Tonight's picture was taken in March of 2009. As you can see I am holding up a huge pretzel. Mattie went through different food cravings. For the most part Mattie only wanted starches, but the type of starch could change week to week. That week.... the food of choice was a big circus pretzel. I literally put a request out to our care community and, lo and behold, pretzels arrived. With the sight of the pretzel, Mattie smiled. I am not sure what I would have done without our support network, because I was just too busy managing Mattie's daily care and needs, that there was no way I could have left the hospital room to meet food or toy requests.
Quote of the day: Hard work spotlights the character of people: some turn up their sleeves, some turn up their noses, and some don't turn up at all. ~ Sam Ewing
Peter sent me the article entitled, Parental Caring Behavior Matters During Cancer Treatment. I attached the link below for you to see. I think Peter and I are on some sort of mission to not only help children with cancer but to prove this is a family disease. When your child gets cancer, to some extent everyone involved in the care also experiences it.
Following the medical model, physicians and hospitals are focused on the PATIENT. Of course with children, come their side kicks..... the parents. However, the medical system is NOT designed to manage and treat the entire system. In fact, at times the family can appear to get in the way, especially with doctors who do not like to be questioned or challenged. I think medical personnel have some, and I emphasize SOME, understanding for how scary procedures and treatment can be for the child. But the majority of providers do not take into account the impact of all of this on the parent.
Which may be why both Peter and I are intrigued by cancer studies that involve parents. The article I read today focused upon parent non-verbal behavior. In fact until this study, parents’ nonverbal behaviors have been rarely studied in relation to childhood cancer care. This research can expand parenting roles clinically in cancer treatment–related procedures (blood draws, scans, port access procedures, etc). Which actually is necessary, since parents pay a crucial role in care and it is vital that the medical team embrace this fact. In addition, such work can encourage nurses to develop educational interventions that aim to advocate for “caring” parents, in order to decrease the negative effects of invasive procedures on the psychological health of both child and parents.
Here are some key highlights of the study:
- Children often report more pain and distress due to procedures than from the cancer itself. Among cancer survivors, prior experiences with distressing procedures can lead to avoiding both regular primary care and monitoring for adverse effects of cancer therapies.
- P-CaReSS is a promising tool for evaluating parental verbal, nonverbal, and emotional behaviors during cancer-related painful procedures. This tool can help to further understand how parental caring verbal and nonverbal behaviors impact children’s experiences.
- Children were found to be significantly less likely to display behavioral (eg., kicking and escaping) and verbal distress (eg., asking for help and screaming) following parental caring behaviors, especially the rarely studied nonverbal behaviors (eg., eye contact, distance close enough to touch, and supporting/allowing).
- If a child was already upset during the medical procedure, parental caring behaviors (eg., eye contact and supporting/ allowing) reduced child distress.
The results of this study do not surprise me in the least! I learned the power of nonverbals first hand with Mattie. Mattie was asked to do the impossible, practically every day in the hospital. Once exposed to one fear (for Mattie his initial fear was scanning), then all subsequent tasks he was asked to do led or triggered a fear response. Mattie lived in a hyperalert state and even basic medical tasks could send him right over the edge. Which was why Mattie had to be sedated for scanning. No amount of talking, rationalization, or comfort was going to help him. But I learned when under great stress and fear, TALKING, doesn't help. Hearing someone tell you.... it's okay or everything will be alright, actually makes matters worse. I understood that for Mattie, because it is also true for me. Hearing words for me during times of crisis make me more anxious. Yet non-verbals such as eye contact and touch can truly perform miracles. Which maybe why as Mattie's treatment continued on, his level of clinginess with me increased significantly. He wanted to have my attention constantly and I could never be far, unless he was VERY distracted in an activity.
Yet medical and psychosocial professionals DO NOT always understand this clinginess! In fact, they view it as something wrong. Which it isn't, because if you really stop to think about what we ask children with cancer to undergo, wouldn't you also need comfort and physical closeness from someone you trust? Which is why studies that highlight the importance of parents are so crucial to overall medical care! Simply said, when you empower the parent to help the child, it psychosocially helps the child and the parent.
Read the article:
http://www.oncnursingnews.com/web-exclusives/parental-caring-behavior-matters-during-cancer-treatmentrelated-procedures-
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