Trauma-Informed Pediatric Care: What Health Care Providers Can Do

1. Trauma-Informed Pediatric Care: What Health Care Providers Can Do Center for Pediatric Traumatic Stress The Children’s Hospital of Philadelphia

2. Outline Part 1: Understanding pediatric medical traumatic stress • Definitions and impact of medical traumatic stress • Traumatic stress symptoms and risk factors • Developmental issues and role of beliefs • Intervention models Part 2: Opportunities for prevention and intervention • Trauma-Informed Pediatric Care • Integrating Family-Centered and Trauma-Informed Care • Responding to Medical Traumatic Stress • PMTS Toolkit • D-E-F Protocol • Key Intervention Points / Strategies along the continuum of care

3. Impact of Medical Traumatic Stress • Up to 80% of children and their families experience some traumatic stress reactions following life-threatening illness, injury or painful medical procedures. • 20-30% of parents and 15-25% of children and siblings experience persistent traumatic stress reactions. • When they persist, traumatic stress reactions can: • Impair day-to-day functioning • Affect adherence to medical treatment • Impede optimal recovery • Affect relationships between providers and patients.

4. What is Medical Traumatic Stress? “A set of psychological and physiological responses of children and their families to pain, injury, medical procedures, and invasive or frightening treatment experiences.” National Child Traumatic Stress Network, 2003

5. Defining Medical Traumatic Stress • Medical traumatic stress responses: • are related to subjective experience of the event • includes symptoms of arousal, re-experiencing, and avoidance • vary in intensity • can become disruptive to functioning

6. Responses to Medical Trauma • When facing serious illness or injury many pediatric patients and their families are able to cope well, with the basic supportive interventions and with time • Some may develop persistent traumatic stress reactions, such as posttraumatic stress disorder, which impedes both health and psychosocial functioning. • As pediatric health care providers, you have an opportunity to make a difference in how children and their families experience serious illness, injury, and the medical care they receive.

7. Responding to Traumatic Stress • By incorporating an awareness of traumatic stress responses, health care providers can: • Minimize potentially traumatic aspects of medical care • Identify children and families at higher risk for persistent distress or posttraumatic stress • Provide brief interventions that reduce the emotional impact of trauma and prevent posttraumatic stress disorder

8. PMTS Toolkit • Health care providers treating children and families already have the many of the basic interpersonal and psychosocial skills required in addressing traumatic stress responses • The information and tools contained in the Pediatric Medical Traumatic Stress Toolkit can help you hone or enhance your skills • You can download a copy of the Toolkit materials at: www.nctsn.org/medtoolkit

9. What’s in the PMTS Toolkit?

10. Integrating Family-Centered Care and Trauma-Informed Care FAMILY-CENTERED CARE: “…involves improving patient and family access to information about their condition, building on family strengths and enhancing family skills in caring for the child and increasing the involvement and collaboration of family members in health care decisions.” -Institute of Medicine, US

11. Family-Centered Care • Incorporates maximum possible involvement of families during all phases of care, and calls for: • Clear and continuous communication between family members and the health care team • Attending to the psychological needs of family members • Cultural competence of providers

12. Trauma-Informed Care • Incorporates an understanding of traumatic stress in each clinical encounter with children and their families. • Minimizes potentially traumatic aspects of medical care • Considers traumatic aspects of: • Child’s experience of illness/injury • Treatment/ Procedures • Hospitalization/Separation from parents • Loss/grieving • Supports adaptive coping based on child family strengths • Screens for indicators of higher risk

14. D-E-F Protocol for Trauma-Informed Care

15. D-E-F Protocol • Health care providers are experts in treating illness, restoring functioning, and saving lives. • After attending to the basics of children’s physical health (the A-B-C’s), providers can promote their patients’ health and recovery by paying attention to the next steps – “D-E-F”. • D-E-F provides a straightforward, reliable method for identifying, preventing and treating traumatic stress responses. • Reduce Distress • Provide Emotional Support • Remember (and involve) the Family

16. Distress

17. How to Assess - Distress Pain: Use hospital’s pediatric pain assessment: Ask Patient: • “How is your pain right now?” • “What was your worst pain?” Fears and Worries: Ask children about fears: • “Sometimes children are scared or upset when something like this happens. Is there anything that has been scary or upsetting to you?” • “What worries you most?” Grief /Loss: Acknowledge intense and conflicting feelings. Ask: • “Anyone else hurt or ill? Any other recent losses?” (damage to home, loss of pet, loss of family member) • “Any personal losses?” (loss of ability, body image, etc.)

18. How to Help - Distress • Provide the child with as much control as possible over the clinical encounter. • The child should understand what is about to happen, and have a say about what is about to happen 2. Actively assess and treat pain. • Have some control over pain management 3. Listen carefully to hear how the child understands what is happening. • Have child explain things back to you to ensure understanding

19. How to Help - Distress, cont. 4. Clarify any misconceptions. • Use words the child can understand 5. Provide reassurance and realistic hope. • Describe what is being done and who is working to help child get better 6. Pay attention to grief and loss. • Use hospital’s bereavement services and grief protocols • Encourage parents to listen to children’s concerns and be open to talking about experience

20. Emotional Support

21. How to Assess - Emotional Support What does your child need now? • Ask parent: “What helps your child cope with upsetting or scary things? • Ask child:“What has been the best thing so far that helps you to feel better?” Who is available to help the child? • Do the parents understand the treatment plan? • Are they able to help calm their child? • Are they able to be with their child for procedures? How can existing supports be mobilized? • Ask parent:“Who can you or your child usually turn to for help or support? Are they aware of what is happening?”

22. How to Help - Emotional Support 1. Encourage parents’ presence: • Encourage parents to be with their child as much as possible during hospital stay and to talk to their child about worries, hopes, etc. • Parents know their child better than anyone and can help staff understand their child’s needs and coping strengths. 2. Empower parents to comfort and help their child: • Help parents understand the illness or injury and treatment plan so that they can give age appropriate explanations to their child. • Encourage parents to use the ways they soothe and calm their child at home.

23. How to Help - Emotional Support 3. Encourage social support & involvement in “normal” activities: • Suggest age appropriate positive activities that fit the child’s medical status. • Promote the child’s appropriate contact with friends, classmates, teachers, etc.

24. F: Remember (and Involve) the FAMILY

25. How to Assess - Family Assess parents’, siblings’ and others’ distress • “Have you or other family members been very upset since this happened?” Gauge family stressors & resources • “Are there other stressors for your family right now?” • “Have you been able to get some sleep? Eat regularly?” Address other needs (beyond medical) • “Are there other worries (money, housing, etc.) that make it especially hard to deal with this right now?”

26. How to Help - Family • Encourage parents’ basic self care. • Encourage parents to get sleep, eat, and take breaks from the hospital. 2. Remember family members’ emotional needs. • Help them to enlist support systems (friends, family, faith community). • If parents or other family members are having a difficult time, use hospital services, consider a referral 3. Be sensitive to resource needs of the family. • Lack of resources can significantly interfere with the child’s recovery. • If problems are identified, utilize psychosocial resources to address them (i.e., housing, finances, insurance, language barriers, immigration status, care of other children).

27. Intervention Models - Medical Traumatic Stress • Prevention and Treatment Model • Stratifies children and families into three levels of intervention, based on early symptoms • Phases of Medical Traumatic Stress Model • Matches potential interventions to different stages of traumatic stress development

29. Prevention Model: Levels of Symptomotology • Universal- Some distress, but most children and families have coping strengths and resources • Targeted- Acute distress or risk factors present; child / family does not appear to have strong coping resources; other concurrent (non-medical) stressors are present • Clinical And Treatment- significant distress, multiple risk factors, few coping strengths, and/or posttraumatic stress symptoms (PTSS)

30. Prevention Model: Levels of Intervention • Universal: Basic support to the widest population of ill and injured children – understand normal reactions and support their inherent competence, resilience and coping strengths. Universal interventions are helpful for most children / families. • Targeted: Early identification of, and intervention with, children and families who have significant risk factors, significant distress, or whose symptoms are interfering with normal functioning and development. • Clinical / Treatment: Identifying and referring children and families with severe distress, impaired functioning, or serious pre-existing issues for mental health assessment / treatment.

31. Universal (Preventive) Interventions • For: children and families are distressed but resilient; who have coping strengths and resources • Help restore a sense of safety for the child and / or family. (Remember: a hospital environment doesn’t always feel safe.) 2. Consider the traumatic aspects of treatment / procedures and a child’s experience of illness or injury.

32. Universal (Preventive) Interventions 3. Reduce unnecessary secondary exposures within the medical environment. (View your environment through a child’s / parent’s eyes.) 4. Encourage and support child’s and family’s help-seeking behaviors. Help them access extended support networks including friends, family, school, community, religious, as well as hospital resources. 5. Create a supportive environment,remembering that children will have a wide spectrum of reactions and different courses and lengths of emotional recovery.

33. Targeted Interventions • For: children and families with acute distress, who have additional risk factors, and/or have few coping strengths and resources • Provideinterventionsand service specific to symptoms. • Monitordistresslevel • Continue use of DEF protocolandtrauma-informedcare • Know when a referral is needed

34. Knowing When a Referral is Needed • Ask your patients (and their parents) about their ongoing reactions and coping strategies. • Listen for ongoing or severe traumatic stress symptoms. • Consider: • Is the child participating in daily activities to the extent possible given their medical condition? • Are stress reactions interfering with treatment adherence? • Are new fears or worries troubling the child or parent?

35. Knowing When a Referral is Needed • Consider a referral for a more thorough evaluation with a mental health professional if traumatic stress reactions: • are severe or prolonged (more than a month) • interfere with treatment adherence / recovery • interfere with returning to normal activities • inhibit the parent’s ability to care for child or care for self

36. Clinical (Treatment) Interventions • For: children and families with significant or worsening distress, posttraumatic stress symptoms, multiple risk factors, and few/no coping strengths or resources • Consult behavioral health specialist for assessment • Refer for further mental health treatment • Effective treatments include: • Trauma-Focused Cognitive-Behavioral Therapy • Short-term Parent-Child Therapy; Family Therapy

38. Phases Model, cont. Phase I: Peri-Trauma • Initial events, or events that are still unfolding: • in the midst of emergency care • during injury event • during diagnosis of a serious illness • Focus on reducing the traumatic aspects of this experience for children - both objective and subjective • Provide anticipatory guidance about what to expect, what’s “normal” and helpful ways of coping

39. Phases Model, cont. Phase II: Early, ongoing, evolving responses • The days and weeks that follow the traumatic event • Focus on promoting adaptive coping, addressing immediate distress • Screen for acute distress and risk factors to determine which children and families might need more support • Practice “watchful waiting” with those less distressed • Help strengthen coping skills • Reframe unhelpful beliefs • Provide referrals as needed for those significantly distressed

40. Phases Model, cont. Phase III: Longer Term Posttraumatic Stress Symptoms (PTSS) • Months or years after a traumatic event, illness or injury • Focus on supporting adaptive coping, detecting persistent stress reactions, and referring for further mental health treatment. • Identify coping needs and promote family and community / religious support

41. Key Intervention Points / Strategies along the Continuum of Care • Some children and families experience traumatic stress at the time of illness or injury • Others experience traumatic stress later during treatment, procedures, rehabilitation, or after hospital discharge • Key intervention points and intervention strategies along the continuum of care include: • Pre-hospital / Emergency Care • Hospital Admission / Inpatient Stay • Pain and Painful Medical Procedures • Planning for Hospital Discharge

42. Key Intervention Strategies: Pre-hospital / Emergency Care • Provide simple explanations to children about what is happening, and especially about what will happen next. • Minimize additional exposure to traumatic elements at the scene or during transport. When possible, try to provide simple explanations or interpretations for these exposures. • Encourage parent presence (if possible), support parents in comforting their child. If parents are not available, you may need to be the support person for the child.

43. Key Intervention Strategies: Pre-hospital / Emergency Care • Normalize reactions and explain that when you have to come to the ER, reactions such as worry, fear, being mad, sad, or numb are common and expected. • Ask about fearsand worries and provide simple explanations for medical procedures. • Talk with the child at his / her eye level and level of comprehension / understanding.

44. Key Intervention Strategies: Hospital Admission / Inpatient Stay • Orient children and families - especially to the sights, sounds, and smells of the hospital, and connect them to supportive resources in the hospital. • Help children and families establish daily routines and behavioral expectations. • Allow child to participate as much as possible in his / her daily care and decision-making. • Recognize parents as experts on their child.

45. Key Intervention Strategies: Hospital Admission / Inpatient Stay • Gauge family distress and other stressors. • Discuss anticipated strain on relationships within the family. • Help families seek out supportfrom extended family members, friends, community, religious organizations. • Identify child and family strengths and help them build on their coping resources.

46. Key Intervention Strategies: Pain / Painful Medical Procedures • Acknowledge and toleratecommon emotional reactions to pain - including anger. • Understand acting out / isolation behavior as an effort to numb responses. • Don’t trivialize or dismiss fears or worries about painful treatment. • Combine pharmacologic and behavioral interventions (e.g. relaxation, distraction) for pain management.

47. Key Intervention Strategies: Pain / Painful Medical Procedures • Help parents accurately estimate their child’s distress. • Discuss with parents ahead of time ways of managing their child’s distress during procedures • Remember that it is often most helpful for parents to provide DISTRACTION, rather than repeated statements of emotional reassurance, during a child’s painful procedure.

48. Key Intervention Strategies: Planning for Hospital Discharge • Support transition to home or other medical care environment by connecting family to supportive resources outside the hospital. • Acknowledge common emotional reactions (fears, worries, sadness, anger) to transitions and new challenges. • Anticipate challenges in returning to the home environment, including family role adjustment.

49. Key Intervention Strategies: Planning for Hospital Discharge • Prepare parents / families for ongoing reactions and feelings, even after treatment ends. • Help families identify coping strategies and resources they will use upon returning home. • Ask parents about what knowledge or skills they need to support caring for their child medically at home.

50. For More Information • Center for Pediatric Traumatic Stress The Children’s Hospital of Philadelphia General website: www.chop.edu/cpts Training website: www.healthcaretoolbox.org Email: cpts@email.chop.edu • National Child Traumatic Stress Network: Website: www.nctsn.org • Pediatric Medical Traumatic Stress Toolkit (online) Website: www.nctsn.org/medtoolkit