During my years as a child life specialist in the United States, I provided psychosocial care to children and families who were facing a hospitalization. My job was to predict potential stressors and 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 not only physically, but 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 – including a child’s health condition.
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 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 him in any way, let alone in a way that would help him feel empowered and grow.
As my language skills improved, so did my confidence in dealing independently with medical issues. These minor medical events, though, made me think about those of you who are globetrotting with a child who has a serious medical condition. You are juggling languages, diverse medical systems, and prescriptions. Varying philosophies about treatment protocols and diverse beliefs about your role as a the parent can be overwhelming. There are school issues and social issues to address, not to mention your child’s emotional and developmental well-being.
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 happens 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?
After speaking with parents who have faced questions like these, I conclude there are as many answers as there are families abroad navigating healthcare. However, 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) better, stronger, wiser, and more 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!
First: Be the leader of your child’s health care.
You are the subject matter expert on your child and the constant in your child’s treatment. 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.
Make a point to notice how your child copes with potentially challenging tasks. Is she someone who likes to have all the details way in advance? Or, is he someone who copes better with less information and time to think?
Think of yourself as your child’s health care coordinator. It really is possible to coordinate everyone on the “team”. Before you move, ask your doctor to help you with referrals for your next destination. If your doctor is unable to help, ask around in online expat groups. Be open to the idea of “interviewing” several doctors before deciding which one fits. It seems obvious, but choose medical providers with whom you can communicate easily.
At the same time you ask for referrals, you can also request a copy of child’s medical records. Carry a copy of those records with you on the plane. 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, or shortly after, you arrive in a new country, locate the nearest hospital emergency room and pharmacy, including the on-call number and location. Post emergency numbers on the fridge, along with what to say if there is an emergency when you are not at home. Practice this as a family!
Get school nurses, counselors, and teachers on board in empowering your child. Maybe his condition can be an opportunity to develop leadership skills and raise awareness.
If your child has a condition that must be monitored throughout the night, host activities like sleepovers at your house so that she doesn’t miss out on normal, age-appropriate social opportunities.
Second: Notice what is true and factual vs. opinion, tradition, or belief.
This goes for both you and the medical culture. If you haven’t had any intercultural communication training, it would be beneficial. Being able to assert yourself in the most effective way within the cultural context is vital. Knowing what is medically necessary verses what is a cultural belief takes some greater understanding of the culture at large.
Know that different perspectives can be a good thing, even “liberating”, as one parent shared, because you get to see that there are many ways to solve an issue. Tame your expectations; be open to “different”ways of effectiveness.
Third and Fundamental: Prioritize self-care.
Interview for qualified babysitters or helpers who are undaunted and willing to be trained to care for your child, even if an emergency arises. Give yourself time every day to be alone, move your body, and have contact with other adults who fill you up. Even 15 minutes a day is worthwhile and will make a difference.
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, so you can be the 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 create solutions.
You are stronger than you know and you will surprise yourself.
Author: Carolyn Parse Rizzo
Carolyn is a Certified Child Life Specialist, Healthcare and Vitality/Core Energy™ Coach and trainer living in Northern Italy with her multi-cultural, bi-lingual family. Her private practice, Interval Coaching and Consulting, supports all sectors of expats in building resilience through healthcare challenges and change. An expressive-arts enthusiast, Carolyn feeds her soul and builds grit by singing vintage tunes in local wineries with a 20 piece big band and practicing her Morning Walk up the foothills of the Alps. Carolyn’s definition of “home”? Home is where you feel like you!