Family support for the child with a congenital heart condition

PDF download is not available for Arabic and Urdu languages at this time. Please use the browser print function instead

Having a child with heart disease is a strain for the whole family. Various different health professionals can provide support in difficult times.

Key points

  • Social workers can offer individual, family or group counselling, patient and family education, information about and referral to community based services.
  • Psychologists are trained mental health professionals that can help individuals cope with problems that can be causing stress, anxiety or depression.
  • Child life specialists are trained in child and family development and can help children and patients understand the hospital environment.
  • Patient representatives help connect patients and families with hospital staff and services.
  • A bioethics consultant can help patients and parents who have ethical or moral concerns about their child's care.

Many feelings and stresses can come up when your child is in the hospital. Along with your child’s illness, you may have problems dealing with a complex hospital system. The family support team can help you to cope.

Social worker

Social workers are integral members of the health care team and offer a variety of supportive services including: individual, family, or group counselling, patient and family education, information regarding community resources, and referral to community based services.

Social workers are professionally trained to help children and families who are dealing with difficult situations. As a member of your child's health care team, the social worker understands the impact of the heart condition or disease affecting your child and family. They are also aware of the diverse backgrounds and unique needs of families who come to the hospital for cardiac care.

How can a social worker help you?

Social workers provide counselling and other services that you or your family may need when your child is coping with a heart condition. Some of the ways they can help include:

  • supporting you during periods of crisis
  • offering individual counselling for children and teens
  • counselling parents, couples, and families
  • providing support groups
  • linking you to community resources when you need financial help or home support
  • advocating for you in the hospital and in the community

When should you talk to a social worker?

You may be worried, or want to talk to someone, about:

  • understanding a diagnosis
  • your child's and family's adjustment to illness and treatment
  • feelings of loss of control
  • your own health and self-care issues
  • your child's problems at school or with other children that may arise as a result of the medical condition
  • periods of stress and how you can cope
  • feelings of grief and loss
  • parenting issues and concerns about your other children and their care
  • family conflict which affects your ability to cope
  • financial difficulties created by your child's illness or stay in hospital
  • concerns that you or your child may be at risk of emotional, physical, or sexual abuse
  • concerns about communication with the health care team
  • follow-up support for your child and family at home

Who do social workers see?

Social workers are available to all families, regardless of a given child's condition. They do not just see the families of children with very serious, life-threatening illness. Regardless of your child's underlying cardiac diagnosis, do not hesitate to ask for social work services. Helping to ease your anxieties and finding solutions to problems will make you better able to be supportive and positive for your child and the rest of the family.

What happens when you see a social worker?

Social workers are committed to providing strength-based, family-centred care. The social worker will want to understand the difficulties you face. She will do an assessment of your situation and explore your psychosocial needs. Together, you will identify the difficulties you are facing and develop a plan of care.

Social workers are available to see all family members if they also need support. The social worker may continue to provide counselling and support after your child is discharged.

How do you contact a social worker?

You can request this service yourself. A member of your cardiac health care team may also suggest putting you in touch with a social worker, depending on your situation. Speak with your child's nurse or doctor, or contact your hospital’s social work department directly.


What is a psychologist?

Some cardiology departments have a psychologist on staff who can provide support to children with cardiac conditions and their families. A clinical psychologist is a trained mental health professional with a PhD in psychology. Psychologists can help individuals cope with problems that are causing emotional distress. Through counselling, psychologists can help address and resolve these problems that can be causing stress, anxiety, or depression.

Child life specialist

Depending on the hospital, your child may meet a child life specialist. Child life specialists are non-medical members of the team; they do not diagnose or treat conditions. What they do is help children and parents understand the hospital environment and prepare for procedures and surgery. They have special training and experience in child and family development and the effects of illness and hospitalization.

The child life specialist role grew out of the recognition that the hospital experience can be very upsetting for children. Providing children with information about their condition and treatments, as well as ways of coping with stress, enables them to be more in control of their experience.

What does a child life specialist do?

Child life specialists specialize in a given medical area, so the one you will meet will be an expert in “matters of the heart.” During the meeting, the child life specialist will discuss your needs and your child's needs, answer any questions you may have, and explain any procedures. She will ask about any previous hospitalizations or hospital experiences your child may have had, and whether these were positive or negative, since that will influence his ability to cope with the current procedure.

Some child life specialists use puppets to speak to the kids and play the part of the patient. For example, the puppet may have a chest tube or a blood pressure cuff. They also use picture books with non-threatening images to show stages of a procedure and medical equipment. Their strategies take into account the different ways and speed at which different children learn.

How can a child life specialist help you?

Sometimes parents just need another explanation of their child's condition. Or, you may want to know about stress your child will feel after the procedure, how your child will cope going back to school, or how they should discuss the situation with their peers.

The child life specialist will tell you what to expect and help address concerns and ease anxieties. They will discuss coping strategies and pain management. In addition, they will share some suggestions about how to talk to your child about his condition and what items (like toys, teddy bears) you should bring to comfort your child during the hospital stay.

Later, the child life specialist may see your child as he is being prepared for catheterization or surgery, sometimes helping to calm him down if he is upset, or if he simply needs more support. She will use strategies like blowing bubbles, counting, listening to music, and deep breathing to help relax your child. She may also see your child after the procedure just to see how things went.

Child life specialists also serve as advocates for you. If you do not understand something, she will get you the information. Or if you have a special need or request, she will do her best to accommodate it. And because she will have spent time with your child prior to the procedure, she will be in a good position to help make sure that developmental needs are being met over the course of the treatment. This may involve having your child referred to other professionals (for example, a physiotherapist) if necessary.

In addition to all these activities, child life specialists also operate playrooms and organize activities such as movies and games to keep older children occupied during their hospital stay. The child life specialist may also plan special events like birthday parties.

Why is it worth meeting with a child life specialist?

A visit with a child life specialist is very valuable, even if you and your child have been through a procedure before. Your needs may have changed since then, and your child will likely have different coping and information needs as well. A child who is six, for example, will want to know more about his treatment than a child who is four. A teen may want fairly complex information.

You are also encouraged to bring any of your child's siblings to the meeting as well. This is the ideal opportunity to prepare them for their sibling's operation and help address any fears they may have. The ultimate goal of the child life specialist is to make the hospital experience as positive as possible for you and your child.


Interpreters are individuals who help non-English-speaking and hearing-impaired patients and families talk with health care professionals about their child's medical condition. Some hospitals have interpreters on staff. Their services can be arranged for ahead of time in case they are needed to attend hospital appointments.


Chaplains of different faiths offer spiritual and emotional care to patients and their families. They perform religious services at hospitals. Most hospitals offer chapels, meditation rooms, or prayer rooms.

Patient representative

What is a patient representative?

A patient representative, or patient rep, helps you and your child deal with questions or concerns you may have about the care your child is getting. This is the person you can turn to for information and help, especially when you do not know who in the hospital to talk to about a particular problem.

Patient reps help connect patients and families with hospital staff and services. They act as a bridge that brings people together to seek positive solutions. They can:

  • help you resolve issues at the hospital
  • help you find the information or resources you need
  • help families and staff communicate better with each other

The patient rep acts in the best interests of the patient. While your child is being cared for at the hospital, the patient rep is there to represent, or act on, your family's needs or concerns. They respond to all patients/families that request their assistance.

Why does it help to talk to a patient rep?

Illness and being at the hospital can be disruptive and stressful for families. It can be hard to seek help and ask questions.

Some people have medical care concerns they need to address while others may have communication issues with the health care team that are troubling them. Some patients and parents worry that they will break down and cry, or get very angry, when discussing issues that upset them. Most people do not want others to think they are being difficult. Families may worry as well that they will make things worse for their child or for themselves, if they express that they are concerned or dissatisfied.

Patient reps understand these fears. Their goal is to support and help you. Because they are not part of your child's medical team, they are in a good position to assess and respond to your concerns. The service is offered because responding to families' concerns is an important part of family-centred care.

What can the patient rep do for you?

If you want to talk to a patient rep, you can do so:

  • in your child's room
  • on the phone
  • in the patient rep's office

You can talk to the patient rep during business hours while your child is receiving care at the hospital.

After talking with you, the patient rep will recommend some actions that can be taken. For example, the patient rep can:

  • contact someone on your behalf
  • go with you to meet with the staff member to talk about your concerns
  • work out a plan to help you take your concerns directly to a staff member

How do you contact a patient rep?

You can ask a nurse to refer you to the patient rep service, or you can simply call the hospital switchboard and ask to speak to someone in the patient representative service.

Bioethics consultant

What is a bioethics consultant?

A bioethics consultant is a professional who has been educated and specially trained to identify and counsel people about ethical problems. These individuals can help patients and parents who have concerns about ethical or moral issues having to do with their child's care. Bioethics consultants also work with members of the medical team to resolve any issues with the family that may be interfering with delivery of care.

Bioethics consultants may have a background in philosophy, law, theology, or one of the various health professions, with additional special training in bioethics. They do not provide you with the “right answer” or tell you what to do, but may be able to help you with the process of thinking through difficult ethical decisions.

What are ethical decisions?

Sometimes people are not sure what the right thing to do is. They may be faced with a complicated problem or situation with which they have no experience. They may be faced with a problem with conflicting or unclear values, or a situation where there is uncertainty about how to proceed.

Some examples include:

  • "I want to do what is best for my baby, but whatever I choose may cause them harm. How can I decide?"
  • "Should we tell our child how serious their illness is?"
  • "My child is growing up and sometimes seems old enough to make their own decisions. Should I let them decide about their medical treatment?"
  • "Should we withdraw life support from our child?"

How will the bioethics consultant help?

The bioethics consultant will help you think about the goals and hopes you have for your child, in terms of their quality of life, and get you to look at the decision you need to make in the context of your own values. Considering all the details and all the options, as well as having an opportunity to express your emotions, will help in the decision-making process.

Although open discussion with everyone involved is encouraged, confidential consultations are available.

How would you get in touch with a bioethics consultant?

If you are struggling with a difficult decision and need some support, ask the nurse to refer you to your hospital's bioethics consultation service. A bioethics consultant will do their best to meet your needs, whether that means just one meeting to discuss a particular issue, or several meetings.

Last updated: December 4th 2009