Center Case Studies
When establishing services for siblings of children with cancer, it can be helpful to understand how other centers address siblings' needs. We've included below a series of case studies highlighting how three different centers with different resources might approach sibling initiatives. We hope that these examples might be a useful jumping-off point as you think about institutional readiness for sibling services at your own center.
Center A
A free-standing children’s hospital treats 20-40 new childhood cancer patients every year. As part of routine care, a member of the psychosocial team meets with parents of children who have received a cancer diagnosis within 30 days of diagnosis. Time constraints and limited clinical space keep initial meetings brief (~20 minutes), and topics are limited to psychoeducation for parents on expected changes for the child with cancer. Recently, a psychosocial team member has begun to ask families two standardized questions regarding the current psychosocial functioning of siblings: “Does [sibling] have any existing mental health concerns?” and “Has [sibling] had any recent changes in mood (post-diagnosis) or changes in behavior at home or school?” Information from these meetings is recorded in the patient’s electronic medical record (EMR), as the bulk of information gathered relates to the patient’s care.
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Since incorporating the sibling-focused questions into the initial meeting with parents, the team has found that parents are more comfortable raising subsequent sibling concerns that arise in the months following diagnosis. A number of parents have shared concerns about changes in siblings’ sleep patterns and behavior at home. In order to provide additional resources for siblings who are struggling, hospital volunteers have been tasked with compiling a list with referral information for community providers who offer coping skills training for youth. The list was reviewed by the team and is now included as part of the psychoeducation for parents. Because a substantial proportion of families seen at the hospital are low-income, the team made sure to include community providers who accept Medicaid insurance or have a sliding fee scale. The team also added a page to the hospital’s website with tips for parents on how to support siblings of children with chronic medical conditions.
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Most recently, the team has begun routinely enrolling all siblings of children with cancer into a community-based, nationwide, no-cost program for siblings at the initial meeting. As part of this program, siblings receive mailings with age-appropriate cancer information and fun activities which they can complete alone or with a family member. Starting in the spring, hospital volunteers will put up flyers around the hospital notifying parents of a similar community-based summer camp available to siblings.
Center B
A free-standing children’s hospital sees approximately 50-75 new childhood cancer patients per year. To ensure contact with each new family, one member of the psychosocial team checks in with families once at the start of cancer treatment and approximately every 3 months thereafter in the hospital’s outpatient clinic. During check-ins, the psychosocial provider administers a brief validated sibling-specific psychosocial screener that asks parents how siblings are coping with the cancer journey. If a sibling happens to already have an electronic medical record (EMR) within the hospital’s system, the results from this screening are documented there; otherwise, these results are documented within the child with cancer’s medical record.
At each check-in, the provider gives all families (regardless of psychosocial risk level) a printed list (also available on the center’s website) that includes informative, developmentally-appropriate websites for siblings and psychoeducational resources for parents about typical sibling reactions and needs. Since a substantial portion of families seen at the hospital are Spanish-speaking, a list of Spanish-language resources is also available.
Previously, when screening results indicated elevated distress, the psychosocial team used to provide families with a list of center-based and private practice referrals for formal psychotherapy. However, many parents expressed feeling overwhelmed by the additional task of setting up psychotherapy appointments for the sibling, and as a result, utilization of those services for siblings was low. To address this challenge, the team now asks parents for permission to contact the sibling’s school directly when a sibling is struggling. With parents’ consent, the team then connects the sibling to a school-based counselor who has been briefed on the sibling’s situation and can meet with the sibling during school hours to provide additional support. Additionally, the school-based counselor is provided the same list of referrals for psychotherapy in order to help connect families with local providers if the sibling is in need of higher-level services.
Center C
A university medical center sees approximately 120-150 new childhood cancer patients each year. The university medical center recently switched to a new electronic medical record (EMR) system. The new system allows for built-in alerts prompting psychosocial providers to administer a systematic family psychosocial risk assessment questionnaire (with a sibling-focused subscale) at diagnosis and every 3 months thereafter when the patient is in the active or maintenance phases of treatment. The team administers the questionnaires at each timepoint. Information from the family psychosocial assessment is stored in the patient’s EMR.
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If elevated psychosocial risk is detected for siblings in the screener, families are referred for an assessment with an outpatient clinical psychologist or inpatient social worker, depending on the current treatment status of the patient. At this meeting, parents and/or siblings discuss stressors, emotional and behavioral functioning, and daily functioning as part of a more in-depth diagnostic assessment. For siblings who are not present at the hospital, the sibling portion of the assessment can be conducted remotely via telehealth (e.g., Zoom), depending on the sibling’s developmental age (i.e., ≥ 8 years old). If further support is warranted, the psychosocial team provides referrals to psychological services (i.e., hospital- or community-based) that provide family- and sibling-focused psychotherapy or group treatment. The team also arranges to coordinate care between the hospital and community providers.
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In addition to these treatment referrals for siblings who have targeted or clinical levels of psychosocial risk, universal support services are available to all siblings. Two members of the team co-lead weekly sibling support groups in which siblings can share common experiences and coping strategies. Given the logistical barriers to offering these groups at the hospital (i.e., low sibling attendance, lengthy travel distance) these sibling support groups have recently moved to a video-conferencing platform which has improved attendance.
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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