (Nolbris et al., 2014, p. 4). Understanding that battling a chronic or life-limiting illness is like riding a wave for the entire family helps us direct attention to the needs of every member of the family, including how each person processes their grief at different stages of the journey.
References
Gaab, E. M., Owens, G. R., & MacLeod, R. D. (2014). Siblings caring for and about pediatric palliative care patients. Journal of Palliative Medicine, 17(1), 62-67.
Gardner, E. (1998). Siblings of chronically ill children: Towards an understanding of process. Clinical Child Psychology and Psychiatry, 3(2), 213-227.
Long, K. A., Marsland, A. L., Wright, A., & Hinds, P. (2015). Creating a tenuous balance: Siblings’ experience of a brother’s or sister’s childhood cancer diagnosis. Journal of Pediatric Oncology Nursing, 32(1), 21-31.
Nabors, L., Bartz, J., Kichler, J., Sievers, R., Elkins, R., & Pangallo, J. (2013). Play as a mechanism of working through medical trauma for children with medical illnesses and their siblings. Issues in Comprehensive Pediatric Nursing, 36(3), 212-224.
Nolbris, M. J., & Ahlstrom, B. H. (2014). Siblings of children with cancer—Their experiences of participating in a person-centered support intervention combining education, learning and reflection: Pre- and post-intervention interviews. European Journal of Oncology Nursing, 18(3), 254-60.
Nolbris, M. J., Enskar, K., & Hellstrom, A. L. (2014). Grief related to the experience of being the sibling of a child with cancer. Cancer Nursing, 37(5), E1-7.
Anna Kozas earned her Master’s in Counseling with an emphasis in Health Psychology from the School of Education and Counseling Psychology at Santa Clara University (SCU) and is currently the Bioethics Program Coordinator at the Markkula Center for Applied Ethics at SCU. In her role at the Ethics Center, Anna coordinates the Center’s bioethics activities and research projects. She also administers the Health Care Ethics Internship, a unique program in which undergraduates shadow a variety of health care professionals in hospitals and other health care settings. In addition to serving as a liaison between the hospitals and the university, Anna works with students as they learn about medical and ethical issues in health care; she directs the Center’s Honzel Fellow who serves as a peer educator to the Interns.
