Good communication and support helps parents of sick newborns cope in the NICU

July 13, 2015
When a sick baby is admitted to the BC Women's Newborn Intensive Care Unit (NICU), the hospital often becomes a second home for the worried parents.

But it's not where couples expect to spend the days and weeks after their baby is born, explains NICU social worker Pascale de Kerckhove. Many feel a sense of grief and loss because they expected to enjoy a full-term pregnancy and take home a healthy baby. Instead, they are faced with the challenges of supporting a sick newborn in a high-tech environment that she describes as a "foreign land with a foreign language."

Family-Centred Care

It takes a team of highly trained people to care for babies in the NICU. In keeping with the BC Women's  philosophy of providing family-centred care, the baby's parents are an important part of the team. The social worker is often the team member who provides immediate practical help, as well as emotional support and counselling for parents and families.  She's a key member in helping them to navigate the foreign landscape of the NICU.

Focusing on practical needs first

The first step is meeting the family's immediate practical needs. When a baby is admitted, parents often need to make arrangements that will enable one or both of them to spend time in the NICU. This may include sourcing a place to stay close to the hospital, arranging care for other children, or making provisions for someone to look after other family responsibilities. Once the initial practical solutions are in place and some of the immediate stress is relieved, the need shifts to helping the family problem-solve with other situations that may come up, including plans for the baby's discharge.

It's a big job. The NICU has up to 60 babies at one time, and 70 per cent of families come from outside the Lower Mainland, which makes the practical help and advice particularly important. 

Babies can stay in the unit for days, weeks or months. In rare cases, a parent may need to be at the baby's side for more than a year.

Helping parents cope

De Kerckhove explains that every family has different coping skills and support systems.

"We look at each family as a unique entity - how are they coping and what are we going to do to help them have the most gentle hospitalization, knowing that ultimately there is nothing easy about having a baby in the NICU."

The focus is what parents can do, rather than what they can't. For example, although it may not be possible for mom to put her baby to the breast, she learns that she can participate in her baby's care by other means, such as pumping breast milk, touching and cuddling. Parents are encouraged to be present at the care team's daily rounds, where the baby's treatment and progress are discussed. The emphasis is on helping them to understand that despite their baby's unique situation, their role is important and their baby needs them.

Some families also find support from other services within the hospital, such as the Reproductive Mental Health or the Spiritual Care programs.

As a member of the NICU team who does not provide direct care for the baby, the social worker often acts as a liaison or translator.  Along with their doctors and primary nurse they help to ensure that parents understand what is happening, and encourage them to speak up if they have questions, concerns or even intuitive feelings about the baby's condition.

Empowering family-centred care with communications

De Kerckhove explains that regular communication with parents is the key to family-centred care. This can range from a formal case conference for discharge planning or discussion of the baby's treatment, to providing easy-to-read resources to help families understand the baby's medical condition. Informally, a "how are you doing today?" check in with parents at the baby's bedside also goes a long way to encourage them to ask questions or voice concerns to doctors. Parents are also encouraged to be present when the care team has daily rounds to discuss the baby's progress and treatment.

Research shows that parents who feel well-informed are better able to cope with any special skills they need to continue caring for their baby.

"When you feel empowered, your confidence goes up, when your confidence goes up, your skills go up. It all goes hand-in-hand," she says.

Although their focus may be firmly on the baby's needs, parents also need to care for themselves. They are encouraged to come to terms with "the new normal" by developing a routine for their day at the hospital. De Kerckhove emphasizes the benefits of getting out for a daily walk, taking tea or coffee breaks from the NICU environment, and eating well.

NICU families also draw on each other for support, sharing stories and experiences while they are pumping milk or heating up food in the lounge. In some cases, long term friendships are formed.

Finding outside help

De Kerckhove's contact list contains many sources of help, including charities and community groups, to help families while their babies are in the NICU or getting ready for discharge to their home communities. The BC Women’s Family Support Fund, made possible by donor support to BC Women's Foundation, is one of the resources available to address some of the immediate needs of NICU families.

However, for families of babies who need a long stay in the NICU, there can be limits to the funding available. In some cases, the social worker becomes a "detective" to find additional community resources.

 

Helping a friend or loved one caring for a NICU baby

Practical assistance and support from family and friends can make a huge difference for parents who have a sick baby in the NICU. If you know someone in this situation, ask them what might be helpful. Some ideas include:
  • Cooking meals for the family freezer
  • Offering to help with driving other children to school or social activities
  • Driving mom to the NICU if her partner has to work (New moms may feel overwhelmed with driving alone soon after giving birth.)
  • Acting as the parents' liaison to provide email, telephone or online updates on the baby's progress to other family members or friends
  • Taking one or both parents out for a special break (This can range from seeing a sports game to getting a haircut or facial.)
Resources

Hope Starts Here

Read more about the BC Women's Newborn Intensive Care Unit and the BC Women's Foundation Hope Starts Here campaign.

 

Canadian Premature Babies Foundation

The Canadian Premature Babies Foundation website includes information and resources for families.

This article was written by Anne McLaughlin with information provided by the BC Women's Newborn ICU social worker Pascale de Kerckhove.

 


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