Patient Care

Working with Families in the Intensive Care Nursery

November 2011Andrew Schwartz

A conversation with Linda Franck, Chair of Family Health Care Nursing, and Sandra Weiss, Robert C. and Delphine Wentland Eschbach Endowed Chair in Mental Health Nursing:

Can collaboration among families and clinical staff in the intensive care nursery ease infant and parental distress – and help prevent a lifetime of health challenges?

Are children who spend their first days of life in the intensive care nursery (ICN) more at risk for long-term health concerns?

SW: Research suggests that these infants experience more physical and mental health problems later in life, but the outcome depends, to a great extent, on their environment after they leave the ICN. My own studies have shown that when parents provide neuropsychological enrichment and emotional support, they can buffer any early trauma the child experiences.

So how might a more collaborative relationship between parents and health care professionals in the ICN affect long-term outcomes?

SW: Some fascinating work has shown that, shortly after birth, babies respond to the unique characteristics of their mom’s voice or touch differently than they respond to other individuals. So a parent’s involvement in care may provide a sense of stability and security to babies in the ICN. Nurses and physicians can build on this relationship between infant and parent to reduce infant stress during hospitalization and better prepare parents to manage infant distress after discharge.

LF: My research in the UK found the intervention we used [to increase collaboration] led to an increase in parents’ confidence and competence at home. Our research and another study in Canada also found that parent presence increases the frequency that nurses document pain assessment and the amount of sucrose they give to infants prior to heel sticks to reduce stress. Parents’ ability and inclination to be present vary, but if parents are more informed and shown how to help their infant, we think that can help.

Sandra Weiss and Linda Franck Which leads us to your current project in collaboration with UCSF Benioff Children’s Hospital.

LF: ICN nursing and medical staff were very interested in improving the partnership between parents and nursing with the goal of having parents better prepared to care for these babies and achieve better outcomes. We worked closely with them to come up with a protocol and implementation. We converted the written intervention [from Franck’s previous work] into a DVD, so parents could see the techniques more easily as well as read about them. Phase two involves pilot testing. Half of the families receive the intervention and half have usual care. We will measure parent stress, the level of parental involvement, and the babies’ reaction to heel sticks and immunizations.

SW: One of the important outcomes we will assess is how the infants respond to stress, both in the ICN and at home. Will infants whose parents learn the comfort techniques be able to cope with stressful and painful situations more effectively? We will also look at whether parents maintain the techniques two months after hospital discharge, and if it makes a difference in their ability to help infants regulate emotional distress at home.

What are the techniques?

LF: For example, you can reduce the stressful environment by lowering light and noise, both of which can exacerbate pain. We help parents read cues and understand signs of pain. Then there are certain handling techniques, such as how to swaddle and hold.

SW: If a baby is to have a procedure like a heel stick laceration, breastfeeding or skin-to-skin holding has been proven to reduce distress. We’re also giving parents suggestions for how to adapt the techniques, so if they can’t hold the baby during a procedure, they can still use their voice or touch the baby’s head, or hold a tiny hand in comforting ways.

LF: These things can reduce parental stress, too, because parents are extremely worried about the long-term effects of the ICN stay and want to do something about it.

How does collaboration with ICN staff help parents with these techniques?

LF: There are the booklet and DVD, which is something parents can look at on a computer, either right there in the ICN or at home. A nurse will initially present this to them and work through every aspect of how to look for pain and comfort babies. Parents will keep a log, and the nurse will show them how to use the techniques with their baby at specific times.

Beyond this study, touch and emotional availability appear to have important implications for healthy child and family development. How should the existing knowledge base affect clinical care?

SW: My previous research has found that babies with different temperaments have different physiological and behavioral reactions to being touched and comforted. It may be dangerous to assume that a certain approach to care is the right approach for every child. In an ongoing study, I’m examining how different types of reactivity to caregiving may be linked to specific genotypes, the child’s stress hormones and later mental health problems. By understanding the clinical profiles of various infants, we can better tailor our care to assure optimal outcomes.

LF: We have to do an individualized assessment to match the care and environment to what each infant needs in terms of their sensitivity and stage of development, because the other important message is that if babies have a lot of noxious stimulation over time, it can have long-term effects. We and others have research findings that suggest that babies who have had a lot of painful procedures have a subtle but different profile in responding to certain tactile stimulation when they’re 10 or 15. Whether that has an effect on daily life, we’re still trying to find out.

SW: And there is a growing body of research which shows that children who have difficulty managing their stress and emotions are much more vulnerable to depression, anxiety and disruptive behavior. Early problems in regulation of the hypothalamic-pituitary-adrenal axis (our body’s stress response system) can lead to mental health problems if left untreated. By teaching parents in the ICN how to reduce their infant’s stress, we may prevent these problems and build a stronger foundation for the child’s later mental health.

LF: But we don’t know where the thresholds are – how much is too much, whether there are critical or sensitive periods. The message to clinicians now is to be more mindful. Consider whether you really need to do each and every procedure because it can have a cumulative negative effect on the infant’s developing nervous system. Clinicians should appreciate what a powerful role they have in relation to parents. Their willingness to listen to parents’ concerns, provide understandable information and teach parents how to read their baby’s cues can have a positive impact on the parent-infant relationship long after they have gone home from the ICN.