Tools and Resources

Many mental health professionals are familiar with child trauma and traumatic stress related to child abuse, neglect, and exposure to violence. Medical trauma has some distinct characteristics that may impact the course of traumatic stress symptoms and have implications for medical care and psychosocial intervention, including:

  • Experience of pain / ongoing pain
  • Painful / distressing procedures
  • Sedation and loss of consciousness
  • Separation and isolation
  • Exposure to sickness, injuries, or death of others
  • Ongoing physical and health consequences

Resource Guide for Mental Health Professionals

Whether working as a consultant to the child’s health care team or seeing children in the context of their own practice, mental health professionals working with ill or injured children and their families need an understanding of pediatric medical traumatic stress and the available interventions and resources.

Based on the most recent research, Working with Children and Families Experiencing Medical Traumatic Stress: A Resource Guide for Mental Health Professionals is designed to help psychosocial professionals who are working with children and families impacted by illness or injury. This resource is for professionals who are familiar with trauma-focused treatment, and provides an overview of pediatric medical traumatic stress (PMTS), resources and materials to educate medical colleagues (physicians, nurses, physician assistants), and psychosocial screening, assessment, and intervention resources and materials.

Download Working with Children and Families Experiencing Medical Traumatic Stress: A Resource Guide for Mental Health Professionals to learn about pediatric medical traumatic stress and improve mental health care for ill or injured pediatric patients and families.

The difficulties that surround the diagnosis, treatment, and recovery from a medical condition challenge a pediatric patient and family’s resilience. Each patient and family will cope in their own unique ways and many will cope well given the circumstances. However, some may benefit from additional support.

Cellie Coping Kit Collage

Partnering with parents, doctors, nurses and other members of the medical team can support patients with the Cellie Coping Kit, an evidence-based coping tool developed by researchers at the Children’s Hospital of Philadelphia and Kentucky Children’s Hospital, The Cellie Coping Kit, designed for children aged 6–12 years and their parents, promotes coping and resilience utilizing evidence-based, cognitive-behavioral coping techniques (e.g., relaxation, social support seeking) for a range of stressors, including procedures, emotions related to the child’s medical condition, recovery and treatment, treatment side effects, and challenges related to school and peers. The Cellie Coping Kit includes:

  • Cellie is a stuffed toy used for engagement. Cellie is also integrated into many of the coping tips
  • Coping Cards are a set of cards that provide children with evidence-based, cognitive-behavioral coping techniques for a range of common stressors specifically related to their medical condition.
  • The Caregiver Book offers strategies for parents to help children cope with their medical condition, as well as advice for dealing with parents’ own challenges (e.g., caring for siblings, working with the medical team).

Cellie Coping Kit

What makes The Cellie Coping Kit unique?

  • Addresses a broad array of medical condition challenges. The Kit identifies stressors that are specific to a medical condition and its treatment – such as chemotherapy, nausea, pain, and long hospital stays – and suggests a variety of coping tips for each stressor. The Kit has been adapted for cancer (available in English and Spanish) , sickle cell disease , injury (COMING SOON!), and food allergies (COMING SOON!).
  • Easy for kids to use. Child-friendly language, artwork and go-anywhere design makes the Kit accessible to children and easy to use in any setting without the help of a behavioral health professional.
  • Packed with advice. In total, the Kit includes over 150 coping strategies for children and families, with “here and now” advice for parents to use to help their children cope.
  • Developed from diverse sources. The Kit provides coping strategies for children and families that come from research, advice directly from families that have faced cancer, sickle cell, injury, or food allergies, and leading experts in pediatric illness and injury.
  • Customizable to every family. Families can choose the stressors that are most relevant to their experience and the coping strategies that work best for them. And children can include their own ideas on writeable coping cards.
  • Can be integrated into treatment. Whether a child life specialist is demonstrating a procedure on the toy, or a psychologist is talking through stressors and coping tips with the child, the Kit can be incorporated into many elements of care.
  • Encourages communication. The topics covered in the kit encourage important, productive conversations between parent and child, parent and healthcare provider, and child and healthcare provider.

 

Cellie Coping Kit Group

How to Use Cellie Coping Kit in the Hospital

Children and families can use the Cellie Coping Kit on its own, at home, in the hospital, during a procedure and in conjunction with nurses, doctors, child life specialists, therapists, or other mental health providers.

Healthcare providers can work with children and families to generate ideas for using the Cellie Coping Kit in different situations. For example, if the family has difficulty naming stressors, prompt them with a stressor they may have already mentioned or discuss stressors commonly experienced by families undergoing treatment or recovering from an injury/ illness (such as needles or changes in appearance).

Using Cellie Coping Kit in Hospital

For an example of how to use the Cellie Kit with cancer patients,click here .

In a several recent published studies, children and parents found the Cellie Coping Kit easy to use, helpful, and engaging. Families reported learning new information (e.g., signs, symptoms, and progressions) and skills (e.g., implementing deep breathing) for coping with their illness, its treatment and disease management.

For more information about the Cellie Coping Kit and to purchase kit for your hospital, visit www.celliecopingkit.org. Follow Cellie Coping Kit on Facebook and Twitter!

Publications

  • Marsac, M. L., Klingbeil, O. G., Hildenbrand, A. K., Alderfer, M. A., Kassam-Adams, N., Smith-Whitley, K., & Barakat, L. P. (2014). The Cellie Coping Kit for Sickle Cell Disease: Initial acceptability and feasibility. Clinical Practice in Pediatric Psychology, 4(2), 389–399. http://doi.org/10.1037/cpp0000062
  • Marsac, M.L., Hildenbrand, A., Clawson, K., Jackson, L, Kohser, K., Barakat, L, Kassam-Adams, N., Aplenc, R., Vinsel, A, Alderfer, M.A.: Preliminary data on acceptability and feasibility of the Cellie Cancer Coping Kit. Supportive Care in Cancer, 20(12):3315-3324, 2012. doi:10.1007/s00520-012-1475-y

Social Ecological Screening

When providing care through a trauma-informed lens, screening for medical traumatic stress allows health care providers to briefly assess risk status or distress / symptoms (such as individual or family risk or protective factors) and provide children and families with the appropriate level of care. In some cases, it will be appropriate to refer to a mental health provider.

The PPPHM helps guide interpretation of screening results. Ideally, screening is done universally with all ill or injured children and their families. Many screening measures are designed to be administered by frontline providers, or for self-administration by children or parents.

Find a trauma informed screening for:

PPPHM Screening

Primary Care Providers

Healthcare providers working in primary care settings – as well as subspecialists who see children with chronic medical conditions - have a unique relationship with their patients and families. By seeing a child and family over time, these providers often develop a deeper level of knowledge and trust with their patients. Parents and caregivers often cite their pediatricians as their most trusted provider for information and advice.

This unique position provides pediatricians the opportunity to screen children and families for traumatic stress related to injury or illness as well as adverse childhood experiences, within the context of a well-child visit or ongoing care. In fact, traumatic stress experts have suggest the value of pediatricians asking a basic screening question at all well-child visits: "Since the last time I saw you, has anything really scary or upsetting happened to you or your family?" (Cohen, J. A., Kelleher, K. J., & Mannarino, A. P. (2008). Identifying, treating, and referring traumatized children: the role of pediatric providers. Archives of pediatrics & adolescent medicine, 162(5), 447-452).

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Trauma Informed Screening Tools for Healthcare Providers

DEF Protocol: The DEF Protocol provides a trauma-informed framework to guide healthcare providers through screening patients and families for distress, emotional support and family needs throughout their recovery from injury or illness.

Psychosocial Assessment Tool (PAT) is a brief parent report screener of psychosocial risk in pediatric health. Using a social ecological framework, PAT allows for identification of a family's areas of risk and resiliency across multiple domains (e.g., family structure and resources, family problems, social support, child problems, acute stress, sibling problems).

Distress Thermometer (DT): uses a graphic representation of a thermometer, generating a 1-10 uni-dimensional rating of how distressed the respondent has felt in the past week. The DT may also be used with a problem list of practical problems (e.g. housing, insurance), family problems (e.g., dealing with partner, children), emotional problems (e.g.., worry, sadness), spiritual/religious concerns (e.g., relating to God, loss of faith) and physical problems (NCCN®, 2003).

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Trauma Informed Screening Tools for Mental Health Providers

DEF Protocol: The DEF Protocol provides a trauma-informed framework to guide healthcare providers through screening patients and families for distress, emotional support and family needs throughout their recovery from injury or illness.

Psychosocial Assessment Tool (PAT) is a brief parent report screener of psychosocial risk in pediatric health. Using a social ecological framework, PAT allows for identification of a family's areas of risk and resiliency across multiple domains (e.g., family structure and resources, family problems, social support, child problems, acute stress, sibling problems).

Distress Thermometer (DT): uses a graphic representation of a thermometer, generating a 1-10 uni-dimensional rating of how distressed the respondent has felt in the past week. The DT may also be used with a problem list of practical problems (e.g. housing, insurance), family problems (e.g., dealing with partner, children), emotional problems (e.g.., worry, sadness), spiritual/religious concerns (e.g., relating to God, loss of faith) and physical problems (NCCN®, 2003).

The SEEK Parent Questionnaire: The SEEK Parent Questionnaire: screens for the targeted problems. The PQ screens for common problems that are risk factors for child maltreatment: 1) maternal depression, 2) alcohol and substance abuse, 3) intimate partner (or domestic) violence, 4) harsh parenting, 5) major parental stress, and, 6) food insecurity. It was developed for parents to complete, voluntarily, before selected well-child visits. Parents can do so while waiting and then hand the PQ to the health professional at the start of the visit. It takes about 2 minutes to complete. The PQ has 15 items on one side of one page. It has a yes/no format that is easy to use by both parents and professionals. The PQ is completed at selected checkups, such as at the 2, 9 and 15-month, and the 2, 3, 4, and 5-year visits.

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Surviving Cancer Competently Intervention Program (SCCIP)

Surviving Cancer Competently New Diagnosed (SCCIP-ND) is a manualized three-session intervention for parents and caregivers of children diagnosed with cancer. SCCIP-ND is an integrated cognitive behavioral and family systems intervention, designed to promote healthy family adjustment to pediatric cancer and treatment and to prevent cancer-related posttraumatic stress symptoms in family members.

Surviving Cancer Competently New Diagnosed (SCCIP-ND)

SCCIP-ND was based on research indicating the presence of symptoms of posttraumatic stress in childhood cancer survivors and their parents. The intervention is structured according to the following:

  • Session 1 helps caregivers identify their beliefs about cancer and discuss how beliefs influence feelings, behaviors, and family relationships.
  • Session 2 helps caregivers understand how adverse beliefs can impact family functioning and addresses the benefits of reframing beliefs to enhance their feelings, behaviors, and family relationships.
  • Session 3 engages caregivers in a guided discussion regarding the role of cancer in the family. The “Family Survival Roadmap” is used to help caregivers recognize their beliefs about the future and share beliefs with each other.

The intervention is based on four key therapeutic constructs that are integrated throughout each session: joining with the family; maintaining an interpersonal focus; normalizing the family’s experience; and focusing on the family’s strengths and growth. SCCIP-ND also utilizes the “Video Family Discussion Group” tool throughout the intervention as a virtual proxy for a supportive discussion with other caregivers of children with cancer.

Research on SCCIP-ND was supported by the National Cancer Institute (CA88828). SCCIP-ND is disseminated by the Center for Pediatric Traumatic Stress (SM058139; SM54325). The SCCIP-ND implementation materials are also available for Spanish-speaking therapists and families. For information about SCCIP-ND, its use, and upcoming trainings email This email address is being protected from spambots. You need JavaScript enabled to view it..

  • Hocking M, Kazak A., Schneider S., Barkman D., Barakat L., & Deatrick J. (2014) Parent perspectives on family- based psychosocial interventions in pediatric cancer: a mixed-methods approach. Support Care Cancer, 22, 1287-1294.
  • Kazak, A. (2005). Evidence based interventions for survivors of childhood cancer and their families. Journal of Pediatric Psychology, 30, 29-39
  • Kazak, A., Simms, S., Alderfer, M., Rourke, M., Crump, T., McClure, K., Jones, P., Rodriguez, A., Boeving, A., Hwang, W.T. & Reilly, A. (2005). Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer. Journal of Pediatric Psychology, 30, 644-655.
  • Kazak, A., Simms, S., Barakat, L., Hobbie, W., Foley, B., Golomb, V., & Best, M. (1999). Surviving Cancer Competently Intervention Program (SCCIP): A cognitive-behavioral and family therapy intervention for adolescent survivors of childhood cancer and their families. Family Process, 38, 175-191
  • Kazak, A., McClure, K., Alderfer, M., Hwang, W.T., Crump, T., Le, L., Deatrick, J., Simms, S., & Rourke, M. (2004). Cancer-related parental beliefs: The Family Illness Beliefs Inventory (FIBI). Journal of Pediatric Psychology, 29, 531-542.
  • Stehl, M., Kazak, A. E., Alderfer, M. A., Rodriguez, A., Hwang, W., Pai, A. H., & ... Reilly, A. (2009). Conducting a randomized clinical trial of an psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. Journal of Pediatric Psychology, 34, 803- 816.

Trauma Informed Care Tools: Screening, Assessment, and Intervention

Healthcare providers have the unique opportunity to intervene, and often times prevent, many adverse health outcomes, including medical traumatic stress. When a child is injured or diagnosed with an illness, all family members are at risk for medical traumatic stress. Unfortunately the level of distress experienced is often not apparent during interactions focused on medical treatment. With regular screening for pediatric medical traumatic stress, healthcare providers assist with the critical step of identifying families who would benefit from additional psychosocial support beyond trauma-informed care.

 

Healthcare providers can use the Pediatric Psychosocial Preventive Health Model (PPPHM) to guide assessment of psychosocial risks and inform clinical decision making (e.g., referrals for varying levels of psychosocial support). This preventive health model suggests that the health care team regularly screen every ill or injured patient and family for acute distress and risk factors to determine which children and families might need more attention (i.e., Targeted follow-up or Clinical/Treatment referrals) that go beyond the Universal provision of basic trauma-informed support and information for all pediatric patients and their families).

 PPPHM Risk Level

Trauma Informed Care Tools: Screening and Assessment

Screening and assessment allow health care providers to triage pediatric patients and families to the appropriate and needed level of psychosocial care. It is important to understand the difference between screening and assessing for psychosocial risk and pediatric medical traumatic stress.

 Screening or Assessment