Traumatic Stress and Childhood Illness: Providing Trauma Informed Care Tiara T. Muhr, RN, MSN UW PPC Trainee Madison, WI

Overview Prevalence of Chronic Childhood Illness Medical Traumatic Stress Stress Responses Prevalence of Medical Traumatic Stress Treatment Implications Trauma Informed Care Screening Tools Post-Traumatic Growth Resources for Providers

Epidemiology Chronic Childhood Illness 13 – 20% of U.S. children have chronic health conditions ▫1/3 have moderate to severe health conditions (Knafl & Santacroce, 2010)

Each Year in the U.S. 5 out of 100 children hospitalized for a major acute or chronic illness, injury, or disability 11,000 + children diagnosed with new cancers ▫250,000 children who are cancer survivors 1,000 + children have organ transplants ▫several thousand more are awaiting transplants (National Child Traumatic Stress Network - NCTSN)

Pediatric Medical Traumatic Stress Psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences. (NCTSN, 2011)

Why do medical events potentially lead to traumatic stress? These events challenge beliefs about the world as a safe place; they are harsh reminders of one’s own (and child’s) vulnerability. There can be a realistic (or subjective) sense of life threat. High-tech, intense medical treatment may be frightening, and the child or parent may feel helpless. There may be uncertainty about course and outcome. Pain or observed pain is often involved. Exposure to injury or death of others can occur. The family is often required to make important decisions in times of great distress.

Traumatic Stress Responses Arousal ▫Fearful ▫Jumpy ▫Insomnia Re-experiencing ▫Intrusive thoughts ▫Flashbacks Avoidance ▫Avoidance of reminders of trauma Dissociation ▫Memory Problems

Children’s vs. Parental Responses Children react to medical procedures and treatments Somatic symptoms ▫Mimic those of illness Parents, grandparents, & siblings undergo different stressors Psychological ▫Higher rates of PTSD

Prevalence of Significant Traumatic Stress Symptoms 2006 Meta-analysis found average of ▫20% in studies of injured children ▫12% in studies of ill children ▫Similar rates for parents of ill children (Kahana, et al., 2006)

PTSD and Chronic Health Conditions PTSD identified in 22% of parents of children with chronic health conditions ▫19.6% - mothers ▫11.5% - fathers 85% of siblings of cancer survivors found to have traumatic stress (Cabizuca, et al., 2009)

Family Experience of Traumatic Stress in Cancer Survivors (Kazak, et al., 1997)

Traumatic Stress Responses Treatment Implications

Dissociation Inability to integrate information into memory Inability to recall condition, treatment, prognosis information Emotionally unavailable to child (Santacroce, 2002)

Avoidance & Treatment Adherence Frequent hospitalizations Increased provider visits Higher health care costs Increased burdens of care on families 26% of heart transplant recipient deaths attributed to non-adherence. PTSD a contributing factor. (Shaw, 2001)

Stuber & Shemesh Study 19 pediatric liver transplant patients ▫6 had PTSD symptoms ▫3 of 19 non-compliant  All 3 had PTSD symptoms  All 3 became compliant when treated for PTSD (Stuber & Shemesh, 2006)

Hypervigilance Overprotect child ▫Forbid participation in beneficial activities Overemphasize illness Fail to discipline ▫Behavioral issues

Trauma Informed Care Information for Providers

Trauma Informed Care Objectives Ensure that children have access to effective trauma services and interventions ▫Increase knowledge about trauma within systems ▫Increase skills for identifying and triaging traumatized children ▫Promote strong collaborations across systems and disciplines

What Providers Can Do Every child and family will not need the same level of support. Majority will benefit from psychoeducation, comfort, and basic assistance. A smaller number with acute distress will need interventions that promote medical adjustment or adherence. Only a few families with severe distress will need mental health treatment.

UNIVERSAL trauma-informed care Minimize potentially traumatic aspects of medical care and procedures Provide child and family with basic support and information Address distress (pain, fear, loss) Identify family strengths and resources (help parents and family help the child) Screen to determine which children and families might need more support, and make appropriate referrals Provide anticipatory guidance about adaptive ways of coping

Health Professionals Can… Provide information and basic coping assistance for all children & families facing potentially traumatic medical experiences (illness, injury, painful procedures). Promote early identification and preventive interventions with children & families who may be more vulnerable to posttraumatic stress. Refer high-risk families and those with persistent traumatic stress symptoms for mental health assessment and intervention. Further educate yourself through continuing education, reading professional literature, and consultation with knowledgeable colleagues.

D-E-F Protocol for Trauma Informed Care

Screening Tools D-E-F Nursing Assessment Form Hospital Emotional Support Form PCL-C for DSM-IV Psychosocial Assessment Tool (PAT) Screening Tool for Early Predictors of PTSD (STEPP)

Post Traumatic Growth Transformation resulting in positive growth as result of experiencing trauma ▫Personal strength ▫Belief in new possibilities ▫Enhanced abilities in relating to others ▫Deeper appreciation of life ▫Spiritual changes (Kilmer & Gil-Rivas, 2010)

Provider Resources National Child Traumatic Stress Network ▫ Health Care Tool Box – Trauma Informed Care ▫ Center for Pediatric Traumatic Stress The Children’s Hospital of Philadelphia ▫Phone: ▫

Handouts D-E-F Nursing Assessment Form Hospital Emotional Support Form DSM-IV Criteria for PTSD

Sources Cabizuca, M., Marques-Portella, C., Mendlowicz, M.V., Coutinho, E. S. F., Figueira, I. (2009). Posttraumatic stress disorder in parents of children with chronic illnesses: A meta-analysis. Health Psychology, 28(3). Kazak, Alderfer, Rourke, et al. (1997). Posttraumatic stress symptom and posttraumatic stress disorder in families of adolescent cancer survivors. Journal of Pediatric Psychology. Kahana, S.Y., Feeny, N.C., Youngstrom, E.A., & Drotar, D. (2006). Posttraumatic Stress in Youth Experiencing Illnesses and Injuries: An Exploratory Meta-Analysis. Traumatology 12; 148. Kilmer, R.P. & Gil-Rivas, V. (2010). Exploring posttraumatic growth in children impacted by hurricane Katrina: Correlates of the phenomenon and developmental considerations. Child Development, 81(4), p Knafl, K.A. & Santacroce, S.J. (2010). Chronic conditions and the family in P.J. Allen, J.A. Vessey, & N.A. Shapiro (Eds.) Primary Care of the Child with a Chronic Condition. St Louis, MO: Mosby Elsevier. National Child Traumatic Stress Network (2010). Medical stress in children and families (pdf). Santacroce, S.J. (2002). Uncertainty, anxiety, and symptoms of posttraumatic stress in parents of children recently diagnosed with cancer. Journal of Pediatric Oncology, 19, p Shaw, R.J. (2001) Treatment adherence in adolescents: Development and psychopathology. Clinical Child Psychology and Psychiatry, 6(137). Stuber, M.L. & Shemesh, E. (2006). Post-traumatic stress response to life-threatening illnesses in children and their parents. Child and Adolescent Psychiatric Clinic of North America.