Caring for Kids (and Others) in an Online Work Environment

Between the end of September and the beginning of October, I “attended” the 50th Anniversary Meeting of the Child Neurology Society, an organization I have long considered to be my professional home away from home. You doubtless realize that “attended” is in quotation marks because, as a result of the pandemic, I participated virtually in this meeting. Being a child neurologist of a certain age as they say, the Society’s members consist largely of people who trained me and my peers; people who were my peers in training; and people whom my peers and I trained. This makes the Child Neurology Society’s annual meeting a kind of family reunion for me. As such, what better topic on which for me to be a symposium speaker than “The Tiny Elephant in the Zoom Room: Harnessing a Crisis to Recover, Maintain and Enhance Career Development in Child Neurology”?

The symposium discussed data, questions, and potential solutions around the topic of combining family caretaking responsibilities with the development of a professional career in child neurology. Its lecturers covered careers focused on education, clinical medicine, and research. All of the talks and the panel discussion, including all four lecturers and four additional discussants, included rigorously accrued data and proposed solutions as well as personal anecdotes and advice. Although this particular symposium focused on child neurology, none of its findings are unique to that discipline. The group is planning a detailed manuscript and hopes to launch a national discussion that results in iterative development and implementation of responses and solutions to this challenge. But I feel compelled, while they are fresh in my mind and exquisitely relevant to the present moment, to present a few overarching points:

  1. This is not a new challenge. The pandemic made an old problem more visible, more widespread, more acute and severe, and, therefore, more of a challenge. But family caretakers have felt challenged to develop their careers and career professionals have felt challenged to spend optimal amounts of time with their families ever since people have had families and sought careers!
  2. This is not just about having young children. There is no question that trying to get work done from home while school-aged children too young to attend to schoolwork without supervision or infants and toddlers not yet in school are in need of time and attention is extremely challenging. But so too is caring for older adults or an ill spouse or a cognitively challenged sibling. And I have always said that owning a home is like having an extra child who never grows up – blackouts, floods, forest fires, earthquakes, tree limbs breaking – lots of things always compete for our attention and energy and sitting in the midst of it, I daresay in the same room for almost two years, does not make it any easier!
  3. This is not just about women. In our current society in North America, women still do a disproportionate share of the day-to-day work of child rearing in most households, while they increasingly also pursue professional careers. But a third of family member primary caretakers are men, many of whom are caring for elderly parents who may even live in a home different from their own. My own research has shown that women in academic leadership positions more often than men are in positions where success is critically dependent on interpersonal relationship-building – positions in education, community engagement, fundraising, communications, and public relations. The pandemic has perhaps impaired progress in these fields a bit more than in others. But none of these fields are occupied solely by women, and male-predominant fields, like research, clinical leadership, and institutional policy-making, depend on social interaction as well.

It’s very possible that we have been in this together for a long, long time, and SARS-CoV-2 just turned up the volume a few notches. Doesn’t this mean it is high time for action? Surely this won’t be the last time Mother Nature throws a monkey wrench into the works! I am actually thinking and in some ways hoping that “business as usual” will not be the same old usual as it was pre-pandemic. Here are some actions taken and lessons learned by NINDS and NIH. Many are generalizable and applicable way beyond the NIH campus!

  • Flexibility and diversity are cousins, and both make us stronger: We cannot afford to sacrifice quality, high moral standards, equity, and fairness. We need increasingly to ask ourselves if an alternative strategy, work venue, work hours, or ways of networking and team-building might serve this pursuit as well or better. We all suspect hybrid work environments and workforces are a reality for the foreseeable future. We must embrace and leverage them to enhance their impact and our inclusiveness.
  • Timelines and timed benchmarks may not be important if the objective is making a contribution or reaching a goal during a career-long period: NINDS and NIH have extended eligibility periods and grant periods, particularly for early career grant mechanisms. Within our NIH intramural workforce, we have added explicit sections of narratives sent by investigators to our Board of Scientific Counselors review groups, which review our scientists every 3-4 years, on how the pandemic affected access to laboratories and clinics; ability to obtain reagents, animals, and research subjects; hiring and onboarding of personnel; publication production; and research productivity in general.
  • Every new circumstance is a learning and growing opportunity for children: Whether or not it is possible to include your children in seeing and understanding your professional endeavors is a function of their and your particular situations. Every family and every person faces challenges, and some make it difficult or impossible to fully share some aspects of what we do. But while children learn a particular set of facts, principles, and skills in school, they also learn other indispensable things from seeing their parents deal with challenges, mistakes, change, and adversity. To the extent that it is possible, include them, teach them, and give them the privilege of being proud of everything you and they have been able to accomplish in this challenging world.

A Look at WHY Underrepresented Populations Leave Neuroscience Research

In “Factors that Influence Career Choice Among Different Populations of Neuroscience Trainees,” published recently in eNeuro, NINDS program director Lauren Ullrich, Ph.D., and fellow authors bring to light many issues about why women and individuals from underrepresented populations leave the neuroscience field at rates higher than men and Whites. They are less often first authors of papers, publish in journals with lower impact factors, and less often submit grants through the “special,” more honorific mechanisms NIH has to offer.

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Announcing the New NINDS Five-year Strategic Plan

Two years in the making, we have posted our NINDS 2021-2026 Strategic Plan. This Strategic Plan differs from its predecessors in several ways. First, it began with a mandate that my colleagues at NINDS dream big. Big for patients and families struggling everyday with neurological disorders. Big for scientists around the world trying to understand the mysteries of the brain, spinal cord, muscles, and peripheral nerves. Big for the clinical trialists, the pharmaceutical industry, the science and technology policy makers, the device inventors. Big for health, quality of life, safety, rigor, and public access.

Second, it started within NINDS, with 100 taskforce and steering committee members and nearly 100 intramural faculty, staff, and trainees; then our outside stakeholders, with 140 discussion panel members; and finally more than 120 responses from individuals and organizations to requests for information from the public. Developing the plan empowered our biomedical workforce, engaged patients and advocacy groups, reached out to industry, academia, and our colleagues in government.

Third, it includes both focused approaches to our science and our training programs, and broad, overarching strategies that are part of the fabric of who we are and who we hope to be. That hope is to be the very best possible version of NINDS  and to serve as a model and impetus for the entire biomedical community to become their best, too.

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Stroke Awareness Month: May 2021

As I look out the window of the room in my home in which I have been working for over a year, it is hard to believe how green the trees have become!  But Spring is truly here, and if it’s May, it must be Stroke Awareness Month.  Over the past decade, NIH and its government, nonprofit, and hospital partners and scientists and health care providers around the country have worked to make people everywhere aware of the risks and dangers of stroke; help people lower their blood pressure and cholesterol; design and test better drugs and devices to treat heart rhythm disturbances and prevent the blood clots they cause; and implement methods for dissolving or pulling out clots in blood vessels in the brain.  Accordingly, age-adjusted stroke rates and death rates from stroke have decreased over the past decade in both men and women and for all races and ethnicities.  But lest we think we don’t have to worry about stroke anymore, we still have lots of work to do!

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NINDS Recognizes Parkinson’s Disease Awareness Month

This month is Parkinson’s Disease Awareness month and, even as a child neurologist, I find myself thinking about how much we have learned and how much we have yet to learn about this common neurodegenerative condition.

Parkinson’s disease is a progressive movement disorder that primarily affects people over the age of 65. However, an estimated four percent of people with Parkinson’s are diagnosed with “early onset Parkinson’s disease,” meaning that they were diagnosed before age 50. Clinically, Parkinson’s disease is characterized by slowness of movement (bradykinesia), rhythmic shaking of the limbs and head (tremor), inflexibility of the limbs (rigidity), and loss of the balancing mechanism (postural control).

In addition to these classic “motor” or movement-related symptoms, people with Parkinson’s also experience a range of symptoms affecting daily activities, including fatigue, pain, changes in mood and thinking, difficulties sleeping, issues with eating and swallowing, and bladder and bowel problems. Under the microscope, the brains of patients who had Parkinson’s disease all show abnormal clumps of proteins, called Lewy bodies, and the loss of nerve cells that make the chemical dopamine.

What has become clear is that Parkinson’s represents a complex spectrum with shared characteristics, including a classic trio of motor symptoms and similar end-term brain changes, but also with a range of physical manifestations such that the experience of each person with Parkinson’s is unique.

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