Cardiomyopathy Program | Coping & Support

When your child has cardiomyopathy, you are faced with many concerns and questions. Not only are you focused on meeting all of your child's medical needs, but you are also confronting a significant emotional and psychological challenge that can affect every member of your family.

In addition to the clinical information offered on this page, Boston Children's has several other resources designed to give your family comfort, support and guidance:

• Boston Children's Medical Coping Clinic helps kids who are being treated on an outpatient basis at the hospital — as well as their families — understand and cope with their feelings about:
  • being sick
  • facing uncomfortable procedures
  • handling pain
  • taking medication
  • preparing for surgery
  • changes in friendships and family relationships
  • managing school while dealing with an illness
  • grief and loss

• The Cardiac Experience Journal was designed by Boston Children's psychiatrist-in-chief David DeMaso, MD, and members of his team. This online collection features thoughts, reflections, and advice from kids and caregivers about going through cardiac disease, heart transplants, and many other medical experiences.

• Boston Children's Psychiatry Consultation Service is comprised of expert and compassionate pediatric psychologists, psychiatrists, social workers, and other mental health professionals who understand the unique circumstances of hospitalized children and their families. The team provides several services, including:
  • short-term therapy for children admitted to one of our inpatient units
  • parent and sibling consultations
  • teaching healthy coping skills for the whole family
  • educating members of the medical treatment team about the relationship between physical illness and psychological distress

• Boston Children's Department of Psychiatry offers a free booklet, “Helping Your Child with Medical Experiences: A Practical Parent Guide." Topics in the booklet include:
  • talking to your child about his or her condition
  • preparing for surgery and hospitalization
  • supporting siblings
  • taking care of yourself during your child's illness
  • adjusting to life after treatment

• Boston Children's Hale Family Center for Families is dedicated to helping families locate the information and resources they need to better understand their child's particular condition and take part in their care. It is also a comfortable place for patients and families to learn more about hospital resources, use computers to email and search the Internet, and borrow from the lending library.

• The Boston Children's Department of Spiritual Care (chaplaincy) is a source of spiritual support for parents and family members. Chaplains at Boston Children’s represent a variety of faiths, including Islam, Judaism, Protestantism, and Roman Catholicism, and they are available 24 hours a day. Sensitive consideration is given to your family’s religious tradition and primary language.

• For children and families affected by life-threatening illness, our Pediatric Advanced Care Team (PACT) is available to provide supportive treatments intended to optimize the quality of life and promote healing and comfort. In addition, PACT can provide emotional support and help arrange end-of-life care when necessary.

• Boston Children's Integrative Therapies Team provides a number of services for hospitalized children, their families, and their caregivers, including:
  • massage therapy
  • acupuncture
  • yoga
  • therapeutic touch

• Boston Children's Global Services is a dedicated resource for patients and families from countries outside the United States. The center can provide assistance with everything from reviewing medical records to setting up appointments and locating lodging. Contact the center by phone at 01-617-355-5209 or via e-mail at international.center@childrens.harvard.edu.

• Our interpreters speak more than 60 languages and are available 24 hours a day, seven days a week (including holidays). The center also provides translation services over the phone and via videoconference software.

• Free, quality tutoring services are available for all eligible patients through our partnership with LearnWell, an organization that contracts with local school systems.

• For a full list of family resources, check out the patient resources page on our website.