Navigating Chronic Stress for Parents and Caregivers

by Beth Ayers, Family Support Training Coordinator

January 6, 2025

As parents or caregivers of children with special healthcare needs, including behavioral health, we deal with stress on a daily basis. Studies consistently show that stress is higher for parents of children with disabilities (Gerstein, 2009). The demands of caregiving can be overwhelming, leading to chronic stress, emotional exhaustion, and feelings of isolation. Parents of children with special needs often experience higher levels of anxiety and depression, as they navigate medical, educational, and social challenges on a daily basis (Scherer, Verhey, & Kuper, 2019).

Research on parents and caregivers of children and youth with special health care needs (CYSHCN) often highlights the significant stress they experience due to the unique challenges of caregiving. Some key areas include:

1. Emotional and Psychological Stress: Studies indicate higher levels of anxiety, depression, and burnout among caregivers of CYSHCN compared to caregivers of typically developing children. Factors such as uncertainty about the child’s future, financial strain, and social isolation contribute to this stress. 31% of CYSHCN parents experience clinical depression vs. only 7% of non-CYSHCN parents (Scherer, Verhey, & Kuper, 2019).
2. Impact on Physical Health: Chronic stress can lead to physical health issues, including weakened immune function, sleep disturbances, and cardiovascular problems.
3. Parental Relationships and Family Dynamics: The stress of caregiving can strain relationships with partners, extended family, and other children in the household.
4. Work-Life Balance and Financial Strain: Many caregivers struggle with balancing employment and caregiving responsibilities, often facing reduced work hours or job loss, which adds financial pressure. (ChatGPT)

Stress is one of those over-used words in our culture and can be hard to succinctly define. Kelly McGonigal, PhD, a health psychologist and lecturer at Stanford University, defines stress this way, "Stress is what happens when something you care about is at stake.” Meaning, we only stress about things that matter to us. That definition resonates with parents and caregivers raising children with special health care needs. Our children matter to us more than words can express, as does their health and quality of life. No wonder we are stressed!
Is there anything good about stress? Stress can push us to go further and achieve what feels superhuman. Stress can be what fuels us to keep advocating for our children. Stress can actually have some positive effects when managed properly. Here are a few ways stress can be beneficial:

1. Increased Focus and Motivation: A moderate amount of stress can help us stay alert and motivated, pushing us to focus and complete tasks more effectively, especially when there's a deadline or a challenge ahead.
2. Improved Performance: In short bursts, stress can enhance our performance. It stimulates our body’s fight-or-flight response, which can sharpen our abilities to react to urgent situations or problems.
3. Personal Growth: Overcoming stress can lead to personal development and resilience. It teaches us how to cope, adapt, and grow stronger in the face of challenges.
4. Stronger Relationships: Shared stressful experiences can strengthen bonds with others, as working through difficult times together often fosters empathy and support.
5. Enhanced Problem-Solving: Stress can motivate us to find solutions. It encourages creative thinking and problem-solving skills, helping us come up with new ways to tackle challenges. (ChatGPT)

According to Kelly McGonigal, the science tells us that stress is most likely to be harmful when three things are true:

• We feel inadequate to handle the stress.
• The stress isolates us from others.
• The stress feels utterly meaningless and against our will.

I hope you can see how family support and community address all three of these. Family peer support is powerful in moving others from survival (fight or flight) to a challenge response.

In the article, "Taking the Distress out of Stress" by Abhijit Pradhan, Kelly McGonigal, PhD, states, “This research doesn’t suggest that the most helpful mindset is a Pollyannish insistence on turning everything bad into something good. Rather, it’s the ability to notice the good as you cope with things that are difficult. In fact, being able to see both the good and the bad is associated with better long-term outcomes than focusing purely on the upside.”

People tell us to avoid stress but that’s impossible. Going back to Kelly McGonigal’s definition that stress is what happens when something you care about is at stake, we can’t eliminate the things we care about. Stress is always going to be a part of our life.

The stress paradox is the idea that stress can have both positive and negative effects. It suggests that people can learn to embrace stress to their advantage. A 2013 Stanford and Florida State Joint Study measured the statement – “Taking all things together, I feel my life is meaningful.” The study found:

1. People who experienced the highest number of stressful life events were most likely to consider their lives meaningful. This discredits the idea that getting rid of stress will lead to a better life.
2. Even though most people view life negatively, higher stress levels seem to go along with things that create life satisfaction.
3. Happy lives are not stress-free, and stress-free doesn’t equal happiness.

The group of people who said their lives were least meaningful also said their lives had the least amount of stress. Translation: There is no such thing as a meaningful life without stress!

Types of Stress Responses:

Threat Response (Fight or Flight)

• Most common
• Least helpful response in the 21st century according to Kelly McGonigal because we so rarely face actual physical danger
• Prepares the body for a physical challenge useful for self-preservation
• Chronic fight or flight response creates plaque in the arteries that causes heart disease

We tend to assume that the fight or flight response is the only response to stress. This is because it is the first response we learn. Fight or flight is the response of our lizard brain which is the first part of the brain to develop. But fight or flight is not the only response.

Challenge Response

• More healthy response in the 21st century
• Gives access to mental resources
• Enhances concentration
• Brain gets more fuel

The challenge response says, “Something I care about is at stake here and I'm prepared to deal with it.” When our brain changes from a physical response to a mental challenge, it opens up to consider the possibilities. Instead of our bodies pumping blood to the big muscles for fight or flight, it pumps blood to the brain because in a challenge response we need to be able to think.

Tend and Befriend Response

• Motivates us to protect people and communities we care about
• Produces oxytocin which makes arteries and blood vessels more flexible and aids in better heart health

We don't say “bring on the stress” so we can practice tend and befriend. But when stress eventually comes and we choose the tend and befriend response, we move into community and gain the opportunity to do good things for ourselves by helping others. Our role as Family Peer Supporters in people's lives supports this because they get to connect with someone who's just going to support them. This is why peer support is so valuable.

Appreciating stress is the opposite of avoiding stress. We’ve already discussed that avoiding stress is impossible. Appreciating that there is some silver lining to stress helps us embrace it.

• Going through stress makes us better at it. We think we can handle the next thing because we handled the last thing, sometimes gracefully, sometimes not, but we made it to the other side of it.
• Viewing a stressful experience as an opportunity to grow makes us more likely to have a challenge response rather than a threat response. When there is a stressful experience, chances are good we’re going to learn something from it. If we see it as a threat, we’re either going to run from it or fight it. We’re not going to learn anything except to run or fight better.
• To be clear, this is not about saying, “Bring on the stress!” It’s about building confidence in our ability to handle it. If we see the stressful experience as an opportunity to grow, then our brain says, “What can I learn here?” giving us the opportunity to learn. This builds confidence in our ability to handle this event and the next one. And chances are good there's going to be a next one!

If you are interested in learning more about navigating chronic stress as a parent or caregiver raising a child with behavioral health challenges and/or special healthcare needs, take MPN’s virtual course “Caregiver Wellness: Navigating Chronic Stress” on our learning platform.