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Autism, Parenting

Growing up with an autistic sibling: “My sister has a little cup”

Growing up with an autistic sibling: "My sister has a little cup"

It was the photo that first draw my attention: the big sister and little sister, with their bed-head hair and pink-and-purple pajamas, hugging each other happily. It was like a scene straight out of my house, and I’m a sucker for stories about sisters – so I began reading. The Huffington Post piece was, indeed about two close, loving little siblings – but, more specifically, about the writer-mom’s concerns over how her youngest daughter’s autism has affected her daughter Phaedra.

Neither of my girls has autism, but Janel Mills is such a gifted writer (and her older daughter, with her maternal, sensitive ways, reminded me so much of mine) that it wasn’t difficult to feel what it would be like in this mother’s shoes. And this portion of the story, with Mills’ beautiful, simple description of what was going on in her younger daughter’s mind, brought me to tears:

One day, as we were driving to my mom’s house, Bella started having a full-blast, take-it-to-eleven, screeching meltdown because she dropped a toy somewhere in the car and neither she nor I could reach it. Phaedra hates the car meltdowns most of all because she can’t go anywhere to escape them. Listening to Bella melt down hurts her physically (the screams are LOUD) and emotionally (she’s a sensitive soul). When we finally pulled into my mom’s driveway and I got Bella her toy, Phaedra asked me with a shaky voice why Bella reacted the way she did. I must have heard this or read this somewhere, because there’s no way I was this clever on the spot, but this is what I told her:

“Everyone has a cup in their head. We pour all of our feelings, like happy, sad, mad, scared, anything, into that cup. Most people have regular-size cups. When you pour out your feelings into your cup, you have more than enough room for them. Bella has a cup, too, but her cup is little. When she pours her feelings out, her little cup can’t hold all of them, and it overflows. Does that make sense, honey?”

Apparently it did, because she uses this story to explain to others how Bella is different. She shares it with teachers, friends, basically anyone who will stand still and listen to her talk about her family.

“My sister Bella has a little cup.”

Previously: “No, I’m not ready yet”: A sister’s translation for her brother with autism and A mother’s story on what she learned from her autistic son

Scope Announcements

Scope is going on summer vacation

beach scene - 560

We’re taking a little break this month; from now until August 25, Scope will be on a limited publishing schedule. During that time, you may also notice a delay in comment moderation.

Photo by Jim Nix

Medicine and Literature, Stanford News

Stanford Medicine magazine in images

Stanford Medicine magazine in images

There were lots of oohs and aahs among my colleagues when we first got our hands on the latest issue of Stanford Medicine. The award-winning magazine always contains good stuff (kudos to editor Rosanne Spector), but we all agreed that the artwork in this issue was particularly strong. Above are some of the more striking images.

Previously: Stanford Medicine magazine opens up the world of surgery
First two images in first row by Max Aguilera-Hellweg; illustration by Gérard Dubois
Illustrations in second row by, from left to right, Jon Han, Tina Berning and Harry Campbell
Images in third row by, from left to right, Jon Han, Max Aguilera-Hellweg and Gérard Dubois

Health Disparities, Medicine X, Stanford News, Technology

Countdown to Medicine X: How to engage with the “no smartphone” patient

Countdown to Medicine X: How to engage with the "no smartphone" patient

When I saw the full agenda of the upcoming Stanford Medicine X conference, the name of one of the panels – “The ‘No Smartphone’ Patient” -  jumped out at me. The conference is focused on the ways new technology intersects with health care, and it’s heavily attended by researchers, health-care innovators, and patients who strike me as likely to never leave the house without their smartphone or tablet. The topic seemed a curious thing for the organizers to offer.

Once I read the full description of the Sept. 5 talk, though, it made complete sense. Part of Medicine X’s aim has always been to empower patients to be proactive in their care and to contribute to the discussion on how technology can be used to improve human health. So if a significant chunk of the population is low-income and/or has limited access to health-enhancing technologies, it would be prudent for stakeholders to determine how to improve that access and how, exactly, to give those so-called “no smartphone” patients a voice.

Intrigued by the topic and wanting a preview of the discussion, I reached out to panelist Veenu Aulakh, executive director of the Center for Care Innovation (CCI), which develops patient-engagement innovations and provides support to the state’s safety-net providers (community health centers, public hospitals, and public health clinics). After noting that almost one-third of California’s population is considered underserved and vulnerable, Aulakh talked with me about what’s been done for underserved populations in recent years, how she believes the digital divide among various populations is shrinking, and what those attending “The ‘No Smartphone’ Patient” panel can expect to learn.

At Medicine X, you’ll be discussing some of the cultural, social, and economic barriers that prevent certain patients from fully engaging with health-enhancing technologies. Can you provide a hint of what those things might be?

There are a number of barriers for patients to fully engage with health-enhancing technologies. The solutions that are created today are often not built for low-literacy, non-English speaking patients. Having solutions in Spanish and written at less than a 4th grade reading level are critical for getting solutions adopted. In addition, many of these technologies are often introduced to patients via their health-care providers, and the solutions are not created at a price point that either safety net health systems or patients can afford. Also, the solutions need to be more reflective of the realities of patients lives – folks are extremely busy and don’t have a lot of time to hand-enter data or engage with technologies that don’t provide immediate value. If we’re going to get patients (and their providers) to use effective technologies, we need to make sure that they can see immediate benefits if they are to use these technologies regularly. Lastly, the smartphone penetration rate in low-income populations still isn’t at a level where it would be useful for most safety net providers to broadly offer smartphone solutions to their patients. As this changes, the adoption rate of health apps and similar technologies may rise as well.

Do you foresee a time when patients who currently face such barriers can become part of the e-patient movement?

I think there are already many vulnerable and underserved people who would consider themselves part of the e-patient movement. Health centers are now beginning to e-mail with patients, inviting them to participate in texting programs and starting to roll out other e-offerings. However, for more patients to join the e-patient movement, we need to reduce the barriers. As more patients move to smartphones, I believe we’ll see a shrinking of the digital divide. According to Pew Research Center, as of January 2014, 47 percent of low-income people had smartphones. As this number continues to increase, this will help low-income patients be active e-patients (assuming language, literacy and cost issues are addressed).

CCI works to bring various health-enhancing technologies to California’s low-income patients. What are some of the patient-engagement techniques you’ve seen delivered in recent years?

We’ve seen everything from building strong patient and family advisory groups who give input to clinics on how to better design care systems that are truly patient-centered, to launching efforts to hear from the patients about their needs through surveys, focus groups and ethnographic research. Many clinics are also starting to implement texting programs to follow up with patients between visits with appointment reminders, or send education reminders for patients with chronic diseases. They’re also starting to use remote monitoring devices like home blood pressure and blood glucose monitoring. The funding environment (and the limited resources of both clinics and patients) have hampered wide-spread adoption of these types of solutions, but clinics definitely see the value in engaging patients – with both high- and low-tech solutions.

How have your group and other safety-net providers involved patients in developing these techniques?

Many health centers have developed patient and family advisory groups to provide feedback to design these programs. Other clinics are beginning to use the principles of design thinking to better understand the needs of their patients and going beyond the traditional patient experience surveys to hear the real voice of their patients. However, much more work needs to be done to make this the standard of care.

Continue Reading »

Grand Roundup

Grand Roundup: Top posts for the week of July 27

The five most-read stories this week on Scope were:

Losing Jules: Breaking the silence around stillbirth: On the anniversary of her son’s death, a San Francisco mom writes a powerful piece on stillbirth. “I had no idea that in this age of medical advancement 1 in every 167 babies in the United States is stillborn,” writes Polly Styker. “Just over half a percent (.6 percent) doesn’t sound like a lot – until it’s you.”

How to get a student-friendly room for under $100: In the latest installment of SMS Unplugged, medical student Natalia Birgisson shows incoming students how to set up their room for under $100.

The woman in the elevator: dealing with death in medical training: In a recent SMS Unplugged entry, medical student Jennifer DeCoste-Lopez shares her insight on dealing with death and loss in medical training.

Stanford partnering with Google [x] and Duke to better understand the human body: Researchers at Stanford, in collaboration with Duke University and Google [x], are planning a comprehensive initiative to understand the molecular markers that are key to health and the changes in those biomarkers that may lead to disease. The project was featured in a Wall Street Journal article last week.

Induced pluripotent stem cell mysteries explored by Stanford researchers: Stanford researchers answer fundamental questions about the use of using pluripotent stem cells in a clinical setting in two new papers in the Journal of the American College of Cardiology. The work was led by Stanford cardiologist Joseph Wu, MD, PhD, director of the Stanford Cardiovascular Institute.

And still going strong – the most popular post from the past:

Researchers explain how “cooling glove” can improve exercise recovery and performance: The “cooling glove,” a device that helps people cool themselves quickly by using their hand to dissipate heat, was created more than a decade ago by Stanford biologists Dennis Grahn and Craig Heller, PhD. This video demonstrates the device and explains how it can be used to dramatically improve exercise recovery and performance.

Cancer, Dermatology, In the News, Public Safety, Research, Stanford News

A closer look at new research showing disproportionate rates of melanoma in Marin County

Last week, Cancer Prevention Institute of California/Stanford Cancer Institute researcher Christine Clarke, PhD, shared results of a new report (.pdf) showing that a county in California has higher numbers of melanoma skin cancer than the rest of the state. On this morning’s Forum Clarke joined two other guests, including Stanford dermatologist Susan Swetter, MD, director of the Pigmented Lesion and Melanoma Program at the Stanford Cancer Institute, to discuss the research and to offer skin safety and screening tips for the summer.

It’s worth a listen – especially if you live in the county just north of San Francisco.

Previously: Melanoma rates exceed rates of lung cancer in some areasWorking to protect athletes from sun dangers, As summer heats up take steps to protect your skin, Stanford study: Young men more likely to succumb to melanoma, New research shows aspirin may cut melanoma risk and Working to prevent melanoma

Grand Roundup

Grand Roundup: Top posts for the week of July 20

The five most-read stories this week on Scope were:

What other cultures can teach us about managing postpartum sleep deprivation: A recent Huffington Post piece from the Stanford Center for Sleep Sciences and Medicine examined how mothers in other countries cope with postpartum sleep deprivation.

Stanford bioengineer develops a 50-cent paper microscopeManu Prakash, PhD, assistant professor of bioengineering, has developed an ultra-low-cost paper microscope to aid disease diagnosis in developing regions. The device is further described in a technical paper.

How much caffeine is really in one cup of coffee?: As described in a Scientific American piece, new research shows the caffeine and caffeoylquinic acid content can vary greatly depending on the type and preparation of coffee.

Why sleeping in on the weekends may not be beneficial to your health: This blog entry links to a Wired Science article describing the dangers of oversleeping.

In medicine, showing empathy isn’t enough: In the latest installment of our SMS Unplugged series, medical student Moises Gallegos discusses some of the things he’s learned and observed about health disparities.

And still going strong – the most popular post from the past:

The mystery surrounding lung-transplant survival rates: A 2012 article in the San Francisco Chronicle offered a look at the challenges facing lung transplant patients and explored why a significant number don’t live beyond the five-year mark, despite improvements in survival rates.

Humor, Parenting, Science

A humorous look at how a background in science can help with parenting

A humorous look at how a background in science can help with parenting

Scientist-moms out there might enjoy this playful (tongue-in-cheek) Huffington Post essay on how having a science degree made the writer a better parent. I had to chuckle at Sarah Gilbert’s list of how she’s found uses for the sciences in her day-to-day life:

Physics: Knowing that my house will return to complete disorder immediately after I clean it, because entropy.

Biology: Knowing everything my baby ate by the contents of her diaper, because scat identification.

Neuro-psychology: Knowing that my toddler freaking out over sandwich crusts is just a phase, because frontal lobe development.

Statistics: Knowing that the chance of having a baby brother is 50/50 no matter what my mother-in-law thinks, because mutually exclusive events.

Astronomy: Knowing that the woman judging me by my yogurt-spattered shirt isn’t the only thing in the universe, because cosmology.

In the News, Mental Health, Research

How are flight attendants affected by plane disasters?

How are flight attendants affected by plane disasters?

airplaneA few nights after the recent plane crash in Ukraine, I ran into an acquaintance who was heading to Europe later in the week. “It feels weird to fly,” she told me, comparing it to how she felt about boarding a plane for the first time after the 9/11 attacks 13 years ago. I could relate: During my first post-9/11 flight, I was jittery and uneasy the entire way from San Francisco to Minneapolis. (It didn’t help that I was flying alone, in the darkened cabin of a red-eye.)

If plane crashes and tragedies like the one in Ukraine can leave passengers feeling unsettled (or worse), how might they affect people who take to the skies on an almost daily basis? In a piece on The Atlantic yesterday, writer Rebecca Rosen reported on the work of Jeffrey M. Lating, PhD, a professor of psychology at Loyola University Maryland who has studied this issue. Rosen writes:

For flight attendants who worked at American Airlines on 9/11, the rates [of PTSD] were… just over 18 percent. This number is so high, Lating says, it is comparable to the rates seen among people living south of Canal Street in Manhattan, the neighborhoods closest to Ground Zero.

Lating and his colleagues found no statistical difference in probable PTSD rates between West Coast flight attendants and East Coasters, who were much more likely to have known the flight attendants killed on 9/11. For flight attendants, it seems that the trauma they experience following a crash comes not only from the loss and tragedy itself, but also from a deep sense of vulnerability. A follow-up study in 2006 found similarly high rates of probable PTSD at another airline, further suggesting that “it didn’t matter what airline you worked for,” says Lating. “The virulent factor in this was, ‘I wonder if I could possibly be next.’ ”

Those fears can make just doing one’s job as a flight attendant incredibly challenging. Many suffering from PTSD try to avoid sights and triggers that recall the initial trauma. But for flight attendants, those reminders are unavoidable, part of the work itself. To have to work through that anxiety, all the while servicing others and maintaining a sense of calm on a flight— “you could imagine how uncomfortable that would be,” Lating say

Previously: 9/11: Grieving in the age of social media and What 9/11 has taught us about PTSD
Photo by epsos.de

Health Disparities, Health Policy

A quiz on the social determinants of health

Given the topic of today’s SMS-Unplugged entry, during which Moises Humberto Gallegos discusses how things like housing insecurity and financial hardship can contribute to poor health, I was interested to come across this Covering Health quiz on the social determinants of health. Writer Joe Rojas-Burke asks 10 true-or-false questions, and I think some of the answers may surprise you. For example:

Expanding health insurance coverage and access to medical care (the focus of the federal Affordable Care Act) is unlikely to reverse the health disparities caused by the social determinants of health.

TRUE: In countries that established universal health coverage decades ago, lower social status still correlates with worse health and shorter lives. The research on social determinants suggests that progress is likely to require broader social changes, such as improving access to education, boosting economic opportunity and making disadvantaged neighborhoods safer and and more vital.

And:

Food deserts – neighborhoods with few or no grocery stores selling fresh, affordable produce – are a well-defined root cause of obesity and other health problems in disadvantaged communities.

FALSE: There is evidence showing that low-income and minority Americans are more likely to live in food deserts. But it’s not at all clear to what extent the lack of supermarkets and grocery stores contributes to obesity or other health outcomes.

Previously: In medicine, showing empathy isn’t enough, Should the lack of access to good food be blamed for America’s poor eating habits? and Hopkins researchers find place, rather than race, may be greater determinant of health

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