Five Things: Dedicated to World AIDS Day

Today is World AIDS Day, and while immense progress has been made in de-stigmatizing, treating, and managing this disease, the number of people infected in the US is upwards of 1.2 million, and globally, that number is 34 million. 

Today’s Five Things is dedicated to the men, women, and children battling this illness personally, and to all of the healthcare workers, epidemiologists, child life specialists, scientists, philanthropists, researchers, and all others out there working tirelessly to eradicate this scourge of a disease, once and for all.

Five Facts About AIDS

1. 25% of new HIV infections in the US are among those aged 13-24 years.

2. One in six people living with HIV do not know that they are infected, and can unknowingly pass along the virus.

3. Black and African-American people are disproportionately affected by HIV/AIDS diagnoses.  (Let’s be clear here– in this country, to our shame, race is inextricably linked to socioeconomic status, and many of our black and African neighbors and fellow citizens are not able to afford the necessary treatments and medical care that would help to decrease their HIV/AIDS infection rate.  Access to education is a compounding factor, but one that I will leave to other pens for today at least.)

4. Gay and bisexual men continue to be the group most severely affected by HIV and AIDS.  While other groups’ infection rates have dropped over the past few years, this group’s infection rate has climbed 12% since 2008, and the greatest number of new infections in this group is among young black and African-American males, ages 13-24.

5. There are still dangerous and rampant myths spread about HIV and AIDS worldwide, including, but not limited to: that mosquitoes spread AIDS; that intercourse with a virgin will cure AIDS, which has led to countless rapes and further infection; and that HIV can be spread through casual contact with an infected person.  We have better access to information and the means to spread it than ever before in humankind’s history– let’s harness it and shout the truth from the rooftops!

Five Things You Can Do to Help

1. Get tested.  Encourage friends and family members to get tested.  Always practice safe sex.

2. Support drug treatment programs, and support needle exchanges.  No healthy person likes the idea of intravenous drug use, or the idea of encouraging it, but it’s happening– let’s not compound the already significant problem with spreading a fatal disease.

3. Inform yourself about this illness, so that you can dispel myths when you hear them.

4. Support HIV/AIDS treatment campaigns like “HIV Treatment Works,” “We Can Stop HIV One Conversation at a Time,” and “Start Talking.”  (All resources listed at bottom of page.)

5. Support legislation that empowers everyone to take charge of their health and education– that gives them access to health care, birth control options, necessary medication, drug treatment, and critical health education.  Have important conversations to promote these ideas.

As always, thanks for reading!

Resources

1. http://www.aids.gov/

2. http://www.amsa.org/

3. http://www.avert.org/

4. http://www.aids.gov/federal-resources/campaigns/

5 Things

Emily Schuman, of “Cupcakes and Cashmere,” has a series on her blog that I like very much- the concept is simple, just five things that caught her eye during the week.  I’m going to adopt it, and post five things– five ideas, or resources, or pieces of inspiration that I find and want to share with you!

Five Things on November 17

An uplifting and inspiring music video from Akron Children’s Hospital 

PBS Kids rounded up some of the best books on adoption 

A teacher writes an open letter to parents who worry about “That Kid” in the classroom (tears ahead!) 

Be the Match reminds us why it’s so important to encourage a diverse donor registry 

An article on how virtual reality can help reduce pain 

Enjoy!

Pain, Part 3: Responding to Pain

Retrieved from http://www.toyourhealth.com/common/viewphoto.php?id=13126

Thanks for tuning in again for part three in the series on pediatric pain!  This week, we’re looking at some ways to respond when children are in pain.

How many times have you been in the following scenario?  You’re feeling upset– maybe in a disagreement with a friend, maybe a family member is in trouble, maybe work pressures are getting the best of you– and when you go to talk to someone about how sad and anxious you’re feeling, that person says these dreaded words: “You’re overreacting.”

It’s an infuriating response!  Not only because you didn’t receive the comfort and care that you needed and hoped for, but because your feelings were dismissed as irrelevant. 

Similarly, when anyone, especially a child, experiences pain, the most responsible and responsive action to take is to clearly and empathically acknowledge it.  How much less frustrating would it have been to hear from your friend, “Ugh– sounds like you’re having a really hard week.”?

Here are the steps that have been demonstrated to be effective when responding to children in pain:

1. Acknowledge the pain, then offer practical steps to begin relieving it.  Let’s take a case I had back in New York (names and identifying details changed): a seven-year-old boy, Seamus, is brought into the emergency department with severe lacerations to both arms, due to a skateboarding accident.  He is crying and frightened– the paramedics have told him not to look at his injuries, and have been covering his eyes.  We can say, “That looks like it’s hurting you a lot!  You’re going to feel some cool water on your arms now, and that will help it hurt a little less.  Then we’re going to give you some medicine that will make it hurt a LOT less.” 

2. Stay with the child until the pain has been relieved.  Pain is isolating, and can be very frightening.  Researchers tell us that children have consistently reported that during a painful episode, the most helpful thing for them was having a parent present.  If you are not the child’s parent, that’s OK too– any amount of caring attention can ease the experience for the child and lessen their pain. 

3. Whenever possible, support the child in taking action to ease their own pain, through deep breathing, guided imagery, or therapeutic touch.  Being partially responsible for reducing their pain can make a child feel less helpless.  Let’s go back to Seamus– we can say, “I know that your arms hurt and being here is scary.  Here’s something we can try, to see if it will make you start feeling better– imagine that your belly is a balloon.  Breathe in, and try to make that balloon as big as it can get– now blow out, and imagine the balloon getting very very small.  Now breathe in again and make the balloon get even bigger this time!”

4. Consistently update the child with the positive steps being taken to address their pain.  To Seamus, we can say, “the nurse is giving you some medicine right now to make your arms hurt less.  You will feel the hurting go away quickly– I’m going to count now, and by the time I get to the number 15, the hurt should be gone.”  (In this particular case, the patient was getting a very potent analgesic through an IV line that we were certain would take effect almost instantaneously.)

5. Manage the anxiety around the child.  Being surrounded by fear and anxiety will heighten the child’s fear and anxiety, so take steps to surround the child with calm, positive presences.  If the child’s parents are in the room and are soothing to the child, that’s wonderful!  However, some parents, understandably, are unable to see their child in pain and not get upset– as difficult as it is, it may be better in some cases, for both parent and child, to separate the two until the pain is under control.  In Seamus’ case, while his mother was supportive and loving, she couldn’t stand the sight of blood, and she fainted, nearly getting a head injury.  This was frightening to Seamus, and gave us another patient, diverting some of our resources away from Seamus and other patients.  It’s perfectly OK to say to a parent, “This must be so scary and difficult for you.  I know you want to take care of your son, and I want to help you do that– how are you, around blood?  Do you ever get dizzy or light-headed when you or someone else is injured?”  If they say yes, some suggestions can be that they sit next to their child (whenever realistically possible), or wait outside for a brief time.  If they are waiting outside, it can be helpful to have a member of the team with them, explaining what is happening in the treatment room, to mitigate some of the parent’s anxiety.

For young children, I don’t like using the word “pain.”  I’ve found that many kids don’t use that word (how many four-year-olds scrape their knees and tell you that they’re having a lot of pain?).  So I use the word “hurt” a lot, but I’m sure there are other words out there that would work too!

What are your tips and tricks for responding to children in pain?

Resources

Kuttner, L. (2004). A Child in Pain.  Hartley & Marks, Vancouver.

Pain Prevention, Part One: What is Pain?

Retrieved from painmanagementlosangeles.com on October 15, 2014

Welcome to Part One of a five-part series on pain- the prevention of which is a particular interest of mine.  Over the next few weeks, I’ll be breaking down this massive topic into five sections:

What is pain?

Assessing pain

Responding to and treating pain

Appropriate pain language and common misconceptions

Exciting new advancements in pain prevention

And don’t worry- I’ll only post one section per week, and will put up other fun things in between!

(Note: I am not a medical expert, merely an interested and avid researcher on the topic of pain, specifically pediatric pain and its prevention.  All resources are listed at the end of the article.)

What is pain?

How many of you have “shoes-off” households?  Well, I would too, except that my husband insists on wearing shoes in the house, after too many stubbed toes led to a mortal dread of foot injuries.  Sure, his fear is probably disproportionate to the number of times he’s actually stubbed his toe inside the house, but you try telling him that….

What’s illustrative about this example, to me, is the critical interaction of fear/ anxiety and the experience of pain.  Even an adult has a difficult time separating the two- and it’s much more complicated for children!

How does pain work?

Your phone rings in your pocket, and you reach for it immediately.  You lean down to pat your dog, and you notice that there is a clump of hair that needs to be brushed out.  You stub your toe and instantly begin cursing and instituting a lifelong policy of shoes-on-in-the-house. 

All of this is possible because of the interaction between your body and your brain- or, more specifically, your peripheral nervous system and your central nervous system.  When your body experiences anything, the brain is hard at work interpreting it, using sensory data, like smell, taste, and touch; but also using emotional information, memory, and cognitive processes.  Therefore, the context that the brain can establish for a painful stimulus is critical to the experience of pain itself.  Here’s an example:

You are walking in an unfamiliar place.  All of a sudden, a group of people, dressed in strange-looking clothes, grab you and hold you down.  They shout things at you.  Before you know it, you’re being stabbed repeatedly with something small and sharp.

You’d call the police after that, wouldn’t you?  And you’d expect your attackers to be arrested for assault and battery!  But let’s put the same scenario in a new light:

You are a parent to a young child who has had a fever and diarrhea for two days.  You bring your child to the emergency department, where the doctor insists on an IV for rehydration.  The nurses and techs hold your child’s body still, blocking his eyes, and saying, “Don’t watch!  It doesn’t hurt a bit!” while the doctor tries to insert the IV.  Because your child is dehydrated and panicked, his veins are hard to visualize, and it takes multiple sticks before the IV cannula is inserted and the fluids can be started.  By this point, your child is inconsolable.

Sound similar?

Context is an enormous part of the pain experience.  When an adult goes to the hospital, she is more likely to have an easier time with an IV insertion because she understands what the staff is doing, and that it is in her best interests.  Her pain is lessened because her fear is lessened by an understanding of the context. 

The nervous system is a dynamic system of ongoing feedback and adjustment.  During childhood, when the body and brain are still developing, the nervous system tends to be more highly sensitive to all sorts of input, both internal (emotions, reactions) and external (sensations, environment).  Pain, therefore, can have a stronger influence on a child’s quickly changing nervous system than it tends to on an adult’s.  Children also have less experience contextualizing pain, so they are less able to understand it when it happens.

The Pain Pathway

Dominos falling (retrieved from thewoodmanseeproject on October 15, 2014)

You’ve knocked over a chain of dominos, right?  Just a light tap on that first one, and all the domino tiles fall over, one after another.  Imagine that your nervous system works a little like that- for example, let’s say you stub your toe.  The nerves in your toe begin the chain reaction, passing the signal of injury from peripheral nerve to peripheral nerve until the signal reaches the dorsal horn of the spinal cord, effectively, the gateway to the central nervous system.  The signal passes all the way up the spine and into the brain stem and cerebral cortex, which act to interpret the signal as pain, and respond to it.

Your brain will draw on memories of previous injuries to help you process the injury and determine how much of a threat it is.  Your current stress level will impact how much pain your brain thinks your toe is in.  You will start immediately problem-solving, reaching for an ice pack or rubbing your toe to relieve the painful throbbing.  If, however, your stress level is low and your brain determines that the stubbed toe is not a big threat, it will activate what’s called an inhibitory control system- the brain will signal the body, via the spinal cord, to release endorphins (pain-relieving substances), along with serotonin and norepinephrine.  This release will begin to relieve the pain so you can begin cursing the bathtub that came out of nowhere to stub your toe.

Thanks for reading!  Please feel free to ask questions in the comment section, and stay tuned for more!

Resources

Kuttner, L. (2004). A Child in Pain. Hartley & Marks: Vancouver, Canada.

Chambers, C.  (2012).  Lecture: “Psychological approaches for procedural pain management in children.”  Dalhousie University and IWK Health Centre; Centre for Pediatric Pain Research.  Lecture attended September 12, 2012.

Loeser, J. Melzack, R.  Pain: an overview.  The Lancet 1999: 353: 1607-1609.

Taddio, A. Katz, J.  The effects of early pain experience in neonates on pain responses in infancy and childhood.  Pediatric Drugs 2005: 7 (4): 245-257.

Grand Rounds for Everyone!!

I was one of those kids who always got super excited for the start of the school year- new pencil case, new notebooks, and best of all: a brand new planner! This dorky excitement never stopped- someone in graduate school (who ended up becoming a very good friend), tells the story of seeing my ridiculously tidy planner from a nearby desk and immediately becoming curious about this anal-retentive weirdo, planning out her reading periods (and, yes, color-coding them by subject) for the next four weeks. What can I say? I really loved school…

Maybe this is one of the reasons I also loved working in a hospital- there was always something new to learn. And my absolute favorite part of medical culture is Grand Rounds- every week, a lecture on a new topic, and everyone, from the chief of the department to the medical students to social work to child life to nursing, comes to learn! I love it!

I’m sure that I’m not alone here- so to that end, I wanted to post one of my favorite free resources: Pediatric Grand Rounds, from the University of Arizona. There’s a new one every week, and they’re all videos (complete with Power Point presentations from each) available through iTunes U. Some of the ones I’ve watched recently and learned a ton from: “The Humble VSD” and “Sickle Cell: Mind the Lungs!”

I highly recommend this resource to everyone (especially all the rest of you school-lovers)!

Here is the link- check it out!

https://itunes.apple.com/us/itunes-u/pediatric-grand-rounds/id426185044?mt=10

Welcome to My Country

One of the customs I never quite mastered while traveling in Europe is the cheek-kiss greeting. It’s not one kiss, and sometimes, it’s not even two kisses- the cheek to kiss first varies, depending on your gender and marital status (if I remember correctly)- and as if that isn’t confusing enough, someone told me once that if you start on the incorrect cheek, it can be interpreted as a proposition. Utterly nerve-wracking.

Besides driving on the left side of the road (and the right side of the car), it is that custom that has always been a vivid reminder that I am a visitor in a foreign country. My American understanding of social norms and manners is not valid here- there are a different set of rules at play, and keeping track of them all can feel overwhelming.

With a diagnosis of chronic illness comes a much less pleasant culture shock- this is uncharted territory for the patient and family, and the landscape in which they live is irrevocably altered. They have become inhabitants of a new world, and may feel like visitors in their former one. I think it is this subtle shift that is one of the most difficult things for a patient’s friends and extended family to recognize and understand. On the one hand, they may not want to encourage the patient to allow their lives to revolve around illness and treatment, and want to keep their lives as normal as possible (understandable!). Yet on the other, a lack of recognition about this drastic change may leave a patient vulnerable to feelings of isolation and misunderstanding.

How can we, as child life specialists and family advocates, help others understand what it can feel like to move from the land of the healthy to the land of the chronically ill?

But You Don’t Look Sick!

Christine Miserandino writes about her life and her ongoing battle with lupus on the blog “But You Don’t Look Sick.” One of her articles, “The Spoon Theory,” does a fantastic job, I think, of illustrating what it may feel like to live with a chronic illness. In it, she writes:

As I went to take some of my medicine with a snack as I usually did, she [Christine’s friend] watched me with an awkward kind of stare, instead of continuing the conversation. She then asked me out of the blue what it felt like to have Lupus and be sick. I was shocked not only because she asked the random question, but also because I assumed she knew all there was to know about Lupus. She came to doctors with me, she saw me walk with a cane, and throw up in the bathroom. She had seen me cry in pain, what else was there to know?

Miserandino goes on to explain that she collected a handful of spoons (they were in a diner), and handed them to her friend, explaining that one of the things that comes with a chronic illness is the inability to make everyday choices without consciously thinking through every step involved. To illustrate this concept, she used spoons, and asked her friend to verbally plan out the following day- with every activity, Miserandino would take one spoon away:

I asked her to list off the tasks of her day, including the most simple. As, she rattled off daily chores, or just fun things to do; I explained how each one would cost her a spoon. When she jumped right into getting ready for work as her first task of the morning, I cut her off and took away a spoon. I practically jumped down her throat. I said ” No! You don’t just get up. You have to crack open your eyes, and then realize you are late. You didn’t sleep well the night before. You have to crawl out of bed, and then you have to make yourself something to eat before you can do anything else, because if you don’t, you can’t take your medicine, and if you don’t take your medicine you might as well give up all your spoons for today and tomorrow too.” I quickly took away a spoon and she realized she hasn’t even gotten dressed yet. Showering cost her spoon, just for washing her hair and shaving her legs. Reaching high and low that early in the morning could actually cost more than one spoon, but I figured I would give her a break; I didn’t want to scare her right away. Getting dressed was worth another spoon. I stopped her and broke down every task to show her how every little detail needs to be thought about. You cannot simply just throw clothes on when you are sick. I explained that I have to see what clothes I can physically put on, if my hands hurt that day, buttons are out of the question. If I have bruises that day, I need to wear long sleeves, and if I have a fever I need a sweater to stay warm, and so on. If my hair is falling out I need to spend more time to look presentable, and then you need to factor in another five minutes for feeling badly that it took you two hours to do all this.

In child life, we’re always looking for concrete ways to help children and families understand difficult concepts, and I was struck by what a wonderful, concrete way this is to illustrate life with a chronic illness.

What do you think? What would you use to “take away” parts of day-to-day life to show the losses that occur with chronic illness?

References

Miserandino, C. (2010). The Spoon Theory. Retrieved from http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/