Many feelings and stresses can come up when your premature baby is in the Neonatal Intensive Care Unit (NICU). Along with your baby’s prematurity, you may have trouble dealing with a complex hospital system. The family support team can help you 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 baby’s health care team, the social worker understands the impact of prematurity on your baby and family. The NICU social workers are aware of the diverse backgrounds and unique needs of families who come to the hospital for neonatal care.
How can a social worker help you?
Social workers provide counselling and other services that you or your family may need when your baby is coping with prematurity. Some of the ways they can help include:
- supporting you during periods of crisis
- 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 baby's and family's adjustment to prematurity and its treatment
- feelings of loss of control
- your own health and self-care issues
- 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 baby’s illness or stay in the NICU
- concerns about communication with the health care team
- follow-up support for your baby and family at home
Who do social workers see?
Social workers are available to all families, regardless of a given premature baby’s condition. They do not just see the families of babies with very serious, life-threatening illness. Regardless of the degree of your baby’s prematurity, 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 baby 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. they 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 premature baby is discharged from the NICU or hospital.
How do you contact a social worker?
You can request this service yourself. A member of your premature baby’s health care team may also suggest putting you in touch with a social worker, depending on your situation. Speak with your baby’s nurse or doctor, or contact your hospital’s social work department directly.
Interpreter
Interpreters are people who help non-English speaking families talk with health care professionals about their baby’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.
Chaplain
Members of the chaplaincy, or spiritual care department, offer spiritual, pastoral, and sacramental care to patients, families, and staff. In the critical circumstances of medical care for a newborn baby, issues of suffering, life, and death require a search for understanding that honours the physical but also, the emotional and spiritual. Most hospitals offer chapels, meditation rooms, or prayer rooms.
Patient representative
What is a patient representative?
A patient representative, or patient rep, helps you deal with questions or concerns you may have about the care your baby is getting. This is a person you can turn to for information and help, especially when you don't 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 in the NICU or in any part of 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 baby and family. While your baby is being cared for in the NICU, the patient rep is available to represent or respond to your family's needs or concerns.
Why does it help to talk to a patient rep?
Having a premature baby 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 baby 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 baby’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 about a specific concern, you can do so:
- in your baby’s room
- on the phone
- in the patient rep's office
You can talk to the patient rep during business hours while your baby is receiving care in the NICU, or after your baby has been discharged.
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 issues associated with their health and health care. These people can help parents who have concerns about ethical or moral issues having to do with their premature baby’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 of the right thing to do, especially if they are faced with a complicated problem or situation with which they have no experience. They may face a problem with conflicting or unclear values or a situation where there is little certainty about how to proceed.
Some examples include:
- "I want to do what is best for my baby, but whatever I choose may cause her harm. How can I decide?"
- "Should we tell our family how serious our baby’s illness is?"
- "Should we withdraw life support from our premature baby?"
How will the bioethics consultant help?
The bioethics consultant will help you think about the goals and hopes you have for your premature baby, in terms of her 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're 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 her best to meet your needs, whether that means just one meeting to discuss a particular issue, or several meetings.