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Coping with repeated hospital stays: a guide for parents

Coping with repeated hospital stays: a guide for parents

Dr Frankie Harrison

September 9, 2024

Calling your local hospital your "second home"? We see you. As does the team at Miracle Moon, a podcast and community supporting NICU families. Here, co-founder and clinical psychologist, Dr Frankie Harrison, shares her advice for paeds ward regulars.

I want to share Maria's story with you. Maria is the mum of an eight-year-old boy, Leo, who has complex medical needs. Over the past few years, Maria has become all-too familiar with hospitals.

Each time Leo has to be admitted again, Maria finds herself feeling overwhelmed and anxious. The sterile smell, the beep of machines, and the sight of hospital beds pull her back to the early days when Leo was first diagnosed.

Those moments were filled with fear and uncertainty and, despite how much time has passed, every hospital visit triggers a flood of those old emotions. It feels like she’s reliving her trauma as well as being exposed to new high stress and traumatic events.

Maria’s reaction is not unusual.

For many parents, repeated hospital admissions can stir up old feelings of stress and trauma as well as having to cope with the present moment worries. Our brains are wired to associate certain places or situations with past experiences, especially when those experiences involved high levels of anxiety or fear.

This is our brain's way of attempting to protect us from harm, to try and get us to avoid situations that cause us to feel threatened and unsafe. But for many of us, hospital admissions and visits are a part of our life that we can’t avoid.

So, how do you cope when hospital visits feel like too much to bear?

As a clinical psychologist and a parent who has walked the difficult path of neonatal care, health issues, and repeated hospital admissions, I understand firsthand how exhausting and emotionally draining this journey can be.

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I support parents who have been through neonatal care and a lot of those parents have children with medical needs – whether they’re facing physical, behavioural, cognitive, or developmental challenges.

These parents often face an ongoing, tricky journey that includes frequent hospital visits for treatments, emergencies, or routine check-ups. It can feel overwhelming, like you’re constantly bracing for the next challenge and waiting for something to go wrong.

Part of my role is to be there for parents as they navigate the mental and emotional toll of caring for a child with complex health needs, helping them find ways to cope with the relentless stress and uncertainty.

Here's why hospital admissions trigger stress.

When you're facing a hospital admission, the current stress or threat can feel overwhelming on multiple levels. As a parent, you're not only worrying about your child’s immediate health but also juggling a range of emotional and practical challenges too.

You might feel out of control, unsure of what’s happening or what the outcome will be.

Hospitals can bring a deep sense of uncertainty – waiting for test results, trying to understand medical jargon, having to advocate for your child and making decisions with incomplete information. The threat to your child’s safety is always looming, and your mind may spin into worst-case scenarios, imagining all the "what ifs" that can often feel intolerable.

In the midst of this, you may find yourself trying to manage hospital staff – advocating for your child, seeking reassurance, or simply trying to get clear answers.

You’re likely also navigating practical tasks like keeping track of medications, staying organised with appointments, and maintaining a sense of normalcy for your child, even in a hospital room. You may even turn to Google or other sources to gather more information, seeking to gain some control, but this can often fuel anxiety rather than calm it.

Meanwhile, you’re trying to stay calm, supportive, and emotionally available for your child, despite the inner chaos you're feeling. And on top of all that, there’s the weight of the past. If you’ve been through hospital admissions before, those experiences can resurface. Maybe you felt helpless, terrified, or even guilty for not being able to make things better.

Memories of past fears and traumatic moments can come flooding back, making the current situation feel even more distressing. This combination of present-day stress and the emotional echo of past hospitalisations creates a layered, complex response.

Without strategies to cope, it can feel like you’re battling two storms at once – one from the past and one in the present.

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So, what do you do when it feels like you are in the eye of a storm in a hospital setting? Here are some strategies.

1. Grounding techniques

Grounding can help bring your focus back to the present moment, reducing the intensity of overwhelming emotions. Typical grounding gets you to focus on what is happening in the present moment, right here right now.

An example of this is the 5-4-3-2-1 exercise. To practise this, identify:

5 things you can see

4 things you can touch

3 things you can hear

2 things you can smell

1 thing you can taste.

However, for a lot of parents in hospital settings, this can feel triggering as you maybe don’t want to zoom in on the sounds, the sights and the smells of the hospital environment.

A way of being able to still ground in the present moment without taking in your immediate surroundings is to develop a grounding kit to bring with you to the hospital. This might include sensory items like a scented hand cream, a smooth stone to hold, a favourite photo, some chewing gum or a playlist on your phone.

Think about all of your senses and what you find soothing. These small items can help you stay connected to the present, soothe you and help you to regulate your nervous system.

2. Paced breathing

The power of slow, controlled breathing is often underestimated. When we’re in stressful, anxiety-provoking, or threatening situations, we’re told to slow our breathing because it helps shift our nervous system from "threat mode" to "safety mode."

Imagine being chased by a bear – your body would instinctively enter fight, flight, or freeze mode.

In that state, your breathing would either speed up or become shallow, as your body prepares to face danger. However, by consciously slowing your breath, you signal to your nervous system that it’s safe to shift out of survival mode and into a calmer, more grounded state.

When we’re stuck in fight, flight, or freeze mode, it becomes much harder to make decisions, think clearly, or advocate. By starting with slow, intentional breathing, you help create the space needed to calm your mind and body.

So, when you feel anxiety building, focus on your breath. Inhale deeply for a count of four, hold for four, and exhale for six. This technique helps regulate your body’s stress response, allowing you to find calm, even in a hospital environment that feels anything but peaceful.

3. Be kind to yourself

It’s so easy to be hard on yourself, especially when you feel like you should “handle” these situations better. But the truth is, managing repeated hospital admissions is incredibly tough. We don’t often get to choose whether we shift into survival mode, fight, flight or freeze or not – it's unconscious and automatic.

Acknowledge that it’s okay to feel overwhelmed, scared, or frustrated. Give yourself permission to feel those emotions without judgement. Talk to yourself how you would do someone you love.

4. Talk about it

Whether it’s with a friend, a therapist, or a support group, talking about your feelings can be an important part of coping. Sharing your experiences with someone who understands can make the load feel lighter, and it helps to process what you’ve been through instead of keeping it all bottled up inside.

5. Play Tetris

It might sound surprising, but there’s evidence to suggest that playing Tetris can help prevent the brain from laying down events as traumatic memories.

Research shows that visual and spatial tasks like Tetris can disrupt the brain’s ability to form vivid, intrusive memories of stressful events. Playing Tetris during or after a traumatic experience has been found to reduce flashbacks and help people feel more in control.

6. Accept help and support

It’s natural to want to take on everything yourself, but remember that it’s okay to ask for help. Whether it’s accepting a meal from a friend, letting someone watch your other children, or leaning on your partner for emotional support, you don’t have to carry the weight of your child’s hospital stay alone. Surrounding yourself with a support system can ease some of the stress.

7. Finding others who’ve been there

Connecting with other parents who have gone through similar experiences can be incredibly comforting. Knowing that you’re not alone in your journey can provide a sense of community and understanding that’s hard to find elsewhere.

You might find these connections through support groups, either in-person or online, where you can share stories, advice, and coping strategies. You can find more at Miracle MoonThe NICU Space

8. Creating space to process

When you’re back home, it’s really important to carve out time to reflect on what you’ve been through. Hospital stays can be all-consuming, and once the crisis passes, it’s easy to push those feelings aside.

Try to take time to process your experience – whether that’s through journaling, talking to a trusted person, or simply allowing yourself a quiet moment to breathe and reflect.

Processing helps in releasing some of the emotional tension and prepares you for future visits with a clearer, calmer mind.

9. Access professional support

If you find that the stress and anxiety of repeated hospital admissions are becoming too overwhelming to manage on your own, it may be time to seek professional support.

Therapists who specialise in supporting parents of children with medical needs can help you navigate the huge number of emotions that come with caring for a child facing health challenges. They understand the toll this journey takes and can offer tailored strategies to manage trauma, anxiety, and ongoing stress.

You don’t have to go through this alone. There are options available, whether through the NHS (in the UK), charities that provide mental health support, or private therapy if that feels like the right fit for you.

Seeking help isn’t a sign of weakness – it’s a vital step in ensuring you can continue to be there for your child while also taking care of your own mental health. Having a space to process your feelings with a professional can provide relief and help you build coping tools for the road ahead.

You are doing an amazing job for your child, and taking care of your own mental health is a vital part of that journey. Remember, it’s okay to feel overwhelmed, and it’s okay to ask for help.

You don’t have to go through this alone.

Find support and community via the Miracle Moon website, podcast and Instagram account.