PARTNERS IN PERINATAL AND PEDIATRIC CONSULTING
Supporting Parents in the NICU—and Beyond
While you may find your job incredibly rewarding, it can also be incredibly distressing. Working with sick and struggling infants can be discouraging and emotionally depleting. Watching their suffering can be painful. Some babies die or have chronic problems, and you grieve for them and their families. You will witness many mothers and fathers with broken hearts. But you will also witness joy, triumph, and growth—emotional growth in the parents and physical/developmental progress for their babies.
In recognition of the inspiring as well as challenging and draining aspects of your job, we offer the following relationship-centered tips for supporting parents in ways that honor their needs as well as your own. Some of these pointers are more applicable to NICU settings while others are broader, encompassing maternity, NICU, follow-up care, and bereavement care. Take what seems useful and find the balance that works for you.
Consider “relationship-centered care” to be so much more than just a protocol or set of techniques. It is a positive attitude that welcomes parents into the NICU as full partners in taking care of their baby. It is a philosophy that provides a respectful, collaborative environment where everyone recognizes that the baby is part of a family and that the family is part of the health care team. A fervent mission is to reinforce the relationship between parents and their babies by honoring their central roles in caregiving and decision making, and supporting them in nurturing their babies and making the most appropriate decisions. Consider developing and posting your “unit philosophy” so that parents will know from the start that you believe their presence in the NICU is important, you regard them as members of their baby’s health care team, and you respect their observations and contributions. Make sure that all of your NICU staff members are on board by providing them with the education that they need to understand and implement the unit’s philosophy, a forum to discuss their questions and concerns, and adequate staffing and encouragement to give them the support they need.
Recognize that you are the host and also the guest. Relationship-centered care recognizes the power that families possess in determining their own paths and eliminates the power differential that exists between them and medical staff. In order to truly collaborate with families, you must hold the attitude that you are the host and you are the guest. So for instance, when you go to the bedside of a baby, you are the host because the baby is in your unit; you are the one with the expert medical knowledge; you are the one who invites the parents to become members of the health care team; you are the one who guides them through their NICU course. But at the same time you are also the guest: You are in their “family space” in the unit; you are brought into their family crisis to be a trusted consultant; when you connect with the parents and their infant, you become a guest family member; you walk with them on their personal and family journeys. As the host, you have much to teach families; as the guest, you will learn so much from them as well. Feel the honor in both of these roles.
Provide developmentally supportive care for babies and parents. In the NICU, providing developmentally supportive care is central to implementing relationship-centered care. Developmentally supportive care promotes health and development in babies because it is sensitive, responsive, appropriate, and individualized. When you provide developmentally supportive care to babies, in effect you are also providing one important component of developmentally supportive care to the parents, because it reflects, affirms, and accommodates parents’ natural urges to nurture and protect their babies from the harsh or overwhelming aspects of intensive care. This fosters their growing competence, confidence, and bond with their little one. Developmentally supportive care also mandates close physical contact between baby and parent, often through touch, kangaroo care, and feeding at the breast, with precious few circumstances getting in the way. Incidentally, when your unit provides the education, resources, staffing, and support you and your colleagues need to carry out family-centered care, that means that you’re getting developmentally supportive care for yourself, which promotes your health and growth as a professional.
Help parents gather together all the parts of their story. Because delivery, early days in the NICU, and medical crises are usually chaotic and traumatic times, most parents will have gaps in their memories and knowledge about what happened, both to the mother and the baby. Parents benefit from going over the details of the labor, delivery, and NICU care with the attending nurses, obstetricians, and neonatologists. Asking, “What happened?” and “Why?” is a way for parents to reclaim memories and satisfy their need to know. Remember that their questions are not meant to second-guess or attack, but to fill in the gaps. When a parent can create a coherent narrative, it is profoundly healing.
Address feelings first. Before you talk to parents about the medical issues, acknowledge the emotional issues. Sit down and ask parents, “How are you doing with all this? What does this feel like for you? What are your concerns?” Help them to verbalize their feelings and help to normalize them, for example, “I can see how disappointing this is for you—many parents feel this way.” Stay with them and give them both the attention and space they need. By being emotionally available and inviting them to express and share their experiences with you, you’ve begun to develop a relationship. Building a rapport with you helps parents negotiate the emotional terrain, which in turn helps them listen and absorb information when you talk about the medical terrain. With emotions out on the table, when you start discussing the medical facts, issues, and options, you will probably find that parents are more able to fully participate in these difficult conversations. Any time you can really be with the parents, walk the emotional journey with them. Ultimately, it will make your job easier. You’ll be a more effective supporter and teacher, and parents will see you as their ally and teammate, which makes for a trusting, collaborative relationship. Your collaborative and emotionally supportive relationship with the parents is in the best interests of the baby who is in your care.
Expect a variety of emotional responses from parents, including detachment, anxiety, anger, sadness, vigilance, and depression. Adjusting to a baby’s birth, hospitalization, and outcome is a process, and parents can experience a wide range of intense and often contradictory feelings. Each parent brings with them a personality, temperament, and baggage that will affect how they cope. Respect differences, and remember that you only know a small bit of their larger emotional stories.
Show parents their baby. When you introduce new parents to the NICU, before you point out the equipment and technology and lay of the land, first take the time to introduce them to their baby. Ignore the tubes and wires and talk about the baby first, and as a person instead of a medical case. Point out the “normal things”—the soft ears, downy hair, long torso, tiny fingers, and facial features. Address issues of the baby’s comfort such as warmth, positioning, pain control, and shielding from harsh lights and noise. Tell them about the importance of parental touch. Talk about the ways that tiny babies show how they know their parents, such as changes in heart and respiratory rates and turning toward voice, touch, and smell. Make sure that you know about developmentally supportive care and reading babies’ signs of distress and relaxation, and start teaching the parents about how they too can learn to read these cues and respond to their baby’s need for comfort.
Show parents you care about them. Parents won’t care what you know until they know that you care. Tell them you are glad to be attending to their baby and, while you know it’s not the same as being the parent, you’ll do your best. This reassures them that you aren’t trying to commandeer their parenting role, but you are invested in their child, and will take good care of their little one.
Encourage parents to enjoy their baby, but elaborate on what you mean by that. Many parents are in agony, and the suggestion that they enjoy this baby can infuriate them. First tell them that you know this is a difficult time for them, full of uncertainties, fears, and other painful feelings. Reassure them that you are here to support them through this turmoil. Then gently express your hope that they can remember that in spite of the difficulties, their baby is a precious little one, growing and changing before their very eyes, and there is so much for them to witness and marvel at. Encourage them to enjoy what they can about the baby, because this will give them respite from the harder parts of the NICU journey.
Consider writing notes to the parents in the form of a “diary from their baby.” The idea of baby diaries was developed at Simpson Maternity Hospital in Edinburgh, Scotland, when the nurses began leaving messages and notes for the next nurse coming on shift. They began sharing these “diary entries” with parents who were delighted and comforted by these little notes “from” their babies. As one mother says, “It made me giggle and made me cry. … It really helped with the bonding process and helped us accept this wee scrap of fighting life as our son.” Of course, some nurses will feel more comfortable and confident doing this than others will. And not all parents will be open to this lighthearted touch. But for many, it will give a much-needed break from the grind of having a sick baby, and they will treasure these diaries. Diaries are also powerful, cherished mementos for parents of babies who die.
Accommodate the parents’ need to be involved with their baby. Instead of expecting parents to accept the constraints of a technology-centered NICU, expect your NICU to accept the parents’ need to be close to their babies. Tell parents that their presence, touch, observations, advocacy for, and parenting of their babies are valued. Encourage their participation in the baby’s care, making room for them to do as much as possible, and involve them as full members of the health care team. This partnership with you helps them build skills, exercise their parenting abilities, and acquire feelings of competence. Obtain their consent for everything but emergency procedures and treatments. This reminds them that you know that this is their baby and demonstrates your respect for their role as primary nurturers and decision makers, which supports them as they come into their own as confident parents of this child. More importantly, when their consent is required, they become their child’s primary advocate and protector, which facilitates bonding with their infant. Recognize the importance of “firsts” and the parents’ desires to be there whenever possible to witness and participate in milestones. Reassure them that you share a common goal: to get their baby healthy enough so she or he can go home.
Keep parents informed during their baby’s roller-coaster course. Parents benefit from knowing the whole story—the good, the bad, and the uncertain. If their infant’s prognosis is poor or uncertain, they have a right to know that not every baby comes out of the NICU unscathed. You can tell them this without extinguishing their hopes. Still, when a baby has a major complication or setback, telling parents can be very difficult. Bad news is hard for them to hear and some parents may not seem to absorb it. And sometimes, what you consider a minor setback in their baby’s course can feel monumental and devastating to the parents. You may feel like you want to spare them by not fully disclosing the details. Unfortunately, keeping parents in the dark robs them of their ability to master reality and reinforces unreasonable expectations. Keeping information from parents also creates barriers between them and their baby, and spawns anger and mistrust toward their baby’s caregivers. The parents may even question your motives and assume you are trying to protect yourself, not them. In any case, withholding information from them does not protect them. It’s your job to support them, not hide the truth from them. It may also help to remember that because knowledge is empowering, it is far easier for parents to cope with the grief they feel when facing bad news or uncertainties from the outset than to cope with the confusion, disappointment, and disempowerment bred by half-truths and cover-ups. Most importantly, when parents are fully informed, they can be fully present and involved with what’s going on, which in turn enables them to integrate what is happening to them and to their baby. Parents may encounter some painful situations, and you may be tempted to protect them from being overwhelmed or scared. But sometimes the truth is overwhelming and scary. If you’re having concerns, remind yourself that by sharing information about their baby, you are drawing parents into the circle of caregivers, which in and of itself provides comfort and instills confidence and courage.
Instead of walking away from parents, walk with them. You serve parents best, and your job is made easier in the long run, if after you speak honestly and openly, you then support them with compassion and a listening ear as they face painful feelings head on. This is how you walk with them. So instead of worrying about how parents will react when they hear bad news, or trying to figure out how to soften the blow or “fix” them, accept that they are entitled to whatever reactions they have. Simply be present with them as they face the situation and their emotions. You can help them cope by acknowledging their feelings and answering their questions. They’ll benefit from your calm presence and empathy.
Accommodate parents’ unique and changing needs for information—and help them stay focused on their baby. Although your goal is to keep parents fully informed, you must be responsive to what “fully informed” means to each parent. Some parents just want to know what is going on with their baby right now, while others also want to know every etiological detail you know and every future possibility you might surmise. Some parents want to be spared all the “gory details” and just given the big picture, while others want a crash course in neonatology. Some parents just want the most basic information at first, adding layers of knowledge over time, while others want it all right away. So rather than loading up parents with standard information, take into account what the parents really want to know, their biggest concerns, and their readiness to absorb facts and advice. Say to parents, “Let‘s talk about what’s going on so you can figure out what you want to know,” and then follow their lead. Parents will be grateful for your responsiveness to their style of information gathering and mastery. And when parents are overwhelmed with information, you can help them narrow their focus. For instance, you can disclose all the risks of a treatment and be more specific about what that may realistically mean for their child. You can refer parents to the research and help them interpret the implications for their infant. Also, always keep in mind that when you are sharing information, you’re not giving a report, you are building rapport.
Be honest about uncertain or grim prognoses. One of the hardest answers to give a parent is “I don’t know.” However, parents would rather hear that, than your guesses and opinions presented as facts or guarantees. Simply acknowledge the uncertainties of the future, and be honest in saying that this child has a lot to overcome—but you have no crystal ball. To parents, there is a huge difference between predicting with certainty, “Your child will never be able to … ” and explaining with uncertainty, “I’ve never seen a child with these sorts of complications be able to … , but babies can be unpredictable.” Parents will appreciate uncertainty as a show of sensitivity and integrity. While it can be painful for parents to discover that medical technology cannot always predict or cure, your honesty about uncertainty creates a bond that will benefit all of you. Perhaps harder than “I don’t know” is “There’s nothing more to do but comfort care.” If it looks like the baby is turning away from the path that leads toward home, keep parents abreast. Parents benefit from being included when goals change. Knowing that their baby is dying allows parents to make the most of the time that’s left and to make plans that are meaningful to them. Likewise, if the baby has catastrophic problems that require long-term hospitalization or that may become permanent or chronic, parents need to be informed as soon as possible so they can adjust their expectations. When you are honest with parents, their hopes don’t disappear, they just gradually change direction.
Be a decision collaborator and sometimes a decision leader. When a baby’s prognosis is certain and the treatment plan is clear, be a decision leader. For instance, when the baby’s survival is virtually certain and standard interventions are in order, you can bring the parents on board by informing them about what is happening and why these treatments are in the best interests of their child. Likewise, when the baby’s death is virtually certain and comfort care is the best option, you can bring the parents on board by informing them about what is happening and why these treatments are in the best interests of their child. But when the prognosis is uncertain or if experimental treatments are an option, be a decision collaborator. Bring the parents on board by explaining the options, risks, benefits, and outcomes, and inviting them to be central partners in the decision-making process to determine what is in the best interests of their child.
Slow down and listen to parents. Most of us need to become better at slowing down and listening. This means giving parents information and then being able to sit quietly and patiently with them. Encourage questions and then stick around to give parents time to formulate those questions, express what’s on their minds, and note anything that is still unclear to them. Open the door to questions that the parents may be having trouble formulating. Normalize this process by saying something like, “It takes time for parents to form questions. Do you have things on your mind that you want to talk about, even if you’re not sure if it’ll make sense?” Be comfortable with silence, as parents need time to think, ask, and respond. Validate how difficult their baby’s hospitalization must be for them and ask them, “How are you doing with all this?” Consider recording these meetings (see below), so parents can have the opportunity to listen again when they feel less overwhelmed or shocked by the information. Also be present and available for follow-up chats in person, by phone, Skype, or by e-mail. By being accessible and going at the parents’ pace, you increase the likelihood of them absorbing the information you give.
Record your conversations and give parents a copy. Although there is a new movement to record care conferences and give recordings to the parents, many caregivers are wary. But there are many benefits. Besides being able to absorb what you say, the can share recordings with relatives, sparing themselves the daily grilling. If you agree that parents don’t always remember what they are told, recordings can be a remedy. If you are worried that recordings will only encourage parents to obsess, remember that they can and will obsess even without them. Recordings can ground them in reality, and in fact, you might encourage them to listen to the information as many times as they need. When parents have access to recordings, they can be more satisfied with professional-parent communication, and have a better working relationship with you—which as you know, reduces the chances of lawsuits being filed against you. If you behave in a responsible, professional, ethical manner, you have nothing to hide, and a recording cannot be effectively used against you.
Accept the parents’ right to cry at their baby’s bedside. Tears don’t hurt babies, and parents often benefit from shedding tears in their baby’s presence. Give parents their space and privacy when they cry, because your presence, touch, or words may convey the message to “calm down and dry your tears.” If one parent’s tears lead to another’s, accept that floodgates will open sometimes in the NICU. If your unit culture respects a range of expression by parents, this is a sign that you are providing an emotionally healthy and supportive place. Another healthy sign is that limits are set. If a parent is losing control and behaving in ways that intimidate or endanger anyone or anything, they will benefit from your gentle intervention to help them calm down or to lead them to a place where they can vent without restraint. When your instinct tells you that things are getting out of hand, trust it and act quickly and decisively.
If a parent is venting anger toward you, don’t take it personally. Even if the parent personalizes the attack, remember that it’s the situation that deserves those charges. If you can listen and acknowledge their anger, this can help diffuse it. Validate their attendant feelings of powerlessness, confusion, shock, hurt, and fear. Agree with them that this situation holds many disappointments and uncertainties, and that it can be really hard to deal with. Acknowledging and validating their painful feelings shows them that you are an ally, not the enemy. It also shows them that they can feel angry and not lose your support.
Avoid judging parents. It is tempting to make snap judgments when parents behave in ways you consider inappropriate, especially toward their babies. But you don’t know their whole story, their background, or the hurdles they experience. For parents who live far from the hospital or who are without transportation, funds, babysitters for older children, strong social support, or emotional resources, spending a lot of time with their baby can be more than they can manage. Negotiating the maze of continued medical and developmental follow-up may be unduly burdensome. Their lives may be way more chaotic than you’ll ever know and having a sick baby might be just a drop in the bucket, rather than the center of their existence. Parents do the best they can, and while that may not seem adequate, it’s still their best. Judgment is a poison; empathy is a salve—for them as well as for you.
Give parents the benefit of the doubt. Recognize that even though many parents become overwhelmed at some point or may seem bumbling or incompetent, they do have a life outside the NICU where they likely function very well. Try to see them as competent people who need time to find emotional equilibrium and learn the ropes in this unfamiliar, often scary situation.
Deal with difficult parents. Every parent comes to the unit with a unique personal history and a skill set for coping with adversity and stress. First assume that any distress or deficiency you’re observing is a result of the trauma of having a sick infant. If your efforts to support a parent seem ineffective, call for a psychiatric consultation and collaborate with your affiliated mental health care providers who are knowledgeable about both perinatal stress and psychological dynamics. When a parent needs support above and beyond what your best efforts can supply, recognize the limitations, don’t take criticisms to heart, and rely on the staff who can work best with these folks.
Make referrals. Most parents can benefit from support or assistance beyond what you offer, so refer them to resources and get other agencies involved. Most parents would benefit from a support group or psychological counseling. Getting additional assistance outside the NICU will help them get back on their feet, as well as give you peace of mind and the ability to let go, especially with particularly needy parents. If services are lacking in your area, church groups, online groups, and national organizations can be important resources. Let parents know that there is a network of parents with babies like theirs. They deserve the benefits to be gained by plugging into it.
Show cultural sensitivity. Nowadays, diversity is the norm. Whether you work in a large metropolitan area or a small village, remain open-minded and become culturally aware.
- Even if the parents look, act, or talk like you, do not assume that they feel like you or think like you.
- Remember that some people have a basic fear or distrust of authority figures. Whether they hail from foreign countries ruled by corrupt or brutal regimes or live in the oppressive inner cities of your region, some parents will not automatically look to you for help and support. You can earn their respect and trust, but it may take extra time and effort.
- Always ask parents about their religious and spiritual beliefs. Ask about their rituals for celebrating life, dealing with crisis, and if the baby dies, for honoring the dead. If they follow established traditions, seek clarification from other family members or cultural and religious agencies.
- Encourage the supportive presence of many family members. Remember that loud displays of weeping are considered normal and appropriate in many cultures.
- Look beyond language barriers and relate to the person. When using a translator, maintain the most common usage and keep your words to a minimum. This reduces the chances of filtering, mistranslation, or confusion. Be aware of the importance of nonverbal communication. Touch and eye contact are more appropriate in some cultures than others.
- Even when English is the common language, choose your words sensitively. For example, you might want to stay away from the phrase “quality of life” because a family may feel as though you’re judging them and their baby, implying that they are incapable of providing a quality life for this child. Instead, talk about “suffering.” And rather than wondering if parents distrust you because you are from different cultures, ask, “Are you worried that there are medical treatments we aren’t offering you?” This gives families a chance to air their concerns and get reassurance.
- Your best credentials are your warmth and sincerity.
Honor the journey that parents are on. Instead of trying to get parents to make the “right” decisions or helping them cope “the right way,” remember that your job is to walk with them on their journey. Recognize that while you have much to teach parents, they have much to teach you as well. And how well you listen is more important than what you say. You can shine a light on the options and be a sounding board, but ultimately, you must let them go down the path they feel drawn to.