Friday, November 1, 2019

Friday, November 1, 2019

Tonight's picture was taken on Halloween of 2008, Mattie's last Halloween with us. Each year at the hospital, a non-profit group brings in costumes for the children. Mattie got to look at all the costumes a day before the other children. We will always be grateful to Mattie's art therapists and child life specialist, as they understood how fragile Mattie was. He had just had his first limb salvaging surgery and his right arm was bandaged. Mattie walked gingerly and was afraid that others would injure him in some way while moving around. So having a preview of the costumes was a gift. In a quiet environment, Mattie inspected all the costumes and purposefully picked this one. As a mummy, no one could tell that his arm was bandaged or that he had cancer. Mattie had two trick or treat events that year, both in the hospital and with his friend Zachary in Alexandria, VA. 


Quote of the day: A kind gesture can reach a wound that only compassion can heal. ~ Steve Maraboli


The Mattie Miracle Candy Drive began today. It was a slow start, but I know by tomorrow, the candy will begin rolling in. It is funny every year I wonder.... will people donate candy? But by the end of the drive, my thought is...... where on earth did all of this candy come from?

I came across an article in the Journal of Pediatric Oncology Nursing (in which I copied the abstract below), entitled Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment. The title alone caught my attention and I feel this is an article worth reading. In all reality not much data is out there guiding healthcare providers and their communication with parents. I think this article highlights the significant problem parents face, because how, when, where, and by whom information is communicated to us MATTERS. 

I will always remember December 5, 2008. On that day, Mattie had a CT scan of his lungs. Later in the day, I saw the WHOLE medical team walk down the hallway toward Mattie's room. I literally knew the results before they even spoke one word to us. Having the whole team present had to mean that Mattie's cancer metastasized to his lungs! I can still recall that Peter and I were brought into a separate room in the unit, while Linda (Mattie's child life specialist) stayed in Mattie's room with him. Of course they then told us what I had already intuitively gathered.... Mattie had four lung tumors. It was a terrible way to learn about Mattie's metastasis and if that wasn't bad enough some members of the team asked if I wanted to pray or go to the hospital chapel. That also set me off! Needless to say, I am not quiet! I later let them have it and told them I felt set up with the whole team marching down the hallway, staring at us as they gave us the new! I then told them moving forward WE (Peter and I) needed some control over how this information was conveyed to us. 

Therefore, when I read the article by Lauren Smith, I felt like I could have been part of her focus group! Because I would have given her similar feedback.... health care providers do need training in bedside manner and how they deliver information to families. Not that this will change the outcome of the situation, but it absolutely impacts our quality of life. After all, Mattie has been gone for ten years now, but I still remember December 5, 2008 like it were yesterday. To me that is a qualify of life issue!

Parent and Child Preferences and Styles of Communication About Cancer Diagnoses and Treatment. (Lauren Smith)

Communication challenges frequently occur among families and health care providers of children with life-threatening conditions. These obstacles compound concerns related to children's diagnoses and treatment, the family's quality of life, and delivery of care. Developmentally appropriate and validated methods of addressing the communication preferences of families with chronically ill children are limited. This study used six focus groups to determine child and parent preferences and styles of communication centering on new diagnoses and changes in prognosis. Hypothetical situations were used to minimize feelings of self-consciousness among school-aged and adolescent participants. Qualitative analyses (interrater reliability 75%) of child and parent responses revealed 3 categories and 11 subcategories or themes. The category of Characteristics of Communication Exchange included (1) how to tell, (2) who should tell, (3) when to tell, (4) who should be included, and (5) what to tell. The Knowledge and Understanding category included themes of (1) side effects of treatment, (2) what children understand, and (3) questions when being diagnosed. The category of Feelings and Emotions included themes of (1) feelings about changes in prognosis, (2) children's feelings on being informed, and (3) coping and emotional regulation. Results reveal a need for developmentally appropriate, evidence-based education to inform parents on how, what, and when to communicate information concerning their child's disease, as well as instructions around facilitating those discussions. Moreover, a need for professional education and training programs for providers is demonstrated by some parental dissatisfaction with bedside manner and disclosure of information. The data collected from this study lay a foundation for future research in communication as a principal factor in quality of life for pediatric patients and their families.