Tonight's picture was taken in March of 2009. Sitting next to Mattie is Linda, Mattie's child life specialist. Linda was a God sent to Mattie and our entire family, which is one of the reasons I was adamant to establish the Mattie Miracle Child Life Program Fund at the Hospital. That day, there was a ribbon cutting ceremony to officially launch the opening of the child life playroom. Linda asked Mattie if he would like to cut the ribbon at the ceremony. Naturally Mattie said YES! Linda knew Mattie thrived on responsibility.
Quote of the day: I glanced out the window at the signs of spring. The sky was almost blue, the trees were almost budding, the sun was almost bright. ~ Millard Kaufman
This was my morning view. I had Sunny on the couch with me and Indie on the floor trying to look out the window. This position did not last long for any of us, because as soon as I finished my cereal, we were all up and about.
I did many things today, but one of them involved critiquing the work of a college class in Canada. Mattie Miracle is working with a university in Canada this semester that has adopted us for a community service project. This psychology class is trying to summarize the Psychosocial Standards of Care. There are 15 standards and they are creating two versions..... a summary of each standard for families and a summary of each standard for health care professionals. I have to say the summaries for health care professionals was easier to read and follow than the summaries for families.
I would like to think that one doesn't have to live through a childhood cancer experience to have certain insights, but in all reality that may not be fair. Everything about childhood cancer is like being dumped into a foreign culture and you have to learn to navigate it on your own. So in essence there are things you could never know if you haven't lived them! In any case, the overall issue I had with what I was reading was the fact that students interpreted the standards as things families should be doing. For examples, families should talk openly to medical providers, that families should reach out to their child's oncologist after the death, etc. Needless to say as I was reading this, I had a very visceral reaction to it because the standards were not designed to be punitive to families nor to put the onus on them to identify their psychosocial issues and to provide the care. The purpose of the standards is to empower families so that they feel comfortable in identifying and addressing their child's and their own psychosocial needs and to know that treatment sites can provide services and interventions to help. In a way the standards are like an evidence based awareness and advocacy campaign for families and yet that wasn't how they were interpreted by the students. So fortunately the class sought my feedback along the way because I wouldn't have wanted to see this at the end of the semester.
1 comment:
Vicki,
I might have had to be pulled to get up and get going after seeing how cozy, Sunny & Indie looked. I really admire your walking. I know now you have Sunny but even before Sunny, you were walking, posting pictures of beautiful sites. The Cherry Blossom trees are confused but they all show what we can look forward to seeing shortly..
It seems a good project to separate Providers from families in their interpretation of the Standards of Care! I agree that the onus of communication, knowing how to navigate it, should not be on families. Most people, not having first hand experience of their child having cancer, are limited in understanding. Of course, this is my own opinion and certainly many people think, they know. But this heartache can't be imagined. The first step in providing support to a friend whose child has Cancer, is to acknowledge, I don't know what this is feels like. To me The Standards of Psychosocial Care should help alleviate parents from having to search & search for ways to help their child on another equally important part of treatment!
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