As the parent or caregiver of an older pre-teen or teen with a blood or bleeding disorder, guiding your child through the healthcare system can be challenging. It is essential to teach them about their rights and responsibilities as patients. These include informed consent, timely access to specialty care, confidentiality, and understanding health insurance coverage and costs. To help your pre-teen or teen effectively manage their condition and collaborate with their care team, encourage them to maintain a healthy lifestyle, actively engage with health care providers, and make informed decisions.
This section of Talking to Your Health Care Provider covers:
Your Child’s Rights as a Patient
Your Responsibilities as a Patient
Emotional Intelligence in Communication
P.A.C.E Approach for Effective Communication
Your Child’s Rights as a Patient
Navigating the healthcare system can be complex, especially for people with blood or bleeding disorders. By understanding your child’s rights, you can effectively manage their disorder. In collaboration with your child’s care team, this knowledge helps your child achieve the best possible health outcomes.
Anyone who seeks health care treatment has the following rights4:
Informed consent is your child’s right. This right ensures you understand the risks, benefits, and alternatives of any suggested medical treatment for your child. Before your child starts any treatment, their health care provider should provide clear explanations. They should answer your questions to help you make an informed decision. Your consent should be voluntary. Your consent can also be withdrawn at any time if you change your mind or if you find new information.
When your child has a blood or bleeding disorder, they will need specialized care. This may involve appointments with health care providers who specialize in treating blood or bleeding disorders (hematologists) or other medical specialists. Timely access to specialty care is important. When your child can access specialty care you can manage your child’s condition effectively, prevent complications, and make sure your child receives the right treatment.
Confidentiality is a critical aspect of healthcare. Your child’s personal medical information should be protected. Personal medical information should only be disclosed to authorized individuals on a need-to-know basis. Health care providers must follow strict privacy laws and regulations, such as HIPAA5 in the United States. These rules keep your child’s sensitive health information safe. These protections help to maintain trust between patients and providers and support open communication.
Understanding your child’s health insurance coverage helps you navigate the healthcare system and make informed decisions about your child’s care. Your child’s insurance provider should give clear, easily understood information about their coverage. This should include any limitations, exclusions, or co-payments. With this knowledge, you can better choose treatments, health care providers, and plan for out-of-pocket expenses. If you want more information about health insurance, please go to Insurance Basics.
Your child should have access to a variety of health care providers, including specialists who are experienced in treating blood or bleeding disorders. This choice allows you to select a provider for your child that aligns with your preferences, needs, and values. Both your child’s health care provider and insurance plan should offer information about available options. This should include provider education, certifications, experience, and patient feedback. This information will help you make an informed decision for your child.
Openness about the costs of your child’s healthcare is vital for managing your finances and making informed decisions. Your child’s health care provider and insurance company should provide clear, easily understood information about the costs of your child’s care. This should include deductibles, co-payments, and out-of-pocket maximums. Additionally, they should explain the costs of specific treatments or procedures. This will help you to predict expenses and make the best decisions for your family.
Your Responsibilities as the Parent or Caregiver of a Patient
Living with a blood or bleeding disorder requires a proactive approach to health management. To ensure your child’s well-being and minimize complications it's important to prioritize a healthy lifestyle for your child. By taking charge of your child’s health, becoming an informed advocate, and communicating regularly with your child’s care team, you can overcome any challenges and ensure the best health for your child.3
Here are some things you can do:
A healthy lifestyle will help you with overall well-being and minimize complications. Following a healthy lifestyle may include a balanced diet, regular physical activity appropriate for you, getting enough sleep, and managing stress. Additionally, you should follow any specific recommendations from your health care provider, like avoiding certain activities or taking prescribed medications as directed.3
If you want more information about healthy eating, please go to Food Choices.
If you want more information about physical activity, please go to Physical Activity.
If you want more information about managing stress, please go to Managing Stress.
It is important to become familiar with your child’s health insurance plan and understand its coverage limitations. This knowledge helps you make informed decisions about your child’s care. It will also help you to anticipate out-of-pocket expenses and avoid unexpected costs. You may need to research or ask questions about your child’s coverage. You can ask which providers and treatments are included, any exclusions, and details about co-payments, deductibles, and out-of-pocket maximums.3
If you want more information about health insurance, please go to the Financial Health and Insurance section.
Taking an active role in your child’s healthcare decisions is important to ensure your child’s well-being. This includes asking questions, discussing any concerns, and sharing your preferences with your child’s health care provider. Collaboration with providers allows for a more personalized approach to care, tailored to your and your child’s unique needs and values. Remember that you and your child are the most important advocates for your child’s health. Your input is needed to shape your child’s healthcare journey.3
Once you and your child’s health care provider have agreed upon a treatment plan, follow the plan closely. This may include attending scheduled appointments, taking medications as prescribed, following any recommended lifestyle changes, and completing necessary tests or procedures. This ensures that your child’s care is consistent and effective. It will also help to prevent complications and optimize your child’s overall well-being. Remember that communication is key. If you have concerns or difficulties following your child’s treatment plan, discuss them with your child’s health care provider to find a solution that works for all of you.3
Emotional Intelligence in Communication
Emotional intelligence is important when communicating with your child’s health care providers. This includes social skills, self-regulation, motivation, empathy, and self-awareness. Emotional intelligence can improve interactions with your child’s provider. Quality interactions lead to better understanding, trust, and more effective care.1
Having strong social skills helps you communicate effectively with your child’s health care provider. These will foster a positive relationship and ensure that your and your child’s concerns and preferences are understood. By actively listening, maintaining eye contact, and showing gratitude, you can collaborate effectively and encourage open dialogue.1
Self-regulation is managing your emotions and remaining calm when talking with your child’s health care provider. This can be particularly important when discussing sensitive topics or receiving difficult news. By staying calm and composed, you can better process information, ask relevant questions, and make informed decisions about your child’s care.1
Being motivated to help your child take charge of their health and actively participate in their care is important for your child’s well-being. You can show a proactive attitude by seeking information, asking questions, and following your child’s treatment plan.1
Empathy allows you to understand and appreciate the perspective of your child’s health care provider. It will foster a sense of shared respect and collaboration. Recognizing the challenges and pressures that health care providers face can help you be patient, compassionate, and understanding. This will contribute to a stronger patient-provider relationship.1
Self-awareness involves recognizing your emotions, strengths, weaknesses, and personal biases. By being self-aware, you can better understand how your emotions and beliefs might affect your interactions with health care providers. When you are self-aware you can manage your expectations, address any misunderstandings, and have an open mind. This will allow for more effective communication and decision-making.1
P.A.C.E. Approach for Effective Communication
The P.A.C.E. approach (Presenting, Asking, Checking, and Expressing) offers a structured method to improve communication and understanding between you and your child’s care team. You can do this by clearly stating your child’s symptoms and medical history, asking relevant questions, verifying your understanding of the information given, and expressing your feelings and preferences. By using the P.A.C.E. approach you can foster a strong patient-provider relationship. This will promote personalized and effective care that is tailored to your child’s unique needs and values.2
- Clearly describe your child’s symptoms, medical history, and concerns to your health care provider.
- Be honest and thorough to ensure that your child’s health care provider has all the necessary information.
- Bring your child’s treatment log to your child’s appointment.
- Inquire about your child’s diagnosis, treatment options, and any potential risks or benefits associated with their care.
- Don't be afraid to ask more questions if you don't understand something or need more information.
- Confirm your understanding of the information provided by your child’s health care provider.
- Restate what you have learned to ensure that you and your child’s provider share the same understanding.
- Share your feelings, preferences, and concerns with your child’s health care provider.
- Open communication helps to build trust ensuring that your child’s provider takes you and your child’s needs and values into account when making treatment decisions.
- Goleman, D. (2023, March 3). Emotional Intelligence Has 12 Elements. Which Do You Need to Work On? Harvard Business Review. https://hbr.org/2017/02/emotional-intelligence-has-12-elements-which-do-you-need-to-work-on
- National Hemophilia Foundation. (n.d.). Communicating with Providers [Slide show; Presentation].
- Patient Rights | ama-coe. (n.d.). https://code-medical-ethics.ama-assn.org/ethics-opinions/patient-rights
- Patient Responsibilities | ama-coe. (n.d.). https://code-medical-ethics.ama-assn.org/ethics-opinions/patient-responsibilities
- Rights, O. F. C. (2022, October 19). Summary of the HIPAA Privacy Rule. HHS.gov. https://www.hhs.gov/hipaa/for-professionals/privacy/laws-regulations/index.html