How Can You Advocate for Your Child in a Medical Setting?

Navigating medical environments can be challenging for adoptive families. This article explores why adopted children may face challenges in medical settings and how adoptive parents can advocate for the unique healthcare needs of their children and work with providers to bridge the information gap.

This article is the first installment in an educational series aiming to improve health literacy and empowerment for adoptive families when assembling a biological family health history for their adopted child(ren).

Because of the importance of early intervention and encouraging ownership and responsibility of one’s health from an early age, the information in these articles are geared towards parents and guardians of adopted children, but it is also useful for older children and adolescent/adult adopted persons who are assembling their own family health history. We want to acknowledge the diverse backgrounds and stories of all adopted persons and provide information that can help educate people at various stages of their own journeys.

Why Advocacy for Adopted Individuals in Healthcare Matters

The U.S. Centers for Disease Control and Prevention (CDC) and other organizations and professionals in the medical field have identified family health history as one of the most important factors to consider when assessing a patient’s risk for certain medical conditions and health outcomes. This encompasses factors such as genetic risk, prenatal and early childhood environmental exposures, and the age of onset of chronic illnesses. However, many adopted persons lack this information, leading to limitations in the quality, precision and effectiveness of the preventative care they receive.

For adoptive parents, these common questions revolving around unknown family medical history often expose the systemic gaps in their child’s care and that their child may encounter throughout their lives.

Why is Adoption Acknowledgement so Important in Medical Settings, and Why is it Often Overlooked?

Social determinants of health are social factors in a person’s life, such as income, employment status, education, gender, sexuality, race and ethnicity, that all impact a person’s access to healthcare and their health outcomes or predispositions to certain conditions. Adoption is considered a social determinant of health, yet it is not as widely explored or acknowledged as some of the previously mentioned aspects of social identity in medical settings.

Ignoring or overlooking adoption status in healthcare settings has real-life consequences, such as misdiagnoses, overlooked genetic risks or emotional distress during appointments. These experiences are not uncommon among adopted persons, signaling a need for more awareness and provider training.

There are a multitude of potential reasons why adopted status is often not treated as a core social identity that shapes an individual in a medical setting. A couple have been identified as follows:

• A structural gap in medical training and education: Many clinicians receive little to no training specifically addressing how to discuss adoption and its relation to an individual’s health. Many physicians and medical students reported receiving very little training and guidance on treating adopted patients. Several recognize they possess knowledge gaps in appropriate preventive screening and genetic testing for adopted persons, as well as the impact of adoption on patient mental health. However, several physicians report drawing upon experiences working with other identity groups (such as immigrants and refugees) who also have limited access to family medical history. Additionally, many desired more training on the topic, signaling a potential increase in awareness and interest in adoption medicine.
• Systemic assumptions about “family history”: Although, over time, the American medical system has begun to identify and incorporate the concept of diverse family structures into the healthcare system, many assumptions about family history remain. The current medical model often assumes a biological connection and a stereotypical, heterosexual, monocultural, two-parent household. These assumptions can lead to feelings of otherness, alienation and invalidation for adoptive families, and may deter them from or leave them hesitant about seeking future medical care.

What Information Can You Assemble for or Request from Your Provider?

As you assemble medical information for/with your child, make sure to keep documents and information organized and in a safe place. You can also use digital tools such as The Surgeon General’s My Family Health Portrait, which can guide you in determining which health history data may be important to seek out and what details you should include. Below are two potential starting points for assembling helpful information regarding your child’s family medical history.

• Starting with what’s available to you: Your adoption agency or attorney may have access to medical records and summaries. Depending on the open/closed status of your adoption, these records may have identifying information censored/redacted. Access to these records may vary based on your state’s policies. If you are aware of any early or prenatal environmental exposures, these may be important to record as well. If you are in an open adoption and in contact with your child’s biological family, and they are willing to share their family medical history, this is another avenue of obtaining information.
• Asking your provider about testing and reports: Because of advancements in medicine and technology, information about your child’s family medical history can be partially “reconstructed” via genetic testing and screenings. If you have any knowledge of your child’s biological family having a history of heritable illnesses, such as certain types of cancers, or certain neurological or cardiovascular diseases, you can also bring these up to your provider to have your child specifically screened for these genetic variants. It’s important to remember that these tests, while helpful, are not a complete diagnosis, and many genetically heritable diseases can be mitigated through a healthy lifestyle.

*Some of the topics discussed here, such as document access and genetic testing, will be explored in more detail in future articles.

Advocating for the Importance of Adoption in Medical Encounters and Patient Identity

Advocating for your child in a system that is not currently designed for them can be challenging. Your child may be one of the few or the only adopted patients your provider has treated in their career (unless you are working with an adoption medicine specialist). Normalizing conversations about adoption with your doctor can help build rapport and trust while also improving the quality of care for your child. In the medical field, many treat adoption as a solely pediatric issue, when this is not the case at all. To empower and validate adopted patients, it’s important to frame adoption as a lifelong identity, not a one-time event. Talking to your provider about the importance of adoption can help you learn and grow together. Here are considerations when having these conversations:

• Centering adopted person-specific needs and identity: Many families going through the adoption process are familiar with the “child-centered approach” of adoption. In short, this means prioritizing the dignity, needs, desires and future of your child throughout the process of adoption, and it is a lifelong commitment when parenting any child, adopted or not. This concept carries over to how adopted persons should be treated in medical spaces. Encourage providers to note “adopted” status not as a deficit, but as a meaningful context to understand your child and their development.
• Partner with your provider: Supporting your child’s health requires advocacy, open-mindedness, proactiveness, and curiosity from both your family and your child’s healthcare team. A good provider will be engaged and willing to learn and grow with your family throughout the process, regardless of their previous experience with adoption in their personal lives or treating adopted patients. You can share helpful resources on topics such as using adoption-positive language to help your provider understand how to best uplift and acknowledge the importance of your child’s identity. Below are some example phrases you can use to ask your doctor about services that can help “reconstruct” family medical history, such as preventative screening and testing:
  • “Since we don’t have access to full family health information, could we focus on preventive screening options that don’t depend on that data?”
  • “What are some of the preventative screenings/tests that you recommend, given what we currently know about my child’s background?”

Empowerment Through Advocacy

Although the current knowledge about adoption as a social determinant of health is limited and not thoroughly explored, research and advocacy revolving around how social identity shapes healthcare experiences are continuously growing and being incorporated in medical practice. Adoption advocacy in healthcare is essential to promote equitable access to comprehensive and high-quality care.

This process can be challenging and emotional, but also fulfilling and insightful. The experience of every adopted person is different, but you and your family are not alone. Adopted people and adoptive families should continue learning about their rights and speak up for their needs in medical settings. This is a process of perpetual education on all levels (child, family, provider) and building strong partnerships with your child’s doctor, as well as other important individuals involved in your child’s development, requires empathy, curiosity, and a willingness to learn and change.

If you need support, The Cradle is here to help. Our adoption-competent therapists can provide the support you and your family may need to navigate adoption’s challenges so you can better celebrate its many rewards. Fill out our online inquiry form or call us at 847-475-5800 to speak with one of our counselors.