Matching Sibling Risk and Support
Many siblings show resilience when faced with a brother or sister's cancer diagnosis. However, a smaller number of siblings experience moderate or high levels of psychosocial risk. Identifying a sibling's psychosocial risk level can help ensure that they are matched to the appropriate supportive services for their needs.
The pyramid below highlights some of the sibling-focused supports best suited for siblings with low risk (i.e., Universal supports), moderate risk (i.e., Targeted supports), and high risk (i.e., Clinical supports). These support services can be based in the hospital or in the community, and often involve coordination between hospital and community providers.
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Hover over the boxes below for more information.
Italicized steps represent comprehensive suggestions.
Medication evaluation as needed
Medication evaluation as needed
Referral for individualized psychotherapy (hospital- or community-based)
Referral for individualized psychotherapy (hospital- or community-based)
Raise sibling concerns to oncology team
Raise sibling concerns to oncology team
Focus on coping skills training
Referral for short-term hospital- or community-based treatment
Consultation to community providers
Consultation to community providers
Raise sibling concerns to school
Raise sibling concerns to school
Hospital volunteer might routinely enroll all siblings
Referral to community-based resources
Work with families to identify supports such as schools, clergy, coaches, pediatrician
Identify formal and informal community-based supports
May include info sheets, websites, & webinars re: common sibling reactions, needs, & red flags
Educational materials
Consult with parents re: signs & symptoms of sibling distress & ways to support siblings
Psychoeducation consults
Groups may be based within oncology or part of a hospital-wide program; use of telehealth approaches may help address barriers to access
Hospital- or telehealth-based sibling groups
May include sibling support groups or oncology camps that include siblings
National sibling programs and camps
May include school-based education for sibling's peers about cancer
School-based resources
Hospital
Community
Pyramid made using Biorender.com
Sibling Case Studies in Matching Risk and Support
Universal Risk
About Maya (Age 5)
Maya was thrilled when she became a big sister, but life at home has changed in significant ways since her little brother was diagnosed with cancer. Her parents are sometimes gone for days at a time when they take her brother to the hospital. During these trips, Maya’s grandmother takes care of her at home. Although Maya and her grandmother are close, Maya still cries when her parents leave, and even when her parents are home Maya feels uncertain and has started to suck her thumb again. Maya has also been more competitive and crankier around her brother, and she has been having more difficulty than usual sharing her toys with him. On one occasion, Maya saw her father get upset and cry; she felt very frightened and asked if her brother was going to die.
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A Response to Maya’s Needs
The psychosocial team at her brother’s hospital asked Maya’s parents to complete a brief sibling-specific screener. Based on these screening results, the team explained to Maya’s family that Maya’s behaviors were typical for kindergarten-aged siblings and gave Maya’s family a pamphlet describing common sibling reactions and ways of supporting siblings. The team also provided examples of “red flags” for children Maya’s age, such as increased acting out behaviors at home or school, as well as changes in sleep. The psychosocial team also enrolled Maya in a community-based, nationwide program for siblings of children with cancer. As part of this program, Maya receives mailings with art-based activities and short stories that she can read with her parents or grandmother to help her process her cancer-related emotions. At the psychosocial team’s suggestion, her parents are planning on enrolling Maya, her grandmother, and the rest of the family in a camp program this summer that is offered for families of children with cancer.
Targeted Risk
About Emma (Age 15)
Emma's family and friends typically describe her as laid-back, but since her sister's cancer diagnosis, Emma has been more worried than usual. She has had trouble sleeping and reports that she has been trying to avoid thinking about cancer, though thoughts of cancer still pop into her mind frequently. As a result, Emma has been having difficulty focusing in classes, and some of her grades have started to slip. She also seems less interested in her extra-curricular activities and recently missed a couple of basketball practices and games. She says games just aren’t the same without family there. Emma and her parents report that Emma has few sources of social support outside of her immediate family, who have been less available since the cancer diagnosis.
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A Response to Emma’s Needs
The psychosocial care team asked Emma’s parents to complete a brief screening measure designed to get a sense of Emma’s psychosocial risk. The results suggested Emma was experiencing heightened distress, so the psychosocial team conducted a formal sibling-specific psychosocial assessment and provided Emma and her family with psychoeducation about common reactions in siblings of children with cancer. In addition, given Emma’s distress and functional impairments (such as difficulties sleeping, completing school work, studying for tests, and participating in extracurriculars) the psychosocial team helped to connect Emma with a school-based counselor who meets with Emma once a week. With this counselor, Emma is working on developing coping skills to manage her strong emotions and refocus when she starts to worry about her sister. Emma’s school and the hospital-based psychosocial team continue to communicate on a monthly basis to provide updates on Emma’s progress.
Clinical Risk
About Naveen (Age 9)
When Naveen’s sister first got sick, no one knew what was wrong with her. Seeing her in pain and being uncertain about what would happen to her was scary for everyone, including Naveen. Naveen continues to have nightmares about those frightening first weeks even though his sister is now receiving cancer treatment. He doesn’t like to talk about his sister’s cancer or see things that remind him of her illness. His parents have been encouraging him to visit his sister in the hospital, but he refuses. He once had a “meltdown” when his parents insisted that he visit, and he wouldn’t leave the house. Naveen is usually outgoing and has a close circle of friends, but his parents and teachers have noticed that he has become increasingly withdrawn. At home, he is spending more time in his room, and instead of going out to recess at school, he has been going to the nurse’s office complaining of stomachaches. When Naveen was 6, he was diagnosed with Separation Anxiety Disorder. Naveen would become extremely upset when his parents left for work or when he left for school in the morning, and he would constantly worry that something bad might happen to his parents while he was away from them. Naveen successfully completed a series of cognitive behavioral therapy sessions a couple of years ago to address his separation anxiety and has not received any “booster” sessions for his anxiety since.
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A Response to Naveen’s Needs
Naveen’s parents completed an initial brief psychosocial risk screener that highlighted his current emotional difficulties and history of anxiety. After conducting a formal sibling-specific psychosocial assessment, the psychosocial care team at the hospital spoke with the family about common “red flags” for posttraumatic stress symptoms. The team then helped connect Naveen with a psychosocial service provider in the community who takes the family’s insurance. Naveen meets with this provider for individualized psychotherapy once a week; his parents sometimes sit in on these sessions so that they can learn more about how to support Naveen. The psychosocial team at the hospital also checks in with Naveen’s parents regularly to hear how Naveen and the rest of the family are coping, and they plan on re-assessing Naveen in three months or sooner if his sister’s condition changes.
Sibling Blueprint
Our goal is to help psychosocial providers and their centers overcome common barriers and better support siblings when a brother or sister has cancer.
Funding
We are grateful to the Mattie Miracle Cancer Foundation for funding this research.
Email: childfam@bu.edu
Phone: 617-358-1633
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