17: Families in Crisis

CHAPTER 17


Families in Crisis


Carole Kenner; Marina Boykova



With current technological advances, even the most acutely ill or most premature infant has a good chance of going home. Neonates born as prematurely as 23 weeks of gestation are surviving. Although these advances are increasing the odds of having a live neonate, for parents, they also have brought on tremendous stress that lasts through the first years of the infant’s life (Gray et al., 2012). When a newborn infant requires intensive care at birth because of illness, prematurity, or congenital malformations, or when an infant dies, the effects of these unexpected events on the parents can be overwhelming. The families of these infants may experience multiple crisis events during the infant’s hospitalization and after discharge. The focus of this chapter is the psychosocial aspects of supporting parents who must cope with stressful events surrounding the birth of their infant. The chapter highlights various types of families who may experience a crisis when their infant undergoes a neonatal intensive care unit (NICU) stay or a perinatal/neonatal death.


CRISIS AND THE BIRTH OF THE SICK OR PREMATURE INFANT


Pregnancy and transition to parenthood are periods of stress and change during which mothers and fathers are attempting to master the normal developmental process of parenthood (Emmanuel and St John, 2010; Miller and Sollie, 1980; Nelson, 2003). These major life changes are referred to as developmental or maturational stressors. In contrast, the birth of a premature or sick infant and the death of an infant are unexpected stressful life events for which a person or family is often psychologically unprepared (Watson, 2011). Such events are referred to as situational or accidental stressors. When such maturational and situational stressors occur simultaneously, the resulting pressure can overwhelm a person’s usual coping resources and support system, thus leading to crisis.


A. Definition of crisis. Crisis is defined as a temporary disequilibrium that occurs when people face an important problem or transitional phase so stressful that they are unable to cope by using their customary problem-solving resources (Howland, 2007). If parents do not successfully work through the increased demands, ineffective coping may result. Ineffective coping causes personal and family psychological disequilibrium or crisis, which continues until new ways of coping can be developed and maintained (Caplan et al., 1965; Kaplan and Mason, 1960). Coping, however, is intimately tied to social support (Sheppard, 2009), resources available (Pinelli et al., 2008), cultural values and beliefs, and, in some instances, spirituality (Heidari et al., 2012; Holditch-Davis et al., 2009; Kenner et al., 2014), so these must be taken into account.


B. Several psychological tasks have been identified that the mother and family must accomplish to cope with the crisis of a premature birth or the birth of a sick infant and to establish a basis for a healthy parent–child relationship. These must take into consideration the psychological health of the mother and its impact on parent–infant interactions.


1. Acquisition of parental role. Alteration in parental role related to the infant’s sickness and hospitalization leads to diminished parental feelings of attachment to the infant and decreased parental confidence in their own abilities to give care (Holditch-Davis et al., 2011; Miles et al., 2011; Zabielski, 1994). Alteration in parental role has been named as one of the major stressors for parents during the infant’s/child’s hospitalization (Miles et al., 1989), which in turn influences the parent–child relationship (Anderson et al., 2010; Miles et al., 2011).


2. Preparation for the possible loss of the infant. Parents often consider the possibility of disability or death of the infant while simultaneously hoping for the infant’s survival (Bennett et al., 2005; Dyer, 2005; Fraley, 1990). This uncertainty about outcomes also influences parent–child relationships and parental well-being, leading to increased levels of anxiety.


3. Acknowledgment of failure to deliver a term infant. The mother struggles with feelings of guilt (Garel et al., 2007) and failure while grieving about the loss of an “ideal” infant. Often parents search for causes of the infant’s condition. Family members may actually be, or be perceived as, blaming the mother for the premature infant (Golish and Powell, 2003; Shah et al., 2011). Family members may also feel guilty as if they too have contributed to the infant’s condition.


4. Adaptation to the intensive care environment. Environmental stressors of the NICU (e.g., lights, noise, and equipment) influence parental well-being and perception of an infant. Parents struggle to develop secure relationships in the unfamiliar and stress-provoking setting of the intensive care unit (Bozzette et al., 2010; Korja et al., 2012; Lutz et al., 2009; Reyna and Pickler, 2009).


5. Resumption of interaction with the infant once the threat of loss has passed. Parents begin to make efforts to participate in the infant’s care and gain confidence in their caregiving abilities (Raines and Brustad, 2012). Parental interactions may be adversely affected because of the effects of posttraumatic stress, depression, and fear that something might still happen to the infant (Cho et al., 2008; Jubinville et al., 2012; Placencia and McCullough, 2012; Vanderbilt et al., 2009).


6. Preparation for taking the infant home is another extreme task for parents (Smith et al., 2009, 2012). Parents must understand the special needs and characteristics of the premature or sick infant and the necessary precautions that must be taken and yet maintain a positive relationship with the infant, realizing that these needs are only temporary. Failure to resolve these tasks can contribute to such maladaptive parenting as being overprotective, resulting in the “vulnerable child syndrome” (Kokotos and Adam, 2009), or compensatory parenting (Miles and Holditch-Davis, 1995). Other negative parental outcomes include emotional disengagement and deprivation and low adherence to follow-up recommendations (Ballantyne et al., 2012) that may affect infant development and growth (Welch et al. for the Family Nurture Intervention [FTI] Trial Group, 2012). The psychological impact of having a sick infant often continues after a successful discharge, resulting in parental psychological distress postdischarge (Boykova and Kenner, 2012; Kenner et al., 2014; Meijssen et al., 2011a; Rowe and Jones, 2010).


C. Discussion. During the crisis periods, parents often display signs of anxiety, depression, increased levels of stress, fear, and powerlessness (Mackley et al., 2010; Nyström and Axelsson, 2002; Padovani et al., 2009; Solberg et al., 2011). They also may exhibit symptoms of acute posttraumatic stress disorder (PTSD), as well as physical or cognitive problems (Jubinville et al., 2012; Meijssen et al., 2011a; Vanderbilt et al., 2009; Wray et al., 2011). A family in crisis cannot effectively interact with their newly born infant because all their energy is going toward the crisis resolution. During the crisis period, parents are more receptive to overtures of help from other family members, friends, and the health care team. Nurses are in a key position because they work so directly with the parents to anticipate a family crisis and to promote positive coping and effective use of social supports. When interventions are put into place to promote effective coping and positive social support, the crisis will resolve and psychological equilibrium, a necessary step toward the establishment of a healthy parent–child relationship, will be restored. Factors that influence a family’s return to equilibrium include the following (Kenner et al., 2014):


1. Understanding of the infant’s health problem and the need for NICU care, and understanding of their parental role.


2. Resolving or at least lessening of the family’s grief and guilt reactions to the need for NICU care.


3. Involving parents in caregiving activities as partners in care, and not visitors.


4. Changing the focus to patient-centered/family-centered care.


5. Using positive coping and social supports.


Grief and Loss


A. Introduction. Unfortunately, not all pregnancies result in a healthy term infant. When adverse neonatal events occur, often the parents are overwhelmed by grief (Dyer, 2005; Golish and Powell, 2003). As the parents realize that their newborn is “less than perfect” and not the infant of their fantasies, acute grief reactions occur. Grief is also related to the loss of an experience of imagined parenting activities, such as if birth hospitalization did not occur, and the absence of symbolic rituals (i.e., baby shower). With neonatal death, the parents also grieve for the lost opportunity to parent the child. Because a lot of uncertainty about outcomes is present (as is the case with a preterm infant), the loss can be ambiguous, making parents physically and emotionally exhausted (Golish and Powell, 2003).One of the early tasks of parenting is to resolve the discrepancy between the idealized infant and the real infant. The acceptance of the perceived “loss” is vital for resolution of grief (Golish and Powell, 2003). To assist parents therapeutically in working through the feelings associated with loss, nurses working with high-risk infants must understand the grief process, recognize typical parental behaviors associated with grief, and provide appropriate nursing interventions. It also may be appropriate to help the parents actively plan the care of their yet-to-be-born or dying infant through use of an advance directive (Catlin, 2005). Much like in the adult, the advance directive during either the prenatal or the neonatal period allows the parents to say what they wish to be done and whether or not they want to “allow a natural death,” a term much more acceptable than a do-not-resuscitate order.


B. Definitions.


1. Grief: the response of sadness and sorrow to the loss of a valued object (Kenner, 2014).


2. Anticipatory grief: grieving that occurs before an actual loss. If the outcome for the infant is healthy, then anticipatory grieving can lead to difficulties in attachment and problems in the parent–infant relationship.


3. Chronic grief: unresolved or blocked grief; frequently seen in parents of a disabled child, who is a constant reminder of loss.


4. Chronic sorrow: grief response associated with ongoing living loss that is permanent, progressive, recurring, and cyclic (Gordon, 2009).


C. Signs of grief reaction include: sadness and despair, denial, numbness, shock, disbelief, and anger as well as fatigue and sleep disturbances (Golish and Powell, 2003). Uncomplicated grief resolves through the stages of shock and disbelief, then developing awareness of the loss, and finally recovery in the form of reestablishment of well-being (Teel, 1991).


SPECIFIC POPULATION OF PARENTS: ADOLESCENTS


Parents who are adolescent have some unique needs. They undergo the crises of parenthood and of having an infant in the NICU. In addition, these parents are dealing with the normal developmental tasks of adolescence. Sometimes these tasks seem to be in conflict with their needs as new parents. The nurse must be aware of these conflicts and realize their unique blending needs of taking on a new role and being at their developmental stage.


Adolescence is a turning point, or change period. It moves a child from childhood toward the maturation of the adult. Many physiologic changes are occurring, first at puberty and then in the move toward adulthood. Physical appearance changes and the adolescent is capable of childbearing. Maturation of the reproductive system now occurs much earlier than in the past. In the United States, girls are reaching menarche as young as 8 years of age. Adolescence is the time when childbearing becomes a potential reality for most individuals.


Development of the personality is tied to role attainment, much as for parents and the parenting role. Adolescents strive to have an identity unique from those of other family members. They are developing their self-concept and self-esteem. The peer group becomes important for validation of attitudes, values, and beliefs. However, adults can model this peer validation to enhance positive developmental outcomes for adolescent parents (Dishion et al., 2002). Adolescence is a time of constant change and usually turmoil—a period of maturational crisis.


A. Some developmental tasks of this period are:


1. Independence from adults.


2. Preparation for financial security.


3. Gender identification.


4. A stable, realistic, positive sense of self.


B. In addition, adolescence:


1. Is characterized by high anxiety.


2. Can be anticipated, and therefore preparation can be made.


3. Requires normal social support for a successful transition.


4. Is relatively easy to resolve because the individual’s values usually do not conflict with societal expectations for the outcome, which is adult behavior.


5. Is a period of vulnerability to a crisis occurrence if a traumatic event is added to the transitional state.


While adolescents have unique needs, they also are unique individuals. As health professionals, we often make assumptions of what they need or what type of parents they will be. The reality is they need to be assessed for their knowledge, level of crisis, and supports the same as any other individual or family. It has been shown that adolescents often underestimate the severity of their infant’s illness (Boss et al., 2010) and require increased levels of informational and esteem/appraisal supports (Grassley, 2010; Logsdon and Koniak-Griffin, 2005). Perception is all there is—right or wrong—and health professionals should not perceive that all adolescents will be bad parents, or immature in their actions, or be more concerned with peers than with their child (Chittleborough et al., 2011). Health professionals must evaluate parental needs of adolescents certainly within the context of their developmental stage but also with consideration of their own personal, individualized needs (Riesch et al., 2010).


THE FAMILY IN CRISIS


Assessment


A. Determine parents’ understanding of the situation (i.e., realistic vs. distorted). The parents’ ability to resolve the crisis depends on their realistic perception of their situation: they need to be fully informed about their infant’s condition and expected progress/outcome. An inability to understand the crisis may be related to low socioeconomic status, educational level, or cultural values and beliefs. Parents of a lower socioeconomic status or educational level may not fully understand what to expect of their infant or their role because they may lack good role models for themselves or the financial means to provide adequate, safe care for themselves or their infant. Older mothers may have difficulty in coping as they are used to being in control of their situations. They may actually blame the health professionals for the adverse outcomes of their pregnancy and delivery. Cultural values and beliefs also may play a role because different cultures view the infant in relationship to parents in different ways, and these parents’ view of health and death may be different from the typical U.S. views; in addition, occurrence of depression might be influenced (Callister et al., 2010; Zauderer, 2009). In some countries, such as in India or China, only male offspring are valued, and girl babies are dismissed as nonessential; in some countries, such as Iran, the birth of infant that has been hospitalized in an NICU leads to stigmatization (Heidari et al., 2012). Whereas we often crave control over the environment in Western culture, other cultures may view this as fate. Native Americans usually accept what is. Blacks are more oriented to specific situations than time. Latinos value the inclusion of the extended family and view death as having rituals associated with it; touching an infant’s head is seen as threatening by some Southeast Asians, Buddhists, and native Hawaiians; and Middle Eastern children make few independent decisions (a consideration when working with adolescent parents if their extended family is not present). When crucial conversations are necessary, the family’s cultural values must be considered (Cone, 2007).


B. Determine parents’ grief response. The extent to which parents are experiencing grief must be determined. Grief responses to death, premature birth, or the birth of an infant with a malformation are similar. These responses do not necessarily occur in the same sequence for all people. They are mediated by cultural beliefs and values as well as the parents’ developmental stage (Whitaker et al., 2010). In addition, the responses may overlap and recur. PTSD often results from just having an infant in an NICU but is exacerbated if the child actually dies. Stages of grief such as shock, denial, anger, and acceptance may or may not be followed. Grief is very individualized and may be in the form of anticipatory grief because the parents fear the infant might die, even though the physical condition does not appear to warrant this fear. Consider this within the cultural context of the family, because it may not be acceptable to express grief or worries to outsiders. If the child is dying, then consider the parents’ perspectives of what they need and want from us and of other end-of-life (EOL) issues, such as advance directives. One of the goals of the staff working with parents is to encourage the development of attachment, or an affectional tie, between the parents and infant. Consider too that dressing the infant in a diaper or loose clothing will allow the parents to have at least one image of their child as a baby and not a dying infant. Because the birth of a premature or a physically, psychologically, or neurologically challenged infant creates a sense of loss, the parents must first resolve their grief before attachment can be fully achieved.


C. Determine parents’ adaptation to and coping with the stressful event.


1. Are the parents maintaining responsibilities related to activities of daily living (e.g., eating, personal grooming)?


2. To what degree has the family’s normal lifestyle been affected by the crisis? (Are they able to return to work? Keep house? Care for other children in the household?)


3. Are the parents exhibiting positive coping skills within the context of their cultural values and beliefs?


4. To what extent has the financial status of the family been affected?


D. Determine what support systems exist for the parents and whether they are being used. It is also important to determine whether these supports are positive. The parents may have several people in their support network, but if these people are critical of how the parents are conducting themselves, then they may not be viewed as positive supports.


1. Who are the significant others in the lives of the parents? Consider biologic kinship (family) and/or emotional kinship (friends).


2. What professional supports are available?


3. Is a parent support group available?


E. Understanding the origins of a crisis and their links with the normal “ups and downs” of life is crucial to successful assessment and intervention. Events that stimulate the occurrence of a crisis, such as those of the teenage parent in the NICU, can originate from:


1. Being in a transitional state, such as


a. Adolescence to adulthood.


b. Childhood to parenthood.


2. Being a part of a social–cultural structure and


a. Violating customs or cultural norms embedded in that structure, such as a teenager’s becoming pregnant and having a newborn, or


b. Behaving outside the accepted teenage social norms, as the role of parent would demand (although these examples are culture-specific): for example, being tied down to taking care of a newborn or having to arrange for child care at a time when peers are freely going to sports, games, and dances and having fun.


c. Being exposed to hazardous or disturbing situations:


(1) Birth of a first child. This is a disturbing situation because no one knows exactly what to expect of parenthood—a role never before experienced.


(2) Lack of experience with parenthood.


(3) Bearing of a sick newborn infant.


Problems Associated With Adolescent Pregnancy


When teens become pregnant, they often experience the following problems:


A. Loss of peer group. Adolescents’ peers often disappear, leaving them without support and feeling socially isolated. Their self-concept changes as they approach parenthood because, before the pregnancy, the peer group helped shape their self-perception.


B. Disruption of family ties. The pregnant adolescent and her boyfriend often bring on direct conflict with their parents. The rationale for this conflict is that the parents of the adolescents often believe that adolescence is an inappropriate time to start a family and that the adolescents need to live by the parental house rules. At the same time, the adolescent parents may be trying to take on adult responsibilities while feeling that they are being treated as children. This conflict removes a possible positive social support. It also disrupts the effort to assume a parental role if the adolescents’ parents try to make decisions regarding the coming infant.


C. Maternal health problems. The pregnant female adolescent often has engaged in risky behaviors besides being sexually active. She may smoke, drink, or use drugs. She is at risk of having human immunodeficiency virus (HIV) infection and other sexually transmitted infections (STIs). This risk is not unique to adolescents but is possible because of the feelings of invincibility that accompany this age. The pregnant adolescent may be emotionally immature and may have to interrupt her education to bear the child. She may be forced into a marriage she does not want or is not ready for at this time. She may lack knowledge about normal fetal and infant growth and development. She may have very unrealistic expectations of an infant and of herself as a parent. She may have sought pregnancy as a way to have someone need her. She may not seek prenatal care or may try to hide the pregnancy by limiting weight gain. These actions may put her health and her infant’s health at risk. She also often lacks parenting skills.


D. Paternal problems. The adolescent father may have engaged in risky sexual behaviors. He may have been smoking or used alcohol or drugs. He also may be at risk of having HIV infection or other STIs. If he is infected, the pregnant adolescent and the fetus are also at risk because these infections can be passed on to the maternal–fetal unit. The male adolescent may be generally stable psychologically, but he may not be thinking about future consequences of his sexual behavior, such as his inability to fulfill his parenting role. For example, because of his risky behaviors, he may have contracted HIV, which will take him away from the pregnant adolescent and his future child. If his family, his significant other, or her family views his behaviors as irresponsible, he may be isolated from an active role in future parenting. He may feel excluded from decisions regarding the continuation of the pregnancy or the placement of the child after birth. He may interrupt his own education to provide financial support to his new “family.” He may be forced into a marriage he neither wants nor is ready for.


E. Risks to the infant. The infant is at risk of having a faulty, or negative, parent–infant interaction, generally because of the parents’ lack of understanding of the normal growth and development process. The parents also often have unrealistic expectations of the child and their role as parents (Hess et al., 2004) and may lack parenting skills. The infant may be small for gestational age or premature and may require an expensive hospitalization that the parents are not ready financially or cognitively to accept. The infant may be less responsive or organized in cues for care by the parents. He or she may be more at risk of having slowed or delayed growth because of the parents’ lack of understanding of normal infant care and feeding practices. The infant may not receive the type and amount of stimulation necessary for positive cognitive or behavioral development. An infant who is premature tends to be more irritable, to feed poorly, to have poor self-regulatory behaviors, and to be difficult to console. This seeming lack of responsiveness to parenting efforts often reinforces the adolescent parents’ poor self-esteem and poor self-concept, which often accompany adolescent pregnancy. The infant may also be at risk of experiencing abuse or neglect.


1. Prematurity, birth between 23 and 27 weeks of gestation, is more common among infants of adolescent mothers. The risk factors for delivering early are (Bowers, 2014):


a. Low pregnancy weight.


b. Lower socioeconomic status.


c. Marital status: single.


d. Tobacco use (smoking).


e. Narcotic or other substance use.


f. Anemia (hemoglobin concentration < 11 g/dL).


g. First child.


h. Poor prenatal care.


2. Low birth weight (< 2500 g) is also a risk factor for an adolescent’s offspring. The risk can be as much as 6 times greater for 14-year-old and younger mothers.


Intervention


Nursing care is generally concerned with both the physiologic and psychosocial needs of the patient and the family. However, nurses are the key health care providers who help parents to overcome the crisis. Assessment skills and appropriate interventions are of vital importance for well-being of family. It is the nurse who is viewed as the advocate for the family and who has the most continual interactions with parents. Importantly, mothers and health care professionals may view the child as medically fragile when this may or may not be the case. Also important, whereas most of the current research focuses on the maternal role and the mother’s level of distress, fathers must be considered too. The father’s perception of a crisis is just as important as the mother’s, and interventions to ease their distress must be part of the preparation for taking an infant home (Boykova and Kenner, 2010). Many of the strategies or interventions are the same for all groups of parents because they represent parenting needs. Cultural influences must also be considered. Below are some interventions and strategies that can help alleviate the pressure of NICU hospitalization for parents.


A. Be present with the physician or nurse practitioner at the initial meeting with the parents.


B. Talk with the mother and father together whenever possible. Consider cultural values of each family. In some cultures, the father must receive the information first (Kenner et al., 2014).


C. Determine and address the parents’ perceptions of the infant’s condition. Talk with the parents and find out their concerns and perceptions. Too many times as health professionals we follow our perceptions and discuss the issues we deem important without validating if these views are shared by the parents.


D. Be consistent with information given to parents by the staff. If in an academic health care setting where the physicians or nurse practitioners rotate frequently, be sure that any changes in care that are reflective only of these staff changes are explained within that context. If parents do not understand the basis of these changes or are not told when their infant’s condition really changes, then mistrust begins. Then the chance that the crisis will escalate is highly probable (Kenner et al., 2014).


E. Do not overload parents with detailed information about their infant during their initial visits to the NICU; provide basic facts and allow the parents some time to process the information. Help parents to understand the information given by repeating the information that is either given verbally or written. Often parents do not hear all of what is said due to their stress. Give them information on the disease process their infant is experiencing so they know what to expect.


F. Assess the grief response. Males and females express their grief in different ways. However, most, if not all, parents experience some form of grief by just having an infant who requires specialized care (Kenner et al., 2014). This reaction must be assessed throughout the hospital stay. Sometimes this response is directly tied to their understanding of the infant’s condition. Other times it is related to cultural beliefs and values.


G. Acknowledge any feeling of guilt that might be expressed about the unexpected birth outcome. Let the parents know that these feelings are normal (Siegel et al., 2011).


H. Facilitate adaptation of the parents’ new role by being a very good listener, by observing body language, and by helping them verbalize their feelings (Siegel et. al, 2011).


I. Periodically assess the parents’ understanding of their infant’s condition and their interpretation of the information that has been given to them. Information must be reinforced throughout the hospital stay. Whenever anyone is anxious, little information is actually heard or retained.


J. Write notes from the infant to the parents concerning the infant’s status (e.g., equipment, feedings, oxygen concentration) and take pictures of the infant periodically. A notebook containing the notes and pictures can be kept at the infant’s bedside for the parents. These can be memory books or scrapbooks that become especially important if the child dies. This intervention should be individualized because not all parents want this form of “communication.” However, for some parents this is one strategy that promotes positive attachment (Siegel et al., 2011).


K. Encourage the parents to keep a journal concerning their experience of delivering a premature or sick infant. This action can assist families to work through their feelings as well as having memories to review what happened and reflect on issues that have been or have not been resolved (Howland, 2007).


L. Give parents the freedom to express negative ideas without being judged. Fear and frustration over the inability to control their infant’s circumstances are often the basis for parental anger displaced to staff. Remember that control is not acceptable in all cultures, so it is important to ask what is making them uncomfortable. In addition, a positive way to approach this and possibly decrease their anger is to ask them what would help them to feel more comfortable.


M. Encourage parents to participate in the care as they desire. Parents need to understand and develop their roles as parents. If professionals provide all the care, a clear message is conveyed to the parents that they are not capable of helping their infant. They must understand all the things they have to contribute to the team approach to care. The role of parents at an NICU has been changed (Thomas, 2008), and now parents are a part of the health care team and as such should have a say in health care decisions. Dr. Bernadette Melnyk’s COPE Program—Creating Opportunities for Parent Empowerment—has decreased stress, shortened length of stay, and increased coping by involving parents in their infant’s care (Melnyk and Feinstein, 2009; Melnyk et al., 2004, 2006, 2008). Taking part in their infant’s care helps parents to ease the crisis, decrease guilt and grief, increase parental attachment to a baby, and increase psychological well-being of parents. Examples are kangaroo care (skin-to-skin contact, done by placing the naked infant next to the parent’s naked chest, with a blanket or gown draped over the parent and infant), calming care and comfort care for the infant, and feeding (Bigelow et al., 2012; Neu and Robinson, 2010; Skene et al., 2012; Welch et al. for the Family Nurture Intervention [FTI] Trial Group, 2012).


N. Do not refer to parents as visitors. Parents are not visitors. They are parents and are partners in the care of the infant. They are an integral part of the infant’s care and should be a focus of nursing care. Parents as partners is a concept that is growing as part of the patient safety movement from the Institute of Medicine toward patient-focused and family-centered care. Many hospitals are creating Family Advisory Councils (FACs) that are either unit or hospital based (Sullivan and Altimier, 2007). These councils are composed of parents of former patients and representatives from many disciplines, which may include clergy and administration. The FACs guide the administration by giving input into policies that support family voices (Halm et al., 2006).


O. Promote a developmentally supportive environment for the family. Use of individualized family-centered care is important if the family is to be helped through this crisis (Kenner and McGrath, 2010). For example, kangaroo care, dimmed lights or cycled lights, private areas for parent interaction with the infant, and swaddling or cuddling of the infant promote positive development of the infant and family (McGrath, 2014).


P. Determine parents’ network of social support. The social support network may include family, friends, clergy, and health professionals. Also determine whether the level of support is adequate from the parents’ and the health professionals’ standpoint. When possible, use new technologies such as mypatientline (www.mypatientline.com; by Jaduka, Dallas, TX), which allows the family a toll-free service with voice mail and connects the family to friends and other family members even at a distance. Online and telephone-based peer support and parent support groups are other examples of strategic interventions for NICU parents who require increased levels of social support (Ardal et al., 2011; Dennis et al., 2009; Lindberg et al., 2009; Liu et al., 2011; Preyde and Ardal, 2003).


Q. Encourage parents to share their concerns and fears with each other. Often it is not until the infant is discharged that parents share their feelings with each other. This is another area where culture plays a role. In some Asian cultures, expressions of concern are acceptable within the family unit but not with others. Health professionals may be viewed as authority figures and not ones to whom fears should be confided. It is important too to find out what this illness and hospitalization means to the family and to what degree they are viewed as stress (Howland, 2007).


R. Assist parents in maintaining their relationship with one another. Reinforce with them that they must take time for themselves as a couple. If the mother is alone, encourage her to maintain ties with other family members and her friends.


S. Assist parents in maintaining their relationship with the infant’s siblings by helping them recognize the needs of the other children and identify how the needs can be met. Use resources such as coloring and activity books to help the siblings express their feelings.


T. Assist the adolescent parents in defining their role with their own parents by helping them learn how to talk with their parents.


U. Encourage parents to attend a parent support group if desirable. Involvement in a parent support group has been demonstrated to facilitate parental grieving, reduce fears, and increase feelings of parental competence. This intervention must be culture specific. In some cultures it is not acceptable to discuss family problems openly. It is also important to include the father’s perspective. Some groups are for fathers only because this is a recognized growing need.


V. Assist families of dying infants to tell you what they need. EOL issues are never easy but are especially difficult in this population when celebration of a birth is the expectation. Asking the family what they need from us as health care professionals is important. Understanding what this death means to them is critical to plan individualized care. Finding out if they want siblings and extended family involved, and if clergy or spiritual healers are important, as well as what for them constitutes a good death are all important aspects of helping families cope (Kenner, 2014). Use of consistent information and the same message from all health care providers is important too. The use of a palliative care protocol is one method to ensure more consistency (Catlin, 2005; Catlin and Carter, 2002). Consideration of cultural differences once again is important (McGrath, 2014).


Evaluation of Maternal Parenting Outcomes


A. Predictors of good maternal parenting outcomes (Kenner et al., 2014).


1. Anxiety level is moderate to high: she worries about the infant’s chances of surviving, the possibility of abnormality, and her competence as a mother.


2. Seeks information about the infant.


3. Demonstrates warmth toward infant and in other relationships.


4. Has a support system (i.e., father of the infant, her mother, friends).


5. Has had a previous successful experience with a premature infant (i.e., previous child, a sibling, other relative), which enables her to feel more experienced and confident.


6. Recognizes positive attributes of the child (i.e., smiling).


7. Views self positively.


8. For an adolescent, has a centralized locus of behavioral control.


9. Exhibits effective caregiving.


10. Makes positive eye contact with the infant.


B. Predictors of poor maternal parenting outcomes (Kenner et al., 2014).


1. Exhibits an inappropriately low anxiety level.


2. Demonstrates passivity—does not actively seek out information related to infant’s condition.


3. Has limited verbal interaction.


4. Visits infrequently and for short periods in the NICU. (Remember that sometimes infrequent visits are due to a lack of transportation and not self-determined parenting problems.)


5. Is unaware of the infant’s needs.


6. Has unrealistic expectations of the infant or the parenting role.


7. Personalizes the infant’s behavior as a failure of her ability to parent or characterizes infant’s behavior as “bad.”


8. During pregnancy, expressed little desire to have a child.


9. Is more likely to express disappointment about the sex of the infant.


10. Has no support system.


11. Is an adolescent with little or no social supports.


12. Exhibits role confusion.


GRIEF AND LOSS


Interventions for Facilitating Grief Resolution


A. Listen. Parents need to be given the opportunity to express their feelings.


B. Acknowledge the pain of their loss. This gives the parents permission to talk about their loss and provides support for acknowledging and working through their grief.


C. Convey an attitude of acceptance, openness, and availability to the family. Grieving people need permission to experience their feelings, regardless of how uncomfortable or unpleasant.


D. Help the parents understand the individuality of the grieving process. Mothers and fathers usually have “incongruent grieving”: they do not grieve at the same pace. This incongruence frequently leads to marital discord because of misconceptions about feelings and an inability to communicate.


Interventions for Parents Experiencing a Perinatal Loss


A. Encourage the family to see, hold, and spend time with the infant before and after death (Catlin and Carter, 2002; Kenner, 2014).


1. Be sensitive to individual and cultural differences in rituals of saying goodbye.


2. Physically bring the family together and offer privacy. Some hospitals have a neonatal hospice program in which the family is involved with the infant’s care (Catlin and Carter, 2002; Kenner, 2014).


B. Provide the parents with the following mementos if culturally acceptable: photograph of the infant, identification bracelet, footprints, completed crib card, blanket, wisp of hair, and birth certificate. Keep these mementos in a file in the nursery for future retrieval should parents choose not to take the items at the time of the infant’s death. This intervention must be individualized according to the needs and desires of each family (Catlin and Carter, 2002; Kenner, 2014). This is a very culturally sensitive topic and must be explored with the family.


C. Provide information about support groups and/or grief counseling. Consideration for individual family wishes is important. Not all families want or would benefit from support groups. Family follow-up, even if just a phone call from an NICU nurse or hospice nurse a few weeks after the loss, is very helpful to many families.


D. Encourage the parents to name the infant. This task is very important for many parents.


E. Provide a booklet about perinatal loss for the parents and siblings. Pediatric hospice and palliative care programs have a number of resources for parents and the left-behind siblings. There are many books and videos that are age appropriate. A good resource is Children’s Hospice International at www.chionline.org or 1101 King Street, Suite 360, Alexandria, VA 22314; phone: 800-2-4-CHILD.


F. Discuss options for autopsy, disposition of the body, and a memorial or funeral service. It is important to ask parents what they need and what they would like. Some parents wish to be an active participant in the plans; other families want these arrangements to be done for them. Rituals surrounding death are culturally driven; for example, the taking of pictures after death is not acceptable to Native Americans, Eskimos, Amish, Russians, Hindus, and Muslims. It is the family’s choice (Kenner, 2014).


G. Offer the option for the infant to be baptized. This option is not acceptable in all cultures.


H. Assist parents in understanding the importance of informing siblings about the death of the infant. Suggest that they use simple statements based on the children’s level of understanding. Many times the siblings take the death much better than adults expect. Allowing them to see the infant after death may make the infant real to them. Of course, parental wishes are always to be the guiding principle for how the siblings are informed of the death and what part they play in the rituals following the death. Again, this is a culturally sensitive issue and beliefs must be explored with the family.


I. Talk with parents about possible responses from family and friends, who often minimize the infant’s death in an attempt to offer comfort. Encourage them to delegate or give tasks to those who call them. If they need the laundry done or groceries bought, then these are simple tasks that can be delegated to others who truly want to help and do not know what to do. More information on EOL issues can be obtained through the joint project of the American Association of Colleges of Nursing (AACN) and the City of Hope (COH) End-of-Life Nursing Education Consortium (ELNEC) found at www.aacn.nche.edu/ELNEC/index.htm. A pediatric-specific program is available.


Interventions for Parents With a Preterm or Physically, Developmentally, or Psychologically Challenged Infant


These interventions have been incorporated into the interventions listed in the previous section (The Family in Crisis) and in the next section (Family–Infant Bonding).


Family–Infant Bonding


Parents who have an infant who is born ill, prematurely, or physically or psychologically challenged are at risk of having parenting difficulties. These stressful events around the time of the infant’s birth generate feelings of anxiety, disappointment, and grief in the parents. Moreover, early disruptions in the acquaintance and attachment process between parent and infant place these parents in a state of increased vulnerability for establishing a nurturing relationship with their infant. Opportunities for parents to learn to interpret their infant’s unique needs and to develop reciprocal interaction through sensitivity to behavioral cues are also interrupted (Kenner et al., 2014). The relationship between parent–infant attachment and later parenting behaviors has been well established (Borghini et al., 2006; Fegran et al., 2008; Korja et al., 2009; Meijssen et al., 2011b). In addition, the parent–infant attachment is the basis for all the infant’s subsequent attachments and is the relationship through which a sense of self is developed. Therefore, an important component of nursing care of the high-risk infant is facilitation of parent–infant interaction and attachment.


A. Definitions.


1. Bonding: a gradual, reciprocal process that begins with acquaintance. It is a unique and specific relationship between two people and endures across time. Bonding occurs on a different timetable for mothers than for fathers. Although mothers experience a sharp increase in bonding around the fifth month of pregnancy and have intensifying feelings throughout the pregnancy, the father’s feelings usually tend to develop more slowly than the mother’s and become congruent after birth, when infant caregiving begins (McGrath, 2014).


2. Attachment: the quality of the bond, or affectional tie, between parents and their infant, which begins early in the prenatal period, appears to increase when fetal movement is felt and is intensified with interaction between the parent and the infant after birth.


B. Discussion. The development of a warm, nurturing, and reciprocal relationship between infant and parent is essential for a healthy psychological outcome to the crisis of the birth of a premature, sick, or malformed infant (Kenner et al., 2014). “The parent ‘at risk’ cannot resolve a crisis surrounding birth of their infant and simultaneously establish warm attachment bonds while retaining his or her self-esteem without the support of others in the social system” (Mercer, 1977, p. 5). Neonatal nurses can provide this support by assessing the parents’ responses to their infant and facilitating their acquaintance and attachment process with the infant.


C. Assessment.


1. Note pattern of parental visiting to the NICU, duration of visits, and frequency of phone calls. This pattern, if abnormal, is predictive of maternal parenting difficulties. If parents are not visiting frequently, be careful to determine the reasons (i.e., cultural practices after childbirth, conflicting obligations between work and family roles, or lack of transportation to the hospital) before assuming that the parents are unconcerned or that parenting difficulties exist.


2. Identify the development of attachment behaviors. Mothers’ activity with their infants has been found to be indicative of the initial adjustment to the infant, important past and present interpersonal relationships, and involvement in taking care of the infant. Examples of attachment behaviors include the following:


a. Touching: typical maternal progression of touching the premature infant is from fingertip touching of the infant’s extremities to palmar stroking of the infant’s trunk, to holding and embracing the infant. This progression of touch usually occurs during a period of several visits to the NICU.


b. Looking en face: aligning head with infant’s head in the same plane to make eye-to-eye contact with the infant.


c. Talking to the infant, calling the infant by name.


d. Bringing pictures, toys, and/or clothes to the hospital.


e. Participating in caregiving activities, such as feeding, bathing, and clothing the infant.


Interventions to Encourage Family–Infant Bonding


A. If at all possible, show the infant to the parents in the delivery room and allow them to touch the infant, if only for a few moments. This helps to establish the reality of the infant for the parents (Kenner et al., 2014).


B. Encourage the parents to visit their infant in the intensive care nursery as soon as possible.


1. Before the first visit to the nursery, prepare the parents for what to expect by giving them written information about the unit, describing the atmosphere of the nursery (i.e., noise, high activity level, infants attached to various kinds of equipment) and discussing the normal aspects of their infant as well as deviations.


2. If the mother is unable to visit because of conditions such as ordered bed rest or transport of the infant to another hospital, the father can be given pictures of the infant for the mother. In addition, the mother should be given the phone number of the nursery and encouraged to call as often as desired.


3. For the parents of an infant born with a malformation, encourage the parents to see the infant together as soon as possible, but do not force them to interact. Point out to the family the normal qualities of the infant as well as the abnormalities (Kenner et al., 2014).


C. Ensure that, during the family’s first visit, the nurse assigned to the infant stays at the bedside to explain equipment and the infant’s condition, as well as to answer questions, provide emotional support, and encourage touching of the infant.


D. Convey a positive, realistic attitude about the infant rather than a negative or fatalistic viewpoint, which may alienate the parents and impair attachment (Kenner et al., 2014).


E. Assist the parents with holding and cuddling their infant as soon as possible, taking into consideration the infant’s condition and the parents’ readiness (e.g., assist in managing respiratory and monitoring equipment and intravenous lines). Some nurseries are implementing skin-to-skin care (kangaroo care) by parents as an alternative to the traditional modes of providing care to stable, hospitalized premature infants. This care consists of positioning the infant, dressed only in diapers, upright and prone between the mother’s breasts. This vertical position in skin-to-skin contact provides tactile stimulation and warmth from the mother, as well as opportunities for eye-to-eye contact, auditory stimulation, and breastfeeding. Mothers usually wear their own front-opening blouses or dresses that are loosely fitted. Fathers can also be encouraged to engage in kangaroo care.


F. Encourage the parents to participate in caregiving activities as warranted by the infant’s condition and tolerance for input. Explain to parents of very premature infants the relationship between neurologic maturity and the capacity for handling stimulation (Holditch-Davis and Blackburn, 2014).


G. Model nurturing parenting behavior such as stroking, touching, and talking to the infant for parents who may need assistance in developing positive parenting behaviors (Welch et al. for the Family Nurture Intervention [FTI] Trial Group, 2012).


H. Give positive reinforcement to parents as they interact with their infant. For example, say that “He seems to calm down when you talk with him,” or “She really seems to sleep better after you have held her” (Kenner and McGrath, 2010). Assisting parents to recognize positive changes in the infant in response to their caregiving has a strong impact on the parents and increases their feelings of success.


I. Use consistent caregivers for the premature or sick infant to establish a rapport with the parents.


J. Role-model caregiving techniques—one on one, if possible, especially for adolescent parents.


K. Avoid power struggles with parents by defining their role and recognizing that they are the parents and that the infant is theirs, not the staff’s.


L. Suggest that the parents or siblings bring something for the infant, such as a small toy, pictures of the family members to be taped on the infant’s bed, and/or a tape recording of the parents’ voices to be played for the infant. Share personalized information about the infant with the parents. This information can include statements such as “She really enjoys sucking on her pacifier” or “He was really active while I was giving him a bath,” to assist the parents in individualizing and accepting the infant.


M. Encourage sibling visitation in the unit or window observation of the infant.


N. Promote individualized, family-centered developmental care that includes the family unit in the plan of care and an environment that supports the parents. Provide a private area, or a transitional care area, to encourage parental stays within a more homelike environment, and encourage developmental care that includes parents as an integral part of the health care team (Kenner and McGrath, 2010).


O. After the mother’s discharge from the hospital, maintain communication with the parents by providing them with the phone number of the unit. For parents of transported infants, sending pictures and cards from their infant to show current status, arranging for transportation assistance through social service agencies for parents who lack means of travel, and maintaining frequent phone contact with parents can be helpful in promoting parent–infant attachment.


P. Give the mother the opportunity to provide breast milk for the infant should she so desire, and support her in this endeavor. However, be careful not to overemphasize the importance of breastfeeding. The rationale is that, if she should be unsuccessful or decide to stop breastfeeding, feelings of guilt or disappointment may occur if breastfeeding has been touted as the ideal infant feeding method.


Q. Identify situations in which there are difficulties in parent–infant interaction or problems in the family’s functioning.


R. Be sensitive to cultural practices that may influence parent–infant behaviors while bonding and attachment remain strong.


S. Identify infants who are at risk of having developmental difficulties (Kenner and McGrath, 2010).


T. Identify the unique needs of the parent with lower socioeconomic status. This parent may want to provide the best possible care to the infant but either may not know how to do so (poor role models) or may not have the means to provide for the infant’s perceived needs.


U. Assess the cultural needs of minority parents. This means to be culturally sensitive to what the parenting role means in that culture and then gear the interventions toward these cultural values and beliefs.


Evaluation of Parent–Infant Bonding


Evaluation of parental behaviors should be based on ongoing patterns rather than on isolated incidents (Mercer, 1977).


A. Positive attachment behaviors. The parent:


1. Visits frequently.


2. Has named the infant.


3. Makes positive comments when talking to or about the infant.


4. Demonstrates increasing skill in holding the infant.


5. Displays increasing eye and body contact between parent and infant (i.e., kissing, fondling, stroking, nuzzling).


B. Behaviors of concern. The parent:


1. Is overly optimistic.


2. Appears unconcerned about the infant’s condition.


3. Does not ask questions.


4. Is passive or indifferent.


5. Avoids close body contact by holding the infant at a distance, props the bottle whether or not the infant is held, positions the bottle in such a way that milk is unable to flow from the nipple.


6. Is unable to describe any physical or behavioral features unique to the infant.


7. Attributes inappropriate characteristics to the infant, such as “she’s lazy and stubborn just like her father.”


C. Make sure these areas of concern are considered within the context of the culture of the parents. Different cultures approach parenthood and parent–infant interaction in different ways.


SUMMARY OF PARENTAL NEEDS TO BE MET BY NICU STAFF


A. Help the mother reconceptualize her image of an “ideal” infant to the image of her premature, acutely ill, or malformed infant.


B. Help the mother deal with feelings of guilt.


C. Help parents develop affectionate ties with the infant through the infant’s features (e.g., soft eyes; pretty, soft skin) and learn to read the infant’s behavioral cues.


D. Assist parents in gaining confidence in holding the infant by encouraging them to participate in caregiving tasks.


E. Promote communication between the parents and, if they desire, extended family members.


F. Be sensitive to the unique needs of the individual families.


G. Assist families in preparing for the transition to home care after discharge (Kenner et al., 2014; Smith et al., 2012).


H. Provide support for parents during the transition phase after discharge of their infant from the NICU (Boykova and Kenner, 2012; Hutchinson et al., 2012; Kenner et al., 2014; Lopez et al., 2012).


I. Assist parents in dealing with neonatal death in a personally meaningful way.


J. Assist parents in describing their cultural values and beliefs, if applicable, to understand their views of the infant and their role as parents.



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Oct 29, 2016 | Posted by in NURSING | Comments Off on 17: Families in Crisis

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