Tonight's picture was taken in March of 2009. Mattie was home between treatments and as you can see he wanted to go on our deck and in his sandbox. Due to all his chemo treatments, Mattie had close to no immunity and he easily got sick. Regardless of what we did, Mattie always became neutropenic. It was a bi-product of each chemo infusions. Neutropenia is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. Given that Mattie was going to get sick anyway, I felt it was important for Mattie to be able to be a child, and not curtail things he wanted to do. Within reason of course. So when Mattie wanted to go outside, we bundled him up and Peter even brought a portable heater outside, aimed at Mattie. What you can't tell however, was that Mattie couldn't walk to the sandbox and put himself inside of it. As a result of all of his surgeries Mattie coped with massive disabilities that prevented him from functioning independently. Given all of this..... look at that smile!
Quote of the day: Coming together is a beginning. Keeping together is progress. Working together is success. ~ Henry Ford
I think Henry Ford was absolutely correct! People can come together, but that doesn't equate to teamwork or success. As the simple act of coming together is just step one in the process. I liken Ford's analogy for success to Mattie Miracle, specifically in regard to our participation with psychosocial researchers.
In 2012, Mattie Miracle hosted the first ever psychosocial symposium on childhood cancer on Capitol Hill. We had the opportunity to meet and work with four leading researchers who ran scientific panel presentations throughout the symposium. I deem this as coming together. However, it is the leadership we have supplied since 2012, that keeps us coming and working together.
For the past five years, we have been working together for a common goal.... to create, publish, and get endorsed psychosocial standards of care for children with cancer. We have accomplished ALL of that together, but because we are a solid team now, we continue to push forward trying to strategize how we are going to get the Standards implemented. A good way to begin this push is with subsequent research. Research aimed at assessing who is supplying psychosocial care to children and families at treatment sites around the country and also answering implementation issues and barriers that could be preventing access to this much needed care.
The article's abstract:
In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included.
Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.
To read this article, go to:
http://www.mattiemiracle.com/implementation
1 comment:
I believe in Mattie Miracle. I believe more & more understanding will occur that medicine alone is not the answer to helping the whole child who is diagnosed with Cancer as well as their family. While many hospital, outpatient centers believe they are effectively making a difference in the area of Psychosocial support through Social Workers, Child Life Specialists, & Art therapy, this support doesn't cover all the needs of the child or family. Nor does it cover every child. While it is only my opinion, I saw many holes in the care received and an inconsistent attention to very crucial needs that needed attention more often then they received. These professionals need the guidance of the STANDARDS and a bigger commitment to the need of Psychosocial support, if affectiveness is to be achieved. No child is the same, even with a similar diagnosis. No child's needs are the same. Each child & their family needs their Psychosocial Team to know them as their Medical Team does. A child diagnosed with Cancer is NOT a cancer kid. This child had a life before Cancer entered their life. This Child will always be much more than their diagnosis.
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