Each year in the United States (US), roughly 1% of infants are born with congenital heart disease (CHD).1 Additionally, research from the Centers for Disease Control and Prevention showed that nearly 1 million US children aged 0 to 17 years (1.3% of the pediatric population) had a current heart condition in 2016, based on responses to parent surveys. Compared with healthy children, those with a heart condition had 1 or more special health care needs, such as prescription medications, speech or occupational therapy, or mental or behavioral health counseling.2
Providing optimal medical care for these patients requires close collaboration with their parents, and having discussions regarding the diagnosis, prognosis, and treatment of a child with cardiovascular disease can be challenging for clinicians. Among the potential communication barriers that may affect these conversations, findings have demonstrated that approximately one-third of US adults have low health literacy, and more than one-third of pediatric medical residents and faculty have received no training in health literacy.3
Despite the important influence of parental knowledge on the quality of care and quality of life of children with CHD, researchers have observed significant gaps in parental knowledge about CHD in this population.4 One study found that only 16.4% of parents of a child with CHD received education about how to care for the child at home following discharge from the hospital.5
For recommendations regarding effective strategies in educating parents of children with complex cardiovascular diagnoses such as CHD, we interviewed the following experts:
- Madeleine Townsend, MD, pediatric cardiologist at Cleveland Clinic Children’s Hospital in Cleveland, Ohio
- David Brown, MD, cardiologist at Boston Children’s Hospital and professor of medicine at Harvard Medical School in Boston, Massachusetts
- Daphne T. Hsu, MD, chief of cardiology at Children’s Hospital at Montefiore and professor of pediatric cardiology at Albert Einstein College of Medicine in Bronx, New York
- Amanda J. Shillingford, MD, FACC, physician at the Cardiac Center at Children’s Hospital of Philadelphia and medical director of the Fetal Heart Program Annex at CHOP’s Bryn Mawr Specialty Care Center in Pennsylvania
When speaking with the family of children with complex diagnoses, how do you taper your information dissemination as it relates to diagnosis, treatment, and prognosis without overwhelming them? Is it preferable to share all the information at once or incrementally over multiple visits?
Dr Townsend: Explaining new and life-changing diagnoses to families is inevitably a very challenging conversation to open. The complexity of explaining new terminology, various treatment options, and particularly the range of outcomes to shocked parents who are grieving their “healthy” child can be very overwhelming. Medical providers understandably feel they are trying to convey too much information at once, while also battling the necessity of ensuring families are able to make informed decisions on next steps in care.
Open and clear communication in these settings often involves opening the conversation with information on the diagnosis and the next steps that need to be considered, with a plan to allow this information to settle and then come back for another meeting to evaluate parental understanding and continue to expand on the conversation with additional details. The timeline of follow-up meetings is often dependent on the need to make quick decisions on next steps in care—for example, with prenatal diagnoses where termination may be an option.
Providers can help families in these situations by acknowledging emotions, clearly communicating specific information with the help of nonverbal teaching tools such as diagrams or models, providing well-vetted online resources such as websites and parental support group information for further education at home, and being aware of how the provider is presenting the information.6
Parental perception of provider empathy and compassion has been found to be inversely linked with the likelihood of seeking a second opinion.7 Allowing adequate time for detailed conversation and remembering the importance of nonverbal communication, such as body posture and position, can ensure that families feel heard and valued.
Using a multidisciplinary team approach can also be helpful, with the incorporation of additional supports such as palliative care or psychology, as these providers may have different ways of communicating with families that can help clarify the information, as well as expose any misunderstandings that families do not bring to the pediatric cardiologist’s attention.
The “teach back” technique can be helpful, with open questions to families such as “What have you heard me say?” and “Tell me how you will explain this to your other family members.” Making sure families know there will be additional opportunities to speak again and reminding them to write down questions before the next meeting can also help to ease parental anxiety about the need to understand everything immediately.
Dr Brown: I find the approach that works best for families of children with complex diagnoses is to consider the first discussion the beginning of a conversation that will continue and evolve over time. That first conversation is important, as you are creating a framework upon which you and the family will build understanding over time.
It is easy to overload families with too much information and detail in that first meeting, particularly for those hearing about complex diagnoses for the first time—sometimes all they remember from that conversation is that their child has a serious problem. I usually try to have simple goals for that first conversation—what is the diagnosis, what are the treatments that might be required, and what is the expected longer-term outcome and quality of life for their child.
Just like any conversation, families will give cues—both verbal and nonverbal—about how they are processing the discussion, and those cues can help you determine if you are giving them too much information, not enough, or about right. Leaving time and space for comments and questions is really important, and if they are not asking clarifying questions, one can ask them questions to probe understanding or find out which questions or concerns they might have that you haven’t addressed.
With the next conversation, you can fill out the framework that began with the first conversation. I will often start by asking what they understand about their child’s diagnosis, as this can help you understand where to pick up the conversation. I usually plan on discussing these same things again, regardless—diagnosis, treatments, outcomes—with perhaps more detail about the treatment options and anticipated outcomes, again taking cues from the family about where they are in their understanding of these issues.
Dr Hsu: I view the first conversation as a way to set the stage for the ongoing conversations that will take place while I am caring for the child. I start by giving a “big picture” of the problem, focusing on what the clinical issues are that are impacting the child and what treatments are available to help improve them. Discussion of treatments includes outlining the risks and benefits, and most importantly, which particular treatment should make the child better and why. The idea of getting better or worse is the essence of prognosis, so that is a natural part of the conversation.
One of the rewards of our field is that the cardiac team establishes a relationship with a patient and family that may be lifelong, so it is important to let the patient and family know that the first conversation is one of many and at each time they should be comfortable asking questions and getting answers.
Dr Shillingford: This can definitely be a challenge, as there are multiple factors that should be considered when counseling parents about a new diagnosis of complex CHD. As a fetal and outpatient pediatric cardiologist, I deliver information to parents under variable circumstances. Parents present with a broad range of educational and mental health foundations, religious beliefs, and psychosocial supports, all of which impact how they will receive and process the information.
There is emerging research revealing high rates of mental health disturbances – including post-traumatic stress, anxiety, and depression—in parents of children with complex CHD, which has lasting effects on coping and parenting.8 However, there are also multiple studies engaging parent feedback specifically related to what is helpful and what is not helpful during counseling. What I have learned from these studies is that parents want a balanced delivery—they request honesty and realism, but they also want to have hope for their child’s future.
Fetal cardiology and prenatal diagnosis of CHD are my particular areas of interest. Depending on the timing of diagnosis during the pregnancy, parents may be considering their options regarding continuation of the pregnancy and delivery location, which may require geographical relocation. For me personally, I adjust my counseling content based on the severity of the disease, what I have learned about the parents from questionnaires or records available in the EMR and real time feedback based on my interaction with them.
I begin the session by asking the family what they have been told about the fetal cardiology appointment or the need for a fetal echo. I do believe that it is important to be honest and provide realistic expectations to families, especially if parents are making decisions about pregnancy continuation. If the pregnancy is beyond termination limits, and definitely if the parent is significantly emotionally distressed, I will abbreviate the counseling sessions and utilize multiple visits.
Sometimes, parents will be upfront and state, “I can’t hear all of this now, just tell me if there is a treatment,” or, “I have researched this diagnosis and here is the information I know. Please tell me CHOP’s experience, services, and outcomes.” For the CHOP Fetal Heart Program, we have incredible psychosocial supports for families, with nursing, social work, and psychology as part of the “counseling team.”
A few principles I use for counseling the more complex forms of CHD when I walk in the room:
- Acknowledge that a heart defect was identified and that a treatment strategy is available.
- Describe “normal” cardiac physiology – many people really have no idea about CHD, and it is difficult to explain why certain interventions are needed without understanding why the child’s heart is different.
- Discuss a plan for pregnancy monitoring – in most CHD cases, the baby can still have a “normal” delivery, and most newborns appear quite normal early after birth.
- Review the general perinatal plan for the postnatal assessment, monitoring, and planning, and reassure families that in most cases, they will be able to hold their baby after birth and before surgery, will likely be able to feed a bit, and that breastfeeding will be an option.
- Discuss the general surgical plan and postoperative care, as well as the need for life long follow up.
- I tend not to get into details regarding the specific [numerical] risk of morbidity and mortality for each procedure, but rather emphasize that pediatric cardiac centers are developed so that the specialized providers are all familiar with their child’s cardiac condition and will do everything possible to reduce these risks.
- I include a discussion about potential risks balanced with the reality that the vast majority of children who have undergone newborn heart surgery can progress through “normal” childhood and adult activities.
- I invite questions throughout the counseling session, and I emphasize the fact that they have received a lot of information that may be very difficult to process and that they will have the opportunity to hear the information again.
- I always provide contact information for me or my team to be available for follow-up counseling after the appointment.
- I ask parents—sometimes only mothers—about their supports. Some families will look to peer supports or internet resources. I do try to guide them to educational content on reputable websites, and I will provide information for parent CHD groups which some parents find helpful—although with the caveat that it is important to understand that not every internet CHD story can be extrapolated to their case.
- It is also important to alleviate parental guilt by simply stating, “We do not know what causes CHD. This is not your fault. We are here to support you through this process.”
In the outpatient world, I still follow many of the principles above. In this situation, the children may be older or the severity of CHD may be less. In this scenario, parents may not be expecting to find out their child has a cardiac problem requiring surgery or medication. I will still balance having realistic expectations. However, I may spread out the discussions over several visits. I often try to call families a few days after such an office visit in order to check in and give them an opportunity to ask questions. When applicable, I contact the primary physician to update them on a new diagnosis.
What resources do you use in educating families with low health literacy, and how do you gauge their level of comfort or understanding? What are some resources or strategies you would recommend for your peers who work in settings with high rates of low health literacy?
Dr Townsend: Lower health literacy has been linked to decreased understanding by families of their child’s medical diagnosis.3 Identifying families with lower health literacy is an important first step when meeting new families, as extra care should be taken when communicating information in order to improve family understanding, which can then lead to increased adherence and improved outcomes.9
Utilizing diagrams and models and other nonwritten communication tools can be a useful strategy to improve understanding of a diagnosis and proposed treatment options. It is also important to ensure information is written at the appropriate literacy level and in the family’s preferred language, which can mean reaching out nationally to other pediatric cardiology providers who may have access to written information in different languages or utilizing a translator service within the hospital system or online.
The same techniques discussed above are helpful to gauge understanding, especially the teach back system, as well as ensuring that follow-up meetings are scheduled to evaluate initial understanding and address any questions or concerns that arise.
Dr Brown: When it comes to complex medical diagnoses, many families will find it challenging to understand, especially the first time they hear about them. For those with low health literacy, images or physical models are often very helpful when used appropriately. For example, with a particular heart defect, you can use a graphic of a normal heart to point out normal structures, and then modify the drawing to show where the problem is with their child’s heart.
Three-dimensional heart models are also very helpful in that families can hold them and turn them around in space to get a better understanding of the problem. There are also excellent online resources available now, including 3-D reconstructions from imaging studies—for example, from MRI or CT—of children with similar diagnoses that can help families arrive at a better understanding of the problem.
Dr Hsu: I assume that virtually all patients and families have a low health literacy when it comes to heart diseases in children, as they are extremely rare and families are unlikely to have had prior personal experiences with the issues that arise in pediatric heart diseases. For imparting knowledge about the child’s specific heart problem, it is difficult to refer patients to web- or paper-based materials, as they are often too general to be applicable and can confuse or cause increased anxiety, so I prefer that there is a give and take between the cardiac team and the family about specific decisions.
That said, the impact of a serious illness on the child and family cannot be underestimated, and it is important to talk about ways families cope with this type of stress. I let patients and families know that there are many excellent organizations where they can hear other families’ experiences and get general information about diseases and treatment, and I make sure they always feel free to bring that knowledge back to the team so that any questions can be answered. In the field of heart transplant, matching a patient and family with a family that has been through the process can be invaluable because it makes them feel less alone.
The importance of having a good understanding of the patient and family’s cultures, support system, social supports, and challenges cannot be overstated. The impact of a serious illness on all aspects of a family’s life has the potential to impact the child’s disease, and identifying how best to help a family and patient be the best partners in a patient’s care is essential. For patients who are not native English speakers, the use of translators is crucial to making sure that the finer details of care are addressed and that patients can ask more complex questions comfortably.
Asking the patient to tell you in their own words what they understood about the problem and treatments that were discussed at the visit is a great way to gauge their understanding of what is planned and why, and this can let the team know if there are gaps that can be addressed.
Dr Shillingford: I provide some sort of written documentation of the diagnosis, which includes a picture. Although not a perfect strategy, I begin any counseling discussion by asking parents if they have a medical background and what they understand about the heart already—this is more relevant for fetal CHD, which is often referred to us from another provider who diagnosed or suspects a cardiac defect. I write down the medical diagnosis as well as the more basic description—for example, “Ventricular Septal Defect = ‘Hole’ between the bottom chambers of the heart.”
For CHD specifically, there are numerous online resources which can be accessed. I use the American Heart Association and the CDC descriptions of CHD, and there are also Spanish versions of these resources. Children’s Heart Foundation is an advocacy and fundraising group with excellent CHD resources, including a book called It’s My Heart, which covers many CHD topics in plain language since it was vetted by parents. Mended Little Hearts is another organization geared towards parental support and advocacy, and they also have online resources.
How can a physician best gauge a child’s potential readiness to be involved in discussions regarding management of their illness?
Dr Townsend: With the growing population of children with CHD surviving and thriving into adulthood, there is an increasing need to support successful transition of care from the pediatric to adult setting. Multiple tools exist to gauge an adolescent patient’s readiness for transition, including the Transition Readiness Assessment Questionnaire, the MyHeart scale, the General Self-Efficacy scale, and the Children’s Uncertainty in Illness Scale.10
Starting transition discussions early, at the onset of adolescence, with age-appropriate education on the patient’s diagnosis and long-term care needs, as well as helping guide families toward giving increasing autonomy to their children, can help to provide gradual readiness for transition of care as well as increased involvement in medical decision making.
Dr Brown: Some basics are helpful and important in assessing readiness to be involved, such as the age of the child and whether there are any barriers to communication such as spoken language or developmental delay. Families can often help you understand if a child has certain fears or concerns that should be approached carefully. The older the child, the more agency and voice they should have in these discussions.
Just as adults do in these conversations, children will give verbal and nonverbal cues about what they are understanding and whether they would like to be involved in illness management discussions. An invitation to be part of the conversation is often the best approach, and can be as simple as asking, “What questions do you have about this?” or “What do you think about what we have been talking about?”
Dr Hsu: Speaking directly to the child during the visit is an important way to make them feel included. As soon as the child can answer questions about level of activity, play, and interests at school, this is a great way to establish a relationship with the child. Letting the child ask questions is a great way to gauge understanding and address the important issues. I also try to speak directly to the child at the end of the visit to offer reassurance to the child about their heart disease, as children may not understand all the nuances of the conversations that take place during the visit.
Dr Shillingford: This is also a challenge because parents have different ways that they involve their child in decision making. Generally, pre-adolescence is the time when I start to speak more directly to the child about the findings from their visit and make sure to allow the child time to ask questions. I ask them if they are interested in looking at an echocardiogram picture for example, but if the child does not ask many questions and the parent is not actively including them in the discussion, then I will defer detailed discussions with the child until the late teens years when I talk about the future need to transition to an adult provider. CHOP has a Transition to Adulthood program which we can refer to, but the “transition” process may take several years before all of the patient’s care is fully with an adult provider.
It can be physically and emotionally challenging for cardiologists working with complex cases, especially when there are language and health literacy barriers. How do you balance your work and mental health to prevent burnout and compassion fatigue?
Dr Townsend: Caring for children with CHD and their families can be challenging, particularly for patients who spend extended periods of time in the hospital. We live in in the day-to-day ups and downs of complex medical care with patients and their families, and we experience heartbreak when things go poorly—and jubilation when kids get better and can go home.
It is important to purposefully detach from the work environment, spending time away with friends and family as well as focusing on one’s own health with regular exercise and sleep. Often those times away are enough of a mental break to allow clinicians to return to the hospital energized. It is truly the personal connections we make with our patients daily that provide joy and satisfaction that the hard work we do is worthwhile, and if the opportunity arises to see them outside the hospital—for example, at a heart camp—that can help confirm the benefit of the time and care we put into helping children achieve their best lives.
Dr Brown: Often this type of communication is not done solo but as part of a team, which can be incredibly helpful. Taking the time to reflect with others on challenging cases or difficult conversations, and simply sharing that experience with others, is a very powerful way to lessen the mental and emotional burden. Most physicians are now paying more attention to self-care and making sure there is time to do things that bring relaxation and joy outside of work and allow relationships to be nurtured that can keep fatigue and burnout at bay.
Dr Hsu: Being able to help families and patients at a critical time in their lives is a great privilege and carries with it great rewards because of the appreciation that comes along with the work. Having a family light up when you enter a room because you are a familiar face and they know that you are doing everything you can to help is an experience that is unlike any other. We often speak of purpose in life, and purpose is something caring for children with heart disease has in large quantities.
Personally, I love the fact that I get to be a part of so many different lives, and that part of my job is learning about different cultures, social structures, hobbies, and the hopes and dreams of my patients. Sad things happen in what we do, and in those times, I try to remember what one of my teachers used to say: “We didn’t give them the disease, we are just trying to help.” Working with the patients and families also makes me have a greater appreciation for the good things I have in my life.
Dr Shillingford: I wish I had an answer for this question. I currently have teenagers at home, and I have missed many games and school events because I am with a patient or parent who requires more attention. It is a constant struggle to balance these demands. I have at times tried to set boundaries or limit patient loads in order to “refuel,” but there is some degree of guilt which comes with that as well. I have wonderful colleagues who I love working with, however I also have activities and friends who have no affiliation with my work which allows me to “escape” when I leave work.
- Centers for Disease Control and Prevention. Data and statistics on congenital heart defects. Updated January 24, 2022. Accessed July 2, 2023.
- Chen MY, Riehle-Colarusso T, Yeung LF, Smith C; EdS; Farr SL. Children with heart conditions and their special health care needs – United States, 2016. MMWR Morb Mortal Wkly Rep. Published online September 28, 2018. doi:10.15585/mmwr.mm6738a1
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- Martinato M, Virgis S, Cerantola E, et al. Parents’ knowledge about their children’s congenital heart disease: an observational study. Eur J Public Health. Published online October 25, 2022. doi:10.1093/eurpub/ckac131.457
- Lee BR, Koo HY. Needs for post-hospital education among parents of infants and toddlers with congenital heart disease. Child Health Nurs Res. Published online January 31, 2020. doi:10.4094/chnr.2020.26.1.107
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- Hilton-Kamm D, Sklansky M, Chang RK. How not to tell parents about their child’s new diagnosis of congenital heart disease: an internet survey of 841 parents. Pediatr Cardiol. Published online August 8, 2013. doi:10.1007/s00246-013-0765-6
- Kolaitis GA, Meentken MG, Utens EMWJ. Mental health problems in parents of children with congenital heart disease. Front Pediatr. Published online May 8, 2017. doi:10.3389/fped.2017.00102
- Murugesu L, Heijmans M, Rademakers J, Fransen MP. Challenges and solutions in communication with patients with low health literacy: perspectives of healthcare providers. PLoS One. Published online May 4, 2022. doi:10.1371/journal.pone.0267782
- Stewart KT, Chahal N, Kovacs AH, et al. Readiness for transition to adult health care for young adolescents with congenital heart disease. Pediatr Cardiol. Published online February 10, 2017. doi:10.1007/s00246-017-1580-2