During my years as a child life specialist in the United States, I provided psychosocial care to hospitalized children and their family members. Essentially, my job was to predict potential stressors based upon my knowledge of child development and stress and coping theories and then to help shift the perception of threat so that kids would feel less anxious and more in control. The idea was to help kids take an active role in their own medical care, allowing them to thrive physically, emotionally, and developmentally. I was part of a team of health care professionals who were dedicated to treating the whole child within the context of their family culture.
When I became an expat and then a parent, the empowered patient advocate in me was quickly silenced by an awkward language barrier. The differences in Northern Italian hospital pediatrics culture and patient-care philosophy were disorienting. I felt helpless in preparing my child for routine procedures because I was no longer able to get a clear idea of what would happen. It seemed futile to rely on hospital medical personnel to prepare (or distract) him in any way, let alone in a way that would help him feel empowered and grow. I felt like a failure as a parent and a child life specialist.
As my language skills improved, so did my confidence in dealing independently with medical issues. However, minor medical events like allergy testing and ENT exams got me thinking about those of you who are globetrotting with a child who has a serious medical condition. You are juggling languages, diverse medical systems, prescriptions, and varying philosophies about treatment protocols.
Right when you've got it figured it, your family receives a new assignment. It can feel like the rug is being pulled out from under you again and again and that's not even taking into consideration the status of your child's health.
So Much to Consider
From country to country, the diversity in beliefs around your role as the parent of a child with special health needs can be confusing. Are you part of the care team with valuable insight and information, or are you expected to act as the silent and obedient recipient of medical "truth"?
You may have school and social issues to address, not to mention your child’s emotional and developmental well-being as they deal with all the usual transitions that come with a new assignment. As a family, the mental and emotional flexibility you all must develop in order to adapt and thrive may seem impossible.
You are looking for continuity, consistency, and a high quality plan of care that makes sense. You want your whole child to be recognized, for their physical and emotional treatment to be personal and aligned with your family’s beliefs and values.
- How do you manage all this when crossing cultures?
- What happens when you begin your journey in a culture that views you as a vital part of their multidisciplinary team, but the next culture marginalizes your contributions?
- What decisions should you make when the medical team in one country believes it has the “right” solutions, but doctors in the next country have a different set of “right” answers?
- How do you make sound decisions when you receive contradicting advice and input from medical personnel?
Mindset and Action: You've Got This!
There may be as many answers to these questions as there are families abroad navigating healthcare. And still, there are specific things you can do and a mindset you can nurture that will help build the kind of resilience that not only gets you through it, but makes you (and your family) more engaged, confident, and courageous than you were before.
Much of the advice below comes from parents who have been where you are. Globally mobile families are hardy and resourceful and this is only the tip of the iceberg! If you have specific tips to add that have worked for you, please contact me and I'll get the word out!
RESILIENCE MINDSET #1
YOU ARE YOUR CHILD'S MULTIDISCIPLINARY TEAM LEADER
You are the subject matter expert on your child and the constant in your child’s treatment. Know their coping style, be proactive, and think of yourself as your child’s health care coordinator or multidisciplinary team leader.
From the start, If it makes sense, ask your child’s physicians to write in your child’s medical records in English, so there is a better chance that they are understood by your next medical team.
Before you move, ask your child's doctor to help you with referrals for your next destination. If your doctor is unable to help, ask around in online expat groups. There are others like you!!
At the same time you ask your current medical provider for referrals, you can also request the release of your child's medical records. Carry the originals with you on the plane and have copies made for the new medical personnel.
Be open to the idea of “interviewing” several doctors before deciding which one fits, and though it seems obvious, choose medical providers with whom you can communicate easily. If this is not an option, organize for translation services. Some hospitals or health districts provide liaison services that help with translation, but be prepared to coordinate your own translation. You may have to pay someone or think about who you know who would be capable and willing to be available either virtually or via speaker phone at the time of your appointment.
If you're new at this, educate yourself to the best of your ability. Check out a variety of national websites related to your child’s condition. Look for (or build) a network of parents that make you feel hopeful and supported. Find a mentor who’s parented through the same medical condition.
WHAT IS A COPING STYLE?
Children all have a dominant way of dealing with stress. Some are sensitizers; they feel calmer and more in control when they know every detail and have time to plan; while others are catastrophizers, using details to feed their worst-case scenario ruminations. They want details, but experience an increase in stress when too may details are shared too early.
Minimizers, on the other hand, want the details broken down into manageable chunks over a period of time. Initially, they downplay the information they receive in order to cope with uncertainty. Minimizers may need more time to process and prepare themselves, coping best one challenge at a time.
Finally, we see deniers who do not want the information and push away what they do know. We don't always have a clear picture of their fears and because they don't ask questions when they don't understand. This leads to untrue assumptions and avoidable misunderstandings.
Pay special attention to how your child copes best under stress and what triggers a stress response. Is she someone who likes to have all the details way in advance or likes to practice first? Or, have you noticed he is a "worrier", someone who copes better with less information and time to think? ( Not sure? Let's explore this together.)
Why is this important? Because you are your child's main information filter. You know how they face challenging situations. If multiple procedures or treatments are coming your way, it's important to set the stage for success.
HOW CAN I BE MORE PROACTIVE?
Parents like you stress the importance of advance planning and preparation. Avoid getting stuck in reaction mode!
Before, or shortly after you arrive in a new country, they suggest locating the nearest hospital emergency room and pharmacy; the local pediatrician and pharmacist usually post the number and location of their on-call providers for off hours and holidays. Be sure you know where to go if the office or usual pharmacy is closed.
As soon as you move in, post emergency numbers where everyone can see them. In the local language, write out what to say in an emergency. Practice emergency drills as a family.
SCHOOL and SOCIAL LIFE
Get school nurses, counselors, and teachers on board in empowering your child. If it seems right for your child and the setting, explore opportunities for him to develop leadership skills and raise awareness about her condition.
One parent of a child with Type 1 Diabetes, requiring close monitoring, chose to host activities like sleepovers at their house allowing her child to participate in normal, age-appropriate social opportunities without bringing undue attention to the situation.
RESILIENCE MINDSET #2
TRUTH AND FACT VS. OPINION, TRADITION, OR BELIEF
Being able to assert yourself in the most effective way within the cultural context is vital. Intercultural communication training can be especially beneficial in this context. Knowing what is medically necessary, verses what is a cultural belief, takes some greater understanding of the culture at large.
Intercultural coach and trainer, Elisabeth Weingraber-Pircher of Kultur.elle says it really helped her family to be clear about what they believed as they moved from the UK to Germany to Brazil during their son's cleft lip and palette restructuring. "We asked ourselves, 'What do we want? What is fundamentally important to us?'"she says. "Our child was born in to our family; we have to make informed decisions that are coherent with our family values."
Know that different perspectives can be a good thing, even “liberating”, says Elisabeth, because you get to see that there are many ways to solve an issue. Tame your expectations; be open to “different”ways of effectiveness. Be open to pleasant surprises!
For example, in addition to their daughter's five day hospitalization being completely free, one American family living in a small village near Trento, Italy was delighted to find that fresh goat milk was readily available and at a much lower cost than the expensive processed dairy-free baby formula she'd had to buy for her highly allergic baby in the United States.
RESILIENCE MINDSET #3
YOUR SELF-CARE IS JUST AS VITAL AS THE CARE YOU GIVE TO YOUR CHILD
This period of your life is but a chapter of many, though it might seem like it will last forever. It's not selfish to pace and nourish yourself; it's the most loving thing you can do for your family.
Relax and recuperate. I know it seems impossible sometimes, but that's exactly when you need it most. All functioning systems must recuperate from stress in order to continue normally. If you don't allow for this recovery phase, your stress response never ends. This leads to caregiver burn out.
Give yourself the give of five minutes. If you end up having more time, even better, but allow yourself five: minutes to be alone, to move the body, to be still, to create, to daydream, to pray, to connect with nature, or to make contact with other supportive adults. Start with five or ten minutes and see where it goes from there.
Prioritize balance in your life. Start interviewing as soon as possible for qualified babysitters or helpers who are undaunted and willing to be trained to care for your child, even if an emergency arises. Once this system is in place, start planning adult time. And, when you do get that time, be sure it's with people who light you up!
If you are stuck and not sure where to begin, work with a coach to help you identify and develop the resources you already have within you, so you can be the healthcare team leader and parent you want to be. Seek mental health support if you have healing to do. Acknowledge your grief. Don’t allow yourself to be isolated. There really are others out there who know what it’s like and can help you re-energize and create solutions.
You can hear a little more about how I use the Core Energy coaching process in working with adult patients, their partners, and parents of kids with healthcare challenges here on the Mindful Expat podcast with Dr. Dana Nelson.
I would love to hear from you. If you've got a healthcare abroad story to share or would like more information about how I can help you and your family build resilience and vitality through healthcare challenges abroad, book an appointment to chat! I'm looking forward to it.