The research-backed and age-appropriate resources on this page will help you and your family feel informed, safe, and like you have a plan for even the hardest conversations and moments along your health journey.
This guide goes over how to use the resources on this site, explains The Peanut Butter and Jelly Approach to talking to your child about your condition, and provides an overview of who this site is for.
Learn how to prepare other caregivers for what to do if you’re unexpectedly hospitalized, what they should say to your children, how to make hospital visits feel safe, and more.
Make a list of your key medical information, contacts, and what items you need in the hospital to prepare in advance for what your support system should do if you’re admitted unexpectedly.
Follow this short 5-step script to brief the people in your child’s life if your condition is having an impact on their schedule, schooling, and so on.
Follow this 5-step script to talk to your child about new or changing conditions, flare-ups, treatment changes, and more.
Use this guide to help your family members feel prepared to talk to dispatchers and EMTs if you have a medical emergency.
Bring this list of questions to your doctor to ask how your condition could impact your fertility, pregnancy, childbirth, medication use, postpartum care, and more.
Fill out this health family tree with medical information about your family to help explain your condition to your child. This is particularly helpful for explaining heritable conditions.
These wonderful books are geared toward children of all ages and can be very useful for explaining your condition to your child.
There is a vast body of research on how a parent’s chronic illness or disability impacts families. These are three of the key findings:
Research shows that the families of patients with a chronic illness or disability need education, training, and support— yet such services are rarely in place.
Parents are often worried about how to talk about their illness or disability with their children and how to help them adjust to it.
Having a parent with a chronic illness or disability doesn’t necessarily have an impact on children as compared to those with a healthy solo parent or two healthy parents.
Factors that help are a close emotional connection to both parents and open communication.
Goal: Assess ten studies that look at how a parent’s illness or disability affects their children.
Key finding: Many children of a parent with a chronic condition fare just as well as their peers as long if they have a close emotional connection to their parents.
Goal: Assess the emotional and practical impact early-onset ischemic heart disease has on families.
Key finding: Parents’ top concerns were communicating their diagnosis, fulfilling their parenting role, and their children’s physical, emotional, and social adjustment.
Key finding: When both mother and child have a chronic illness, mothers tend to be more overprotective; in other pairings, mothers showed more permissive attitudes.
Goal: Investigate whether adolescent children of parents with chronic illness show behavioural problems.
Key finding: The research is contradictory; better methodology is needed, including more diverse demographics and more interviews with family members.
If you are living with a chronic condition, you may know this scenario all too well: you patiently wait for months to see your doctor, and then once you get there, the appointment is just a few minutes long and mostly focused on medication and tests.
Even if your condition causes frequent flare-ups or hospitalizations, you most likely don’t have enough time to talk about how you and your family are coping.
That is certainly true for me — and it’s something I hear again and again from the parents I work with.
In a recent survey I conducted, even though half of the respondents were regularly hospitalized, more than 80% said neither their primary care doctors nor their specialists had ever asked how their condition affects their family.
This represents a significant gap in the care pathway.
The resources on this site are designed to help fill that gap — for parents and caregivers, as well as the clinicians, nurses, respiratory, physical, and occupational therapists, family psychologists, and other health professionals who support them.
If there’s a topic you’d like to see me cover that is not on the site, please feel free to send me a note through the contact section. I love hearing from patients, clinicians, and foundations about what support they need.
