Improving Outcomes by Taking Care of the Caregiver
By Matt Phillion
Nearly one-third of U.S. youth meet criteria for an anxiety disorder by age 18 but three out of five children and adolescents with anxiety do not receive treatment. This challenge causes issues upstream not just for the patients themselves but for their caregivers. Caring for children and adolescents with anxiety disorders can put emotional and practical strain on the people who care for them.
A recent report from InStride finds that effective treatment models benefit not only the patient but improve the quality of life for the whole family around them.
“One of the things that stood out to me in the report was the reduced absenteeism for parents as a result of kids being effectively treated,” says Dr. Kathryn Boger, co-founder and Chief Clinical Officer with InStride. “It’s something we’ve seen anecdotally over the years, with parents missing work or needing to take leaves of absence because their kids are in a crisis that requires all hands on deck.”
As these young patients get their lives back, their parents get their own lives back too.
“An important aspect of care is addressing family accommodation. These are behaviors family members engage in to reduce anxiety- or OCD-related distress. While they bring short-term relief to the young person—and likely to their family as a byproduct—they actually reinforce and worsen symptoms over time. The more the parents engage in the behavior, the more the anxiety or OCD grows.”
Family accommodations might be, for example, ordering for child with social anxiety at a restaurant, washing your hands, refraining from contact, or buying extra cleaning supplies to address germ-related fears, or changing family plans or routines to accommodate the child’s anxiety. InStride helps families identify family accommodations and create a clear plan to gradually remove and eliminate those behaviors—some of which the families may not even be aware they’re engaging in.
“What’s important is that we’re not just working with the young people themselves. This is affecting the entire family system and we need to set up the family to support the young person in an ongoing way,” says Boger.
The challenge is that those accommodations do offer relief on the spot, so there’s a need to help families understand that the most effective thing they can do is pull back and eventually stop providing the accommodation to allow the child to face the things that feel scary.
“This can be incredibly difficult to do, as we typically see an extinction burst, where the anxiety and the associated behavior get worse before it gets better,” says Boger. “This is because the young person’s brain is telling them that they need the accommodation to be safe so they are likely going to be upset and scared when it’s removed. It’s much easier to talk about than to actually do, so we teach parents how to do it and support them through it.”
Self-doubt is not unusual in these situations.
“It’s very easy to question yourself. ‘Wait a second, I’m trying to give my child relief, but am I doing the wrong thing and damaging them or our relationship in some way?’” says Boger. “But if you can get over that hump, you will see results and your child will eventually start getting relief.”
There’s usually a graded plan to removing family accommodations. If the child asks for repeated reassurance about something, the first step could be acknowledging that their question is stemming from their anxiety (“That sounds like your anxiety talking”) and maybe answering it once. Then after the child gets used to that, you could give a thumbs up to acknowledge it without answering, and eventually you’d stop answering altogether, she says.
Defeating burnout in caregivers
It is very important to normalize that this is all part of the process for caregivers, Boger notes.
“It’s really hard. You’re a parent who loves your child and you want to protect them, but in the case of OCD or anxiety, the more we try to buffer them from the anxiety- or OCD-related distress, the more we’re inadvertently making it harder for them in the longer-run,” says Boger. “So we say, ‘This is going to be hard. We’ll be here when it gets hard. We’ll talk through what to do and help you plan ahead for how to manage the situation if and when your child gets more distressed. We’ll help you plan for strategies to use so that you’re able to make a decision deliberately instead of on autopilot when your child’s emotions run high.’”
It’s also important to educate caregivers to support other caregivers.
“If there’s more than one caregiver in the house, we help ensure that the caregivers present a united front. We all grow up with our own unique understanding of how parents should engage in these situations, and oftentimes we’ll see a disconnect—good cop/bad cop to oversimplify,” says Boger. “We want to make sure both parents are on the same page, educate both parents together, and help them spot the traps they’re both likely to fall into and then plan how each can support one another.”
An example of this is validation: teaching the parents to validate each other, noting when they’re doing something hard and acknowledging the other’s emotions.
“This way, the other parent feels heard and understood,” says Boger.
One of the most painful things a parent can go through, Boger notes, is when your child is in high distress, when their functioning is impaired, and they’re not able to do the things other kids their age are doing because of the severity of their symptoms.
“Every instinct is to fix it and make it better,” she says. “That’s one of the cruelest traps of family accommodation. In the moment, when your kid is in such distress, all you want to do is help. But the things they’re asking or even begging for are going to make the cycle of distress stronger. To get out of that, it’s hard work, but it’s really what works to help shrink anxiety and OCD.”
This drags parents into burnout heavily as well.
“Parents have competing demands. They often have work and other kids they need to care for in their daily lives,” says Boger. “Life goes on, but they have a child in crisis. It’s a lot to manage on top of their own mental health, which can suffer when their child is struggling.”
Being a parent of a child with anxiety or OCD can also be very lonely, Boger says.
“It can often be easily hidden, so you’ll hear parents say it feels like they’re the only ones going through it and other people don’t see it or understand,” says Boger. “Other people often don’t grasp how draining it is.”
Anxiety and OCD can have ripple effects not just on the young person and their parents but also on the whole family system, including siblings.
“Sometimes you’ll see a dynamic where siblings start playing a balancing role, when one sibling is struggling, the other might start acting as the helper or the one who doesn’t have needs in effort to prevent additional strain for their parents,” says Boger.
One of things a parent can do to address how a young person’s anxiety or OCD is affecting siblings is to lead with curiosity, Boger says.
“Ask open ended questions and check in, try to understand the impact it’s having on their siblings,” she says. “And try to think about a balanced way to have one-on-one time. It’s quality time over quantity but make sure they have your full attention and feel seen and heard.”
Meanwhile, it is crucial for providers to make sure they incorporate parents into the care of young patients with OCD or anxiety.
“Gather data on how the child’s symptoms are faring, and also the parents. Lead with curiosity here as well, checking in on their concerns and stress level,” she says. “Make sure they’re getting the support and care they need. We use the oxygen mask analogy a lot. If you’re on a plane that’s going down, make sure you have your mask on first before you put on your child’s so you can be as effective as possible for them.”
Matt Phillion is a freelance writer covering healthcare, cybersecurity, and more. He can be reached at matthew.phillion@gmail.com.