Ways To Cope When Your Child Gets A Life-Altering Diagnosis todayheadline

Ways To Cope When Your Child Gets A Life-Altering Diagnosis

By Beth S. Russell

“What am I supposed to do now?”

This was the most common sentiment 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 echoes of pain and loss from parents of critically ill infants, sometimes slumped and moving slowly in their worry. Beneath soft voices, anxiety about the future bounced off every wall—how they would care for their child at home without the equipment and support of the hospital, how they would 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. While these parents were a decade or more into their caregiving routines, many were still struggling to know what to do, 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 care providers possible and the best 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, to provide structure and consistency, remain important but might prove harder to prioritize. These caregiving demands can be extreme, and research tells us that parents can struggle to meet their own needs and the needs of their children, often sacrificing their own health care and well-being. Caregiving burden—the stresses and strains specific to the role parents play as caregivers when children have a chronic health condition—can have negative effects on parents’ health and many indicators of psychological well-being, such as increased anxiety and depression symptoms 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 families make sense of past struggles and give them a sense of what strategies might help for those that lay ahead. But it can also be deeply unsettling and scary because the information might be overwhelming and lead to uncertainty. No parent can anticipate what launching their someday-grown child into independence will be like, but those whose children have chronic health problems have fewer examples to shape their expectations. This comes in part because parenting is one of our most vulnerable and precious roles, so people tend to guard their struggles. It’s also attributable to families’ unique experiences, even within the same diagnosis. What works for one family might not work equally well for others. That can lead people to be skeptical and protective, reluctant to share advice or try new things.

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 only gets us so far, especially when times are particularly tough and stress especially high. When we find ourselves on the edge of being overwhelmed, it’s time to reach for 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 a soak in the tub or an afternoon nature hike. 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. This means being lightly committed to any given solution, so that when 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 previously worked, 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 the option to loop back to past strategies to find the right fit for what’s needed at any moment. When my younger brother was diagnosed with ALS, I found daily 20-minute runs on a treadmill extremely helpful but only in the afternoons; in the evenings running just wound me up and ruined my sleep, and running in the mornings was too complicated to fit into my caregiving and work schedule. In that case, being flexible with the timing was the key to running as a coping strategy.

Joy: Sometimes the best thing we can do is pass time and try to spend it 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 on hand or your favorite book by your bed, wearing a favorite shirt with just the right soft feel, or 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 moments that can be easily shared with our children.

Community: Social networks are the most agile when they are diverse and parents have different people to draw on for their range of needs. One way to think about this is to build your social safety net both with people who are excellent in a tight spot and reliable everyday supports—the friends and family always up for a quiet movie buddy to sit with on the couch, a ride to the laundromat or a walk after dinner around the block. While 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 the crisis is a hard moment to try new things. My advice is that families use calmer times to identify and try novel ways of coping, practicing how to engage those resources. So when days get rougher, the resources are familiar and easier to reach for, rather than having to be developed from scratch when needed most.

This is an opinion and analysis article, and the views expressed by the author or authors are not necessarily those of Scientific American.