Friday, February 12, 2021

Friday, February 12, 2021

Tonight's picture was taken in February of 2009. That day Mattie surprised me with a box of Valentine gifts! He had been working several hours in the child life playroom with his art therapists. Then I was called into the room and one of Mattie's therapists started snapping photos of us. To me all the photos were priceless and one of them became my all time favorite. 

Quote of the day: Today's coronavirus update from Johns Hopkins.

• Number of people diagnosed with the virus: 27,477,820
• Number of people who died from the virus: 480,446

Several months ago, Peter and I were interviewed by a research team, who was creating a training video for practitioners learning to use the Psychosocial Assessment Tool (PAT).  The PAT is a brief parent report screener of psychosocial risk in pediatric health. Peter and I are passionate about supporting the use of the PAT at treatment centers around the country because this would help to achieve implementation of the first Standard of the Psychosocial Standards of Care (Mattie Miracle's vision). The first Standard states that children and families should receive systematic assessments of their psychosocial health care needs.

This week, we had the opportunity to see 90 minutes of the training webinar. What caught our attention was that we were featured 7 times within the webinar. This implies to me that the content we were sharing was meaningful and helped convey the importance of using this evidence based instrument for clinicians. 

In this portion of the video, I was making a case for why its important to use a screening instrument when assessing children with cancer and their families. 

Unfortunately when a child is diagnosed with cancer, the main focus is the medicine. I remember receiving a spiral notebook with Mattie's treatment plan during the first week of diagnosis. Yet NO WHERE in this plan was psychosocial care or needs mentioned or even considered. The medical treatment for osteosarcoma is barbaric, since every infected bone needs to be removed from the body. One has to think how could anyone cope with such a treatment without a lot of support? Despite the obvious answer to this question, psychosocial care was considered ancillary or an after thought in Mattie's care. What Mattie's journey showed us is that psychosocial care must be considered alongside medical care and the number one way to determine what types of support children and families need is by conducting an assessment first and foremost (like the PAT).