Getting My Center Involved

Most centers treating childhood cancer recognize the need for family-centered care, but as a field we aren’t always aware of how important it is to include siblings in that care. Psychosocial providers can play a key role in promoting awareness of siblings’ needs. Some useful steps for building awareness include:

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• Promote visitation policies that are inclusive of siblings whenever clinically possible

• Share information about siblings needs’ with parents and caregivers as part of psychoeducation, and encourage parents to share their questions or concerns about siblings going forward

• Provide trainings to center staff about siblings’ needs and opportunities to address these needs

• Include discussion of siblings’ needs in pediatric cancer rounds

• Develop a systematic, institution-specific protocol for sibling screening, assessment, and service linkage

 Absolutely! We recognize that centers have multiple competing demands, and may have limited financial, staff, and time resources to devote to sibling services. Many of the suggestions offered on this page and in other parts of the website are low-cost and easy-to-implement. Some specific low-cost suggestions include:

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• At the initial meeting with families, and again approximately three months into treatment, ask a single standardized question about siblings (e.g., “Has [sibling] had any recent changes in mood (post-diagnosis) or changes in behavior at home or school?”) to screen for psychosocial risk

• Add a page to your center’s website with information for parents on the needs of siblings of children with chronic medical conditions and tips on how to support siblings

• Refer families to a community-based, no-cost program for siblings, which provides activities like sibling support groups and summer camps

• Ask volunteers to compile a list with referral information for community providers who offer coping skills training for youth, which can be reviewed by the psychosocial team and then offered to families at the initial meeting, and again at least three months post-diagnosis or at any medical event

Different centers and staff at a given center may be compensated differently for sibling psychosocial services. Some providers may be salaried, whereas others may bill for services. Understanding institutional policies surrounding clinician billing can help to ensure that siblings’ needs are met and providers are compensated for their time with siblings. Some suggestions for navigating billing practices regarding sibling services include:

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• If a sibling meets diagnostic criteria for an adjustment disorder or other DSM disorder, consider applying these diagnostic codes when billing for sibling services

• If institutional policies only allow for billing of sibling services if the sibling is also a patient at the hospital/center, consider referring the sibling for formal psychosocial treatment at the center, if appropriate

• If institutional policies do not allow for billing of sibling services, work with center administrators to organize staff roles and accountabilities such that siblings’ needs may be met by salaried providers

One commonly-cited barrier to providing sibling services is a lack of direct contact with siblings in the hospital or center. Some institutions may serve patient populations who travel long distances to receive care; these families may be less likely to bring siblings along for center visits. Furthermore, in the age of COVID-19, many centers are tightening visitation policies to prevent the spread of infection. These policies often prevent siblings from visiting the center at all. Some suggestions for addressing these barriers include:

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• Conduct sibling screening through in-person, standardized check-ins with parents during hospital or clinic visits

• Conduct screening and/or assessment directly with siblings via telehealth technologies (e.g., phone call, video call)

• Refer siblings to local community-based or online services (e.g., psychosocial providers, support groups)

• Build the infrastructure to provide sibling support services remotely via telehealth. See “Let’s Get Technical” below for further suggestions on the use of telehealth capabilities.

Childhood cancer affects families across all racial, ethnic, cultural, and socioeconomic backgrounds. Understanding the nuances of these socio-cultural factors and how they can influence families’ needs can be a challenge in cancer care. Some suggestions for socio-culturally informed steps to sibling care may include:

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• Provide a routine or systematic screening measure to siblings and families in their primary language.

• Provide options for screening measures to be completed at home as a “paper-and-pencil” or online form for those siblings and families living considerable distances from the hospital.

• Utilize your institution’s medical interpretation services should a sibling or family need an interpreter to pass along information on sibling needs.

• Provide culturally indicated support formats. For example, some families may prefer to engage siblings in individual sibling-specific support services, whereas for others a more collective and family-focused approach to support services may be preferred.

• Ensure sibling referral resources include providers and centers who provide sliding fee schedules, multilingual services, and who accept different forms of insurance (e.g., Medicaid).

The ways in which siblings are impacted by a brother or sister’s cancer diagnosis can vary by age. For example, the experience of a sibling who is an infant at the time of their brother or sister’s diagnosis will differ from that of a school-aged sibling. It is important, then, for providers to recognize what is developmentally normative in terms of child behavior and psychosocial functioning. Some suggested steps for age-appropriate sibling care include:

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• Provide psychoeducation to parents on developmentally normative behaviors and expected sibling responses to a cancer diagnosis (e.g., crying occasionally throughout the day is normative for an infant, but regular tearfulness or low mood in a 14-year-old sibling may point to increased psychosocial difficulty).

• Use the appropriate developmental version of standardized psychosocial risk assessment tools depending on the sibling’s age

• Provide developmentally appropriate resources to siblings depending on age (e.g., a younger sibling may engage in art therapy or play with child life specialists as a way to discuss their brother or sister’s illness).

Different centers have different procedures for documenting psychosocial services for siblings depending on institutional policies. In many cases, a clinician might be unable to create an electronic medical record unique to the sibling, which may present challenges for documenting a sibling’s risk level, engagement with support services, and coping over time. Suggested steps for addressing this issue include:

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• Build sibling-related reminders (e.g., regular screening intervals) into the patient’s electronic medical record

• Flag the sibling’s potential risk factors (e.g., declining academic performance, increased anxiety) in the electronic medical record to monitor/assess regularly

• If institutional policies allow, create a unique medical record for the sibling to keep track of sibling services and recommendations (e.g., community-based referrals) and link the sibling’s EMR to the patient’s EMR

One barrier to siblings receiving services is that siblings are often not on site for assessment or to receive services. Telehealth technologies may provide a unique opportunity to reach siblings who are unable to be physically present at the hospital. Though centers have varying telehealth capabilities and different policies around offering remote services to families, telehealth provides one potential low-cost strategy for reaching siblings. Suggested steps for using telehealth in this capacity include:

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• Conduct remote, standardized check-ins with parents and siblings together or individually while the family/sibling is at home. This option can be utilized when siblings are unable to be present in the hospital setting.

• Provide psychosocial services (e.g., sibling groups, psychotherapy) to siblings remotely via video conferencing software.

We’re excited to be a resource for you as you take on this important work. For some ideas on where to begin, check out our sample Timeline for Services, which provides suggestions for the kinds of psychosocial risk screening, assessment, and support services that siblings might receive at each stage in the cancer journey. Some other resources that you might find helpful include:

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• A pyramid model for matching siblings psychosocial risk level to the appropriate supports

• Case studies in matching sibling risk and support for siblings of different ages

• Case studies highlighting how different institutions with different resources might meet siblings’ needs

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We hope that this information will be helpful to your center!