We are a Launching a new program
to address medical trauma
Trauma-informed practices are not necessarily incorporated into the medical settings where children access care. Providing trauma-informed pediatric care means that healthcare professionals bring a basic understanding of these key points about traumatic stress into their encounters with children and families. Trauma-informed care can promote optimal health outcomes and reduce problematic psychological sequelae. Since its not in place - caregivers, patients, and providers can advocate and educate their peers on how to reduce medical trauma.
Important reminders about children’s responses to medical events:
· Many parts of the experience of illness, injury, and medical treatment have the potential to be traumatic for children of all ages.
· Children’s traumatic stress responses to illness and injury can become persistent and problematic. Children may have upsetting thoughts they cannot stop, may try to avoid things that remind them of difficult parts of their experience, and may be irritable or have trouble sleeping. These responses can impact adherence to medical care, health outcomes, and quality of life.
· Parents and siblings can also be affected. Some parents become hypervigilant for signs and symptoms the illness has returned or over their child’s safety. Siblings may worry in private about their brother or sister.
· Culture can impact each child’s and family’s response to illness, injury, and medical treatment, as well as their response to adversity and trauma.
· For pediatric patients, the risk of ongoing traumatic stress reactions is related to perception of life threat, pain, acute emotional distress in the child or parents, and by prior traumatic exposure (i.e. before this medical event).
· Many of these risk factors can be modified or influenced during the process of pediatric care.
creating change by creating community
One of the things my daughters' illnesses taught me - was to be the change I wanted to see.
So... I started creating the resources I wanted and needed and sharing them with other caregivers. I co-facilitate online parent groups, I mentor families and caregivers, I have providers sending me families for peer coaching, I share best-practices with providers and caregivers, I teach caregiving skills, and I share information - a LOT of information.
Its helpful to look at the data that shows that at least one in four of us who are parenting kids with special health needs -will spend at LEAST 11-hours a week in caregiving related tasks. More if we have public insurance or kids with rare or complex diseases. Basically, its a part-time job without a training manual
I think of caregiver resources in a few ways -
Its helped me to realize in addition to loving my children and doing all the usual mom-stuff - parenting a child with a chronic illness requires that I learn new skills and put together a toolbox.
Other initiatives and strategies for caregiver support
- Advocates Not Advesaries
- Caregiver Navigation Hub
- Caregiver-to-Caregiver Navigator Program
- Connecting to Resources
- Finding Information
HERE are some of the tools and trainings I have put together:
- Creating a framework for wellness with a chronic illness
- Making impossible and hard decisions decisions
- Deep listening- how to hear the hard stuff from your kid and their providers
- Talking (playing and creating) with your child about her illness
- Setting goals for what your kid wants and needs
- Keeping the magic of childhood alive during the 'yuck' of "all of this"
- "Eating the Cake First" - keeping your kid and her unique needs at the center of all of "it'
- Know your rights
- Dissecting the anatomy of a medical visit - how to get what you need to help your child
- Knowing your points of contact in the system (who does what)
- Circling the wagons - creating a circle of care using a care map
- Calendaring and Coordinating
- Getting support for you and the other adult caregivers
- Unpacking and onboarding for clinical trials
- Tools for change- binders, calendars, etc.
- Care coordination tools
- Information on helping my child through procedures, taking medicine, and being a kid in a medical setting
- Feel good kits for kids and families - ideas for how to get through endless outpatient visits and hospital stays
- Packing lists - kind of like having the "birth bag" ready by the door
- Hospital plan - again like a birth plan but kind of different
- Patient bill of rights and what that means in pediatrics
- How to get medical records and information from behind the EHR summaries you see
- "No" is just the beginning of the conversation -how to appeal denials by insurance companies and public health care program
- Finding medical allies to build your dream team
- Crash course in case coordination
- Information on how kid patients are different
skills that I have been sharing with other parents
- How to find and get into a clinical trial
- Clinical Trial Onboarding
- Use of complimentary and integrative medicine for pain management and symptom
- Information on integrating care - how to discern snake oil from solutions
- How to do a literature review about your kid's illness
- Connecting with other people who have walked in the same or similar shoes
- Information on rare or unusual pediatric illnesses
- How to research and evidence about your child's prognosis, treatment, and diagnostic procedures
- Where to find medical research on "main stream" and complimentary therapies
- Tools and frameworks for dealing with schools, family, friends, etc.