Siblings' Experiences With Childhood Cancer: A Different Way of Being
Childhood cancer and its treatment result in many challenges that impact the entire family. For siblings of children with cancer, the challenges can be particularly stressful as they often undergo tremendous change in their lives. Although there is a sound and growing body of knowledge on how siblings experience childhood cancer, there is still much to be learned. Part of a larger qualitative study aimed at detailing childhood cancer experience and its symptom trajectory from the perspective of parents, ill children, and siblings, this study aims to describe findings specific to 30 siblings who participated in the study. Siblings took part in individual interviews, focus group interviews, and participant observation. The constant comparative method of data analysis yielded the theoretical category of "ways of being in the world," which referred to the different ways that cancer impacted on the lives of children with cancer and their families. For the siblings, cancer was experienced as a different way of being within their family and involved siblings undergoing a loss of a family way of life and a loss of self within the family. Three themes related to a different way of being in the family were identified: committing to keeping my family together, being present, and enduring sadness. The findings reinforce that more needs to be done in helping healthy siblings through childhood cancer.

Families of children with cancer must face many challenges, including uncertainty, disruptions and restrictions in the daily life, increased psychological and physical work, lengthy and rigorous treatment regimens, and multiple losses. For siblings of children with cancer, the challenges can be particularly stressful as they often undergo tremendous change in their lives, especially during periods when their ill brother or sister is hospitalized and/or is experiencing periods of increased symptom distress. Helping siblings through the childhood cancer experience is conditional upon building a sound and comprehensive knowledge base that is grounded in the meanings that siblings assign to childhood cancer.

There is a growing body of literature related to siblings' experiences with childhood cancer that is derived from quantitative and qualitative research. A good portion of this work is concerned with the psychosocial functioning of siblings. To date, research shows that siblings experience both positive and negative outcomes in response to the stressors of childhood cancer. In regard to positive outcomes, some studies indicate that the cancer experience may promote psychological and social growth in siblings, including increased personal maturation, positive self-perceptions, enhanced social competence, capacity for prosocial behavior, more compassion and caring, and increased family cohesion. Research also reveals the absence of difficulties in coping and adaptation in siblings of children with cancer and note that their adjustment is comparable with standardized norms. In contrast, other studies show that siblings are at greater risk for behavioral problems, including poor academic achievement, mood disturbances, conduct problems, and difficulties in social relationships. Siblings have also been reported to experience feelings of deprivation, displacement, anger, guilt, loneliness, isolation, injustice, increased anxiety, vulnerability, and burden. Research has also shown that siblings of childhood cancer survivors experience posttraumatic stress. In one study, 49% of siblings reported mild posttraumatic stress symptoms and 32% indicated moderate to severe levels 5 years after treatment cessation. Taken together, the findings on sibling adjustment to childhood cancer indicate that the outcome of sibling adjustment is neither simple nor direct.

In assessing how siblings adapt to cancer, researchers have also been concerned with certain factors associated with siblings' adjustment. These include factors related to family support and functioning. Research indicates that higher levels of family cohesion and adaptability, lower levels of family disruption, increased family support resources, and enhanced intrafamilial communication are associated with more favorable sibling outcomes and reinforce the significance of promoting family-centered care when caring for individuals with life-threatening or chronic illness.

Illness-related variables and their relationship to adjustment in siblings have also been empirically examined. Schuler et al found that siblings' adjustment difficulties improved during remission and were worst during the terminal phase. Even more telling in relation to illness-related variables is how siblings react to their brother's or sister's cancer based on how severe the symptoms are and how their brother or sister looks physically. Martinson et al revealed that it was not until the ill child's symptoms worsened that healthy siblings realized that their ill brother or sister was really sick. Similarly, findings from a qualitative study that described the changing appraisals of siblings and parents related to childhood leukemia indicated that early symptoms in the ill child were dismissed by siblings or ignored as unimportant. However, as the illness progressed, older siblings noted enough evidence of parental anxiety to concern them, even when they were told that the ill child "had a cold" or was "sick" and had to stay in the hospital to get better. Worrying and "keeping an eye" on the ill child were part of the siblings' responses to the cancer. Another study revealed that seeing their ill brother or sister change in physical appearance was the most difficult aspect of the experience for siblings. Collectively, these findings suggest that the impact that cancer symptoms have on healthy siblings may be closely related to how they view the overall cancer experience. However, although there is a sound and growing body of knowledge of how siblings experience childhood cancer, there is still much to be learned.