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.

What Can NIH Do? What Can’t NIH Do? How Can We Work Together?

My recent column about post-acute COVID syndrome generated a lot of feedback, and one of the most common questions I got asked is, “Why don’t you tell Congress they need to allocate funding for [Disease X]?  It is so common, so disabling, so deadly, and so costly for patients, families, and society.  You need to tell them to allocate a fraction of their budget to conquer [Disease X].” 

This common question has a very, very simple answer: It is against Federal law for NIH or any Federal employee to lobby Congress.  We simply cannot advocate for ourselves, our scientific community, or specific patient and family constituencies.  We are permitted to educate members of Congress, but even that, only when asked to do so. 

Another question I am often asked is, “Why doesn’t NINDS just declare that, this year, we are going to spend our money on understanding, treating, and curing [Diseases A, B, and C] because they are so prevalent and so negatively impact  the lives of patients and families.”  Each NIH institute has a different way of making its funding decisions.  While Congress has allocated funds to some disease- or condition-specific programs that NINDS leads or co-leads, NINDS generally has not. 

This decision grows directly from our long-term vision and strategy.  Our vision sets its sights on easing the burden of patients with neurological disorders – not a specific type of patient or a specific neurological disorder, but all people affected by any and all neurological disorders. 

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Combating Pain and Preventing Addiction

September is Pain Awareness Month. In recognition of this, NINDS Director Walter Koroshetz and National Institute on Drug Addiction (NIDA) Director Nora Volkow have written a blog post highlighting NIH’s efforts to foster research, education, and patient care.

Pain is a symptom, a condition, not a disease.  But do not let this fool you.  Pain is among the most common and most disabling conditions known.  It can be acute (sudden in onset and relatively short-lived) or chronic (long-lasting).  Acute pain, most often with a known cause, sometimes becomes chronic pain.  Often, it is not known why the transition occurs or why the pain persists.

It is estimated that between 20 and 30% of people have been affected by pain that lasted at least 24 hours in the past 6 months.  Pain can afflict anyone at any age.  While scientists have learned a great deal about pain and have developed medications, devices, and techniques that counteract some of the steps in the pathway that leads to initiation, production, and perception of pain, many medications that are effective against pain are addicting and those that are not are ineffective against the most severe and most chronic painful conditions.

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Diversification of the Neuroscience Workforce: Not One Size Fits All

In August 2019, NINDS welcomed more than 35 female Prince George’s County Public School STEM students at the Girls Navigating Neuroscience program (click image to learn more)
Image Credit: Chia-Chi Charlie Chang

Given that the word “diverse” means “made up of many different kinds,” it has always seemed odd to me that we think of the process of diversification in one dimension only. Recent studies have suggested that not only the degree but also the nature of diversification within the biomedical workforce differs among race and ethnicity, gender, level of expertise, and programmatic career focus. There can be no single specific recipe for achieving equity and inclusion; it requires, rather, a living, evolving, and creative cookbook!

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Neuroscience on the NIH Campus and the NINDS Intramural Research Program

So far in this blog, we have talked about two major components of NINDS: the Office of the Director, which oversees and supports everything NINDS does, and the extramural program, which supports research being done in labs throughout the United States and around the world. Here I will discuss a third component to NINDS—our own research program housed on the NIH campus in Bethesda, Md.

John Edward Porter Neuroscience Research Center, NIH Campus, Bethesda, Md.

In many ways, the NINDS Intramural Research Program (IRP) is very much like a research center or the research component of a department at a university medical center elsewhere in the United States. There are principal investigators—doctors and scientists who run laboratories and research clinics that perform basic, translational, and clinical research. These labs also support experienced staff scientists and staff clinicians; post-doctoral fellows—scientists who have finished graduate school but are continuing their training; residents and fellows who are doctors getting more specialized training in neurology or neurosurgery; and graduate and post-baccalaureate students.

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