Communication with Families

San

Sandra Moore-Pope ACSW, LCSWCamron Hampshire LMSW

Martha Dimant MSWDonielle Griffith MSW Intern

Grady Hospital Special Care NurserySocial Work Department

is the process of relaying and exchanging information in such a way

that the family understands what is happening with

their baby as well as they possibly can.

Effective communication

Why is effective communication important?

It lays the foundation for including the family in decision-making and is especially important as a precursor to conversations involving difficult decisions, for example, allowing a natural death.

It allays stress in parents - any information, however difficult to hear, is better than not knowing.

It ultimately builds trust with the care team and promotes better health outcomes.

Why is it Soooo Difficult to Communicate Effectively?

Often, what I thought I meant to say is not what you thought you heard come out of my mouth…and on top of that, when working with families

whose babies are in the NICU, we face a number of other barriers

to effective communication.

Barriers

Having a baby in the NICU creates tremendous anxiety for the family, particularly in the first three days following admission. Classically, our capacity to process information when under stress/pain is dramatically limited.

Other possible stressors: * differences in language and/or culture* fear/concern/guilt/denial/anger* unresolved mental health/substance abuse

issues * relationship challenges/family issues* feelings of being totally out of control and

helpless to care for their own child* educational and/or financial challenges* the stress of unexpected delivery or chronic

health issues

Strategies for Providers

What can you do? If at all possible, include other members of the care

team, especially the social worker, when scheduling a family meeting.

Ask them who they would like to have with them at the family meeting. Their spiritual leader can come to lend support. (There is a hospital chaplain available--call the chaplain only if the family requests it.)

Realize that families are in pain, are confused, and do not know what to expect. Defense mechanisms may be in play--denial is a form of emotional protection and anger covers up fear and hurt.

Meet in a quiet/private area--not at the bedside--when giving difficult information. Answer some questions at the bedside, but if the information is anything more than routine, it is better to find a private, quiet space.

What else can you do?

Always use the baby’s name and correct gender.

Show caring and compassion to the family in talking about the baby, even if only in your looks, actions, or in your touch. This is critical in building trust and will help them believe what you are telling them.

Build a relationship by talking about the special, endearing qualities you see in their baby or the love you see them showing to their baby.

Answer the parent’s questions with compassion and without judgment. Be honest, but leave a little hope if possible.

Validate their cares and concerns. Show with your body language that you care about them and about their baby.

…and what else can you do?

Try to gauge what the family already has been told, but try to avoid the “pop quiz.” Check in with the parents by asking them to “tell me what you have heard so far,” BUT remember that this can be very intimidating if it is done at the very beginning of the conversation, so try to establish a caring, validating relationship with them first.

Give parents an opportunity to ask questions, but if they don’t ask specific questions, it is probably because they don’t know what they should ask…so you could go ahead and answer the question that they probably should have asked.

Some genuine, positive feedback is helpful to encourage them to feel comfortable. Remember, a little kindness goes a long way!

…and finally…. Stress the points that you consider important, but

also know that people may focus on the one thing that they can understand…and it may not be the most significant to you. This will give you an opportunity to gauge what they have heard and you can reiterate what you want them to know.

Make an effort to coordinate information with other members of the team, so that the family does not receive what seems like conflicting information to them. Avoid saying that the baby is “fine” or “the same.” (It reinforces their denial.)

You can reflect sadness or say “I really wish this hadn’t happened” if that seems appropriate to you. Fake cheerfulness usually distances us from the family and makes it difficult for them to express sadness or fear.

Communication is difficult… The information is complicated and

unfamiliar to families. There are varied psychosocial issues

within the families, often difficult to assess initially.

Providers don’t want to hurt families by giving bad news.

Providers are taught by upbringing or education not to show emotion.

Time constraints/agendas of providers conflict with family information needs.

Maternal Appraisal of Information Given Around the Time of Preterm

DeliveryJournal of Reproductive & Infant Psychology, Aug 99

76 preterm infants, 1190g (med bw), 28 wk (med gest), ½ w/cerebral lesions predictive of CP.

Semi structured interviews at 12-24 wks after birth examined mothers recall and their understanding of information given at delivery.

There was, of course, a thorough explanation by neonatologist.

Recall/understanding was limited & predictions or expectations for the future did not reflect diagnosis.

Parents responded: “I felt like I hadn’t had a baby. I just didn’t think. I

didn’t realize that she was downstairs fighting. I avoided thinking about what had happened.”

“I had looked at magazines about birth and babies, but you don’t look at pictures of sick or premature babies. I wasn’t prepared at all”

“ They always gave you information, but I can’t recall the details. I didn’t listen a lot of the time.”

“I didn’t care about explanations. They saved her. I’m satisfied”

“I just knew that when he was term he’d be all right. I just kept that in my mind.”

Questions… What are some of the communication

strategies you have seen that work well? How did you know they “worked”?

What are some that have not worked well? How did you know they didn’t work? What would you have done differently?

More Questions… What kinds of concerns/anxieties do you

have when talking with parents/families?

How important do you think family conferences are?

Have you had frustrations with parents regarding communication issues?

Have you had parents angry at you because of what you said or didn’t say?

Some Commonly-Used Terms That

Parents Often Don’t Understand

PO feeds Child spacing/family planning Blood cultures negative Developmental delay/ Milestones Hemorrhage Resolving Intubated/extubated High bili Primary care Others???

Be there…

The friend who holds your hand and says the wrong thing

is made of dearer stuff than the one who stays away.

Dorothy Kingsolver, writer