“What am I supposed to do now?”
This question was the most common one from parents when I started my training in the quiet and solemn neonatal intensive care unit (NICU) of an otherwise welcoming, brightly lit, cheerful children’s hospital.
I felt the pain and loss of these critically ill infants’ parents, who were sometimes slumped and moving slowly in their worry. Their soft voices belied the anxiety about the future bouncing off every wall: How would they care for their child at home without the equipment and support of the hospital? How would they build the routines to help their child thrive under unimaginably hard circumstances?
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More than 20 years later, at a different children’s hospital, I saw some of the same worries in parents of teenagers with chronic pain. Even though these parents were a decade or more into their caregiving routines, many were still not sure about what to do or how to care for their children as they approached adulthood. Without exception, they wanted their teens to strive for an independent adulthood, but they had trouble providing even small opportunities for independence out of fear of disruption to their child’s medical care plan. Just like the NICU parents from my training days, these families were struggling to be the best possible care providers and parents. That needle is hard to thread.
Raising a child with a chronic health condition changes the routines that shape everyday life. Meals, bathing and dressing might be different than planned; bedtime and playtime also shift. Parents still need to be patient, warm, responsive and encouraging; that doesn’t change. Being able to give praise and to provide structure and consistency remains important but might prove harder to prioritize. These caregiving demands can be extreme, and research tells us that parents can find it difficult to meet their own needs and the needs of their children, often sacrificing their own health care and well-being. Caregiver burden—the stresses and strains specific to people in the role of caregiver for someone with a chronic health condition—can have negative effects on parents’ health and is reflected in many indicators of psychological well-being, such as increased symptoms of anxiety and depression and decreased overall life satisfaction.
After decades of studying how people manage psychological distress, including children with chronic relapsing conditions, I have designed and evaluated support programs to help families manage daily stresses. A child’s diagnosis can help their family make sense of past struggles and give them a sense of what strategies might get them through those that lie ahead. But it may also be deeply unsettling and scary because the information might be overwhelming and lead to new worries.
No parent can anticipate what launching their grown child into independence someday will be like, and those whose children have chronic health problems have fewer examples to shape their expectations. Part of this uncertainty arises because parenting is one of our most vulnerable and precious roles, and as a result parents tend to guard their struggles. It’s also attributable to the fact that families have unique experiences, even when they are confronting the same diagnosis. What works for one family might not work equally well for others. That can lead people to be skeptical, protective, or reluctant to share advice or try new approaches.
Most of the parents I talk to tell me they don’t have time or energy for self-care; evidence also suggests the care we provide ourselves gets us only so far, especially when times are particularly tough and stress very high. When we find ourselves on the edge of being overwhelmed, we need more than the familiar set of one or two relaxation activities we know work; it’s time to reach deeper into the coping toolbox. It is too steep an expectation to think parents can do it all for themselves, at least not all the time—and it sets them up to feel pressure, guilt and shame when they can’t fit in an afternoon nature hike or a soak in the tub. Here’s a set of skills and practices for parents of children with chronic illnesses or life-changing diagnoses that I recommend parents try.
Flexibility
This first one is hard work, but recent research indicates cognitive flexibility is one of the most successful ways to deal with negative experiences. It calls for being only lightly committed to any given solution so that if we don’t see the improvement we hoped for, we can pivot to a different strategy. Often we rigidly stick to the coping skills that have worked in the past, but what helped in one situation might not help as much the next time. Flexibility lets us see multiple paths out of a tough spot and leaves us the option to loop back to past strategies to find the right fit for any given moment.
When my younger brother was diagnosed with amyotrophic lateral sclerosis, I found daily 20-minute runs on a treadmill extremely helpful but only in the afternoon; in the evening running just wound me up and ruined my sleep, and running in the morning was too complicated to fit into my caregiving and work schedule. In my case, being flexible with the timing was the key to making running an effective coping strategy.
Joy
Sometimes the best thing we can do is to try to pass time in fun ways—especially with our children. Routines that bring us moments of joy are invaluable counterpoints to the gravity of worry and daily hassles. Finding quick touchpoints that make us smile can be simple, especially when we rely on our five senses. Keeping a playlist of favorite songs or a favorite book on hand, wearing a favorite shirt with just the right soft feel, and planning a favorite meal or snack after a day full of appointments are all strategies to bring something small and positive into our day in ways that can be easily shared with our children.
Community
Social networks are the most agile when they are diverse and when parents have different people to draw on for their various needs. Try to build a social safety net that includes both people who are excellent in a tight spot and those who are reliable everyday supports—the friends and family always up for quietly watching a movie on the couch or going for a ride to the laundromat or taking a walk around the block after dinner. And although in-person connections are valuable, online communities can also be powerful points of reassurance and encouragement.
Building these resources takes time, and the middle of a crisis is a hard moment to try new things. I advise families to use calmer times to identify and try novel ways of coping so they can practice engaging those resources. That way, when days get rougher, the resources are familiar and easier to reach for rather than having to be developed from scratch when needed the most.
