With your child’s diagnosis come all sorts of new feelings, information, relationships and systems. It is often overwhelming. This resource is intended to support you as you navigate this new world and your important role on your child’s healthcare team. It features video clips of parents sharing some of what they’ve learned over time.
1. How will I ever do this?
In the beginning, it’s common to experience a range of thoughts and feelings:
- When your child is first diagnosed you may feel overwhelmed, scared, sad, or perhaps relieved. “Is this really happening?” “Will I be strong enough?” “What will this mean for us?”
- While there’s nothing easy about these thoughts and feelings, working through them will help with coping.
- All along the way, paying attention to what’s going on inside of you will help clarify what’s important right now—including, when to listen or speak up, when to take action, or even when to take a break.
We’ve learned the better you know and understand yourself, the better you will be in communicating and partnering with your child’s health care team.
2. What is my role on the healthcare team?
With this new diagnosis, you are entering into a new set of relationships with the healthcare providers who care for your child—the doctors, nurses, therapists and others.
- Each member of your child’s health care team makes unique and important contributions, including you.
- Health care providers contribute their medical knowledge and experience.
- You contribute personal knowledge and understanding of your child and family.
How you approach these relationships makes a difference. They work best when grounded in shared information, mutual respect, and trust.
Guidance and tips for parents partnering with health providers from Janice Fialka, parent, social worker, author and national speaker.
Partnering With Providers – Learn more from Medical Home about the key role you play with your child’s health providers.
3. Where do I begin?
You make an important difference in your child’s health and well-being.
- It’s a steep learning curve. There is a lot to do and learn. And, you start one step at a time.
- In the beginning you will probably be listening and asking clarifying questions to gain a better understanding of your child’s health care needs.
- Over time you will begin to share observations, give feedback, and offer suggestions.
All along you will be a source of comfort and emotional support for your child—in a way no one else can.
Partnering With Providers – Ideas and suggestions from Medical Home for getting started with a new doctor and/or improving a relationship you already have.
Diagnosis Information – A list of pediatric chronic health conditions and links to websites that provide an explanation of the condition and additional resources.
4. How will I change over time?
For most parents it is reassuring to learn they will grow more confident and capable over time. With experience, you will learn what works best for you and find ways to make it happen.
Over time you will come to trust you have what it takes to do what you need to do. This is called parental self-efficacy. Research tells us that it is built in four ways:
- With each interaction with health care providers that goes well your confidence will grow. (Mastery)
- “If they can do it, I can do it.” You will meet and get to know other parents who face similar challenges. Seeing families find ways to integrate their child’s needs into their “new normal” offers hope and guidance. (Vicarious Experience)
- As you find ways to effectively manage strong emotions, you will bring greater competence to your day-to-day responsibilities and challenging situations. (Managing Strong Emotions)
- Receiving well-grounded, positive feedback from those you trust and respect will help you believe in yourself and motivate you to engage and persevere. (Social Persuasion)