Chronic Illness, Disability, or End-of-Life Care for the Child and Family

Developmental Focus

Focusing on the child’s developmental level rather than chronologic age or diagnosis emphasizes the child’s abilities and strengths rather than disabilities. Attention is directed to normalizing experiences, adapting the environment, and promoting coping skills. Nurses often are in vital positions to redirect attention from the pathologic model with its focus on weaknesses and problems to the developmental model to meet the unique needs of the child and family.

A developmental focus also considers family development. The life cycle of the family unit reflects changing ages and needs of family members, as well as changing external demands. A family member’s serious illness or disability can cause significant stress or crisis at any stage of the family life cycle. Just as with individual development, family development may be interrupted or even regress to an earlier level of functioning. Nurses can use the concept of family development to plan meaningful interventions and evaluate care (see Developmental Theory, Chapter 3).

Family-Centered Care

Children’s physical and emotional health, as well as cognitive and social functioning, is strongly influenced by how well their families function (Schor, 2003). The importance of family-centered care—a philosophy that considers the family as the constant in the child’s life—is especially evident in the care of children with special needs (see also Family-Centered Care, Chapter 1). As parents learn about the youngster’s health care needs, they often become experts in delivering care. Health care providers, including nurses, are adjuncts to the child’s care and need to form partnerships with parents. Effective communication and negotiation between parents and nurses are essential to forming trusting and effective partnerships and finding the best ways to meet the needs of the child and family (Corlett and Twycross, 2006). Collaborative relationships are characterized by communication, dialogue, active listening, awareness, and acceptance of differences (Schor, 2003).

Family–Health Care Provider Communication

The disclosure of a serious acute or chronic illness of a child is one of the most stressful aspects of communication between families and health care professionals. Often, parents have suspected for some time that something is wrong with their child and believe that their concerns were minimized or ignored by health care professionals (Whitehead and Gosling, 2003; Thomlinson, 2002; Cohen, 1995). After a diagnosis is made, numerous studies have shown that parents are not always satisfied with the way in which information is given. Factors that influence parent dissatisfaction with communication include unsympathetic and brief diagnostic interviews, lack of privacy during diagnostic discussions, and lack of opportunity to ask questions. Conversely, parents report satisfaction when they perceive the health care providers giving information in an open and honest manner with respect for the parents’ need for privacy and time to express emotions and ask questions (Davies, Davis, and Seibert, 2003). Similar factors are important in communication of changes in the child’s condition throughout the course of the illness.

Providing information to families with a chronically ill child should be a process of repeated discussions to allow the family to process the information and their reactions to that information, and allow them to ask for clarification and further information. Nurses play an important role in ensuring that families’ needs are met during discussions related to the child’s diagnosis, condition, and treatment. This requires assessment regarding how much information the family is comfortable with, what they understand of the information already given to them, and how they are coping with the information both cognitively and emotionally. Nurses should ensure that the appropriate health care professionals address any concerns or further questions that families may have.

Establishing Therapeutic Relationships

Another important aspect of family-centered care of chronically ill children is establishing a therapeutic relationship with the child and family, which has been shown to predict improved health-related outcomes (Denboba, McPherson, Kenney, and others, 2006). Families, most often the mother, take on enormous responsibility in providing technical care and symptom management of their child’s condition outside the health care institution (O’Brien and Wegner, 2002; Raina, O’Donnell, Rosenbaum, and others, 2005; Swallow and Jacoby, 2001). To build successful therapeutic relationships with families, it is necessary for nurses to recognize parents’ expertise with regard to their child’s condition and needs. Care conferences, especially multidisciplinary meetings that include the family and key health professionals, provide an opportunity for sharing ideas and expressing feelings or concerns.

Individual discussions, especially with the case manager, primary nurse, clinical nurse specialist, or nurse practitioner, help establish a consistent and flexible care plan that can prevent conflicts or deal with these conflicts before they disrupt care. In family-centered care, the goal is to maintain the integrity of the leadership role and support the family during times of crisis or stress.

The Role of Culture in Family-Centered Care

Issues of culture, ethnicity, and race affect access to services, utilization, and follow-through with referrals and recommendations (van Dyck, Kogan, McPherson, and others, 2004; Wise, Wampler, Chavkin, and others, 2002; Wood, Smith, Romero, and others, 2002; Zuvekas and Taliaferro, 2003). For some ethnic and minority populations, cultural understandings of illness and disability, the structure of family life, social roles for individuals who are disabled, and other factors related to the perception of children may differ from those of mainstream American culture. These factors may affect family needs and family choices regarding the care of their child with special needs.

Although culture cannot completely explain how an individual will think and act, understanding cultural perspectives can help the nurse anticipate and understand why families may make certain decisions. Cultural attributes such as values and beliefs regarding illness or disability and its causation, social roles for the ill or disabled, family structure, the role of children, childrearing practices, self vs group orientation, spirituality, and time orientation also affect a family’s response to illness or disability in a child (Carnevale, Alexander, Davis, and others, 2006; Carter, 2002; Marshall, Olsen, Mandleco, and others, 2003; Rehm, 1999; Sterling and Peterson, 2003).

When parents are informed of their child’s chronic illness, interpreters familiar with both culture and language should be used. Children, family members, and friends of the family should not be used as translators because their presence may prevent parents from openly discussing the issues. When working with people of cultural backgrounds different from their own, nurses must listen carefully with an initial goal of understanding and articulating the family’s perspective. The ability to interpret the mainstream medical culture to the family is also important. Furthermore, every effort is made to incorporate traditional cultural beliefs of a family into treatment plans. Developing a care plan in conjunction with the family, considering their preferences and priorities, is an important first step in formulating a plan that best meets the family’s needs, no matter what their cultural background (Ahmann, 1994; Ochieng, 2003).

Shared Decision Making

Shared decision making among the child, family, and health care team can result from open, honest, culturally sensitive communication and the establishment of a therapeutic relationship between the family and health care providers. In a shared decision-making model the health care professionals provide honest, clear information regarding diagnosis, prognosis, treatment options, and risk/benefit assessment. The patient and/or family then shares information with the health care team regarding important family values, acceptable levels of discomfort or inconvenience, and the ability to comply with treatments being recommended (Charles, Gafni, and Whelan, 1997). This process allows them to discuss all options in terms of the risks and benefits to the child and family, the prognosis or expected course of the illness, and the impact on the family’s resources (Box 18-2).

Normalization

Normalization refers to behaviors and intentions of the disabled to integrate into society by living life as persons without a disability would (Morse, Wilson, and Penrod, 2000). For the chronically ill or disabled child, such behaviors could include attending school, pursuing hobbies and recreational interests, and achieving employment and a level of independence. For their families, it may entail adapting the family routine to accommodate the ill or disabled child’s health and physical needs (McDougal, 2002).

Children with chronic illness and disability and their families face numerous challenges in achieving normalization. Families move between the “normal” of living with the experience of chronic childhood illness and the “normal” of the healthy outside world; they often redefine “normal” based on their particular experiences, needs, and circumstances (Nelson, 2002; Deatrick, Knafl, and Murphy-Moore, 1999).

Nurses can assist families in normalizing their lives by assessing the family’s everyday life, social support systems, coping strategies, family cohesiveness, and family and community resources. Interventions could include encouraging families to reduce stress through delegation of care and family tasks, identifying ways to incorporate care into current routines, structuring the home environment to encourage the child’s engagement in age-appropriate activities, and ensuring families have access to appropriate community support services (Jokinen, 2004; Shepard and Mahon, 2000). Being supportive of the child’s illness and treatment and actively including the family in all aspects of care will improve their self-esteem and promote further development (Shepard and Mahon, 2000).

Home care represents the return to a system and set of priorities in which family values are as important in the care of a child with a chronic health problem as they are in the care of other children. Home care seeks to achieve goals that are consistent with the developmental model (Stein, 1985):

With appropriate training and support, families provide complex procedures and treatments in the home. Parents are challenged to retain a homelike setting among monitors, ventilators, and other sophisticated equipment. Throughout the text, home care is discussed as appropriate for specific conditions. The process of transition from hospital to home is elaborated on in Chapters 20 and 21.

Paralleling normalization and home care is the process of mainstreaming, or integrating children with special needs into regular classrooms. Just as the home is the natural environment for children, so school must also be included as an essential component of the children’s overall physical, intellectual, and social development. Children who attend school have the advantages of learning and socializing with a wide group of peers. There is an increased focus on individualization as plans are made to meet the academic needs of these children along with those of the rest of the students.

A variety of supplemental programs have been designed in the school system to accommodate special needs, both at school age and younger, through early intervention, which consists of any sustained and systematic effort to assist children from birth to age 3 years who are disabled and developmentally vulnerable. This change and increasing opportunities for normalization for children with special needs in large part have resulted from the passage of (1) the Education for All Handicapped Children Act of 1975 (Public Law 94-142) and its 1990 amendments (Public Law 101-476), which changed the name of the act to the Individuals with Disabilities Education Act (IDEA); (2) the Education of the Handicapped Act Amendments of 1986 (Public Law 99-457), which directs states to develop and implement statewide comprehensive, coordinated, multidisciplinary interagency programs of early intervention services for infants and toddlers with disabilities, as well as support services for their families; and (4) the Americans with Disabilities Act of 1990. Nurses can provide parents with information about these laws and in some cases may participate in the development of individualized educational programs (IEPs) or individualized family service plans (IFSPs) for children with special needs.

Managed Care

Managed care programs have become the major form of health care provision in the United States (Jackson, 2000). The transition to this model of care presents both opportunities and challenges with respect to the care of children with special health care needs. Managed care may promote continuity and coordination of care. Children rely on adults for access to health care and follow-up with treatment regimens, making it necessary to manage the child’s care in the context of the family (McPherson, Weissman, Strickland, and others, 2004; van Dyck, Kogan, McPherson, and others, 2004).

Parents

In addition to the stress of grieving for the loss of a perfect child, parents are affected by whether or not they receive positive feedback from transactions with their child. Many parents feel satisfaction and fulfillment from the parenting role. For others, parenting may be a series of unrewarding experiences that contribute to feelings of inadequacy and failure (Box 18-4). These responses may be most evident in parents who are responsible for the child’s care. For example, parents may become preoccupied with their ability to carry out certain procedures, overlooking the child’s personal comfort and satisfaction or failing to offer praise for anything less than perfect cooperation or performance. They may pursue a frustrating activity until they achieve “success”–long after the child has become irritable and uncooperative. As a result, parents can become caught in a pattern of interaction that is mutually unrewarding and minimally productive. For these parents, several strategies may be helpful: education regarding what can reasonably be expected of their child, assistance in identifying the child’s strengths, praise for a parental job well done, and respite care so that parents can renew their energies.

Siblings

Results of studies on how siblings, almost exclusively European Americans, are affected by having a brother or sister with special needs are unclear (Barlow and Ellard, 2006). Generally, there is evidence that there is a negative effect on siblings of children with a chronic illness when compared with siblings of healthy children. This effect appears, however, to be decreasing in significance in recent years—most likely because of changes in public attitudes toward the ill and disabled (Sharpe and Rossiter, 2002). Siblings of children with chronic illness or disability report depression and anxiety more often than their peers (Rossiter and Sharpe, 2001). However, most investigators do agree that brothers and sisters of children with special needs are no more at risk for severe psychiatric problems than are siblings of children without chronic or disabling conditions. A number of factors increase the risk of negative effects for siblings of ill children. Responsibility for caregiving, differential treatment by parents, and limitations in family resources and recreational time are often the experience of siblings of ill or disabled children (Lobato and Kao, 2002) (Box 18-5).

An important factor in sibling adjustment and coping is information and knowledge regarding their brother’s or sister’s illness or disability. What siblings piece together or overhear is often much worse than the truth. Often they imagine gruesome things regarding the experiences related to the illness, treatment, and hospitalization (Shepard and Mahon, 2000). Latino siblings have reported less accurate information about their sibling’s condition than non-Latino siblings (Lobato, Kao, and Plante, 2005). Parents are usually in the best position to impart information, although they are often overwhelmed with the medical crisis at hand (Fleitas, 2000). Nurses can encourage parents to talk with the siblings about how they perceive their sick brother or sister and to be accepting of the siblings’ feelings. Nurses can be ideal educators and counselors of siblings during the course of their brother’s or sister’s illness (Shepard and Mahon, 2000).

Concurrent Stresses Within the Family

The ability to deal with the overwhelming stress of a lifelong disability or illness is challenged further when additional stresses are present. Stressors may be situational or developmental. They may be related to marital difficulties, sibling needs, homelessness, or social isolation. Some families may simultaneously be struggling with a family member’s alcohol or other drug problem. Even relatively minor stressors, such as arranging care for siblings, managing the home, and traveling to distant treatment centers, can challenge a family’s ability to cope successfully.

Most families, regardless of their income or insurance coverage, have financial concerns. The costs of caring for a child with special needs can be overwhelming. Nurses and social workers can help a family review various options for financial assistance, including insurance, managed care, or health maintenance organization policies; Medicaid; Supplemental Security Income; Women, Infants, and Children program (WIC); the state Program for Children with Special Health Needs; disease-related associations; and local philanthropic organizations.

Coping Mechanisms

Coping mechanisms are behaviors aimed at reducing the tension caused by a crisis. Approach behaviors are coping mechanisms that result in movement toward adjustment and resolution of the crisis. Avoidance behaviors result in movement away from adjustment and represent maladaptation to the crisis. Several approach and avoidance behaviors used in coping with a chronic illness or disability are listed in the Nursing Care Guidelines box. None of the indexes can be used singly to assess the possible success or failure in resolving the crisis. Each behavior must be viewed in the context of all of the variables affecting the family. For example, the observation of several avoidance behaviors in an emotionally healthy family may denote significantly less risk to the successful resolution of the crisis than an equal number of avoidance behaviors in an individual who has few available supports.

Parental Empowerment

Empowerment can be seen as a process of recognizing, promoting, and enhancing competence. For parents of children with chronic conditions, empowerment may occur gradually as strength and capabilities are drawn on to master the child’s care, manage family life, and plan for the future. Advocating for the child and developing parent-professional partnerships are part of taking charge (Ray, 2002).

Shock and Denial

The initial diagnosis of a chronic illness or disability is often met with intense emotion and is characterized by shock, disbelief, and sometimes denial, especially if the disorder is not obvious, as in chronic illness. Denial as a defense mechanism is a necessary cushion to prevent disintegration and is a normal response to grieving for any type of loss. Probably all family members experience various degrees of adaptive denial as they learn of the impact that the diagnosis has on their lives.

Shock and denial can last from days to months, sometimes even longer. Examples of denial that may be exhibited at the time of diagnosis include:

Generally, these mechanisms should be respected as short-term responses that allow individuals to distance themselves from the tremendous emotional impact and to collect and mobilize their energies toward goal-directed, problem-solving behaviors.

In children, the importance of denial has repeatedly been demonstrated as a factor in their positive coping with the diagnosis. Denial allows the child to maintain hope in the face of overwhelming odds and to function adaptively and productively. Like hope, denial may be an adaptive mechanism for dealing with loss that persists until a family or patient is ready or needs other responses.

Denial is probably the least understood and most poorly dealt-with reaction. Health professionals typically label denial as maladaptive and act inappropriately by attempting to strip it away by repeated and sometimes blunt explanations of the prognosis. However, denial becomes maladaptive only when it prevents recognition of treatment or rehabilitative goals necessary for the child’s optimal survival or development.

Adjustment

For most families, adjustment gradually follows shock and is usually characterized by an open admission that the condition exists. This stage may be accompanied by several responses, which are normal parts of the adaptation process. Probably the most universal of these feelings are guilt and self-accusation. Guilt is often greatest when the cause of the disorder is directly traceable to the parent, as in genetic diseases or accidental injury. However, it can occur even without any scientific or realistic basis for parental responsibility. Frequently the guilt stems from a false assumption that the disability is a result of personal failure or wrongdoing, such as not doing something correctly during pregnancy or the birth. Guilt may also be associated with cultural or religious beliefs. Some parents are convinced that they are being punished for some previous misdeed. Others may see the disorder as a trial sent by God to test their religious strength and faith. With correct information, support, and time, most parents master guilt and self-accusation. The ability to master resentful and self-accusatory feelings of having “caused” the child’s disorder is a crucial factor in determining the parents’ acceptance of their child.

Children, too, may interpret their serious illness as retribution for past misbehavior. The nurse should be particularly sensitive to the child who passively accepts all painful procedures. This child may believe that such acts are inflicted as deserved punishment. It is vital that parents and health care professionals reassure children that their illness is not their fault.

Other common and normal reactions to a diagnosis are bitterness and anger. Anger directed inward may be evident as self-reproaching or punitive behavior, such as neglecting one’s health and verbally degrading oneself. Anger directed outward may be manifested in either open arguments or withdrawal from communication and may be evident in the person’s relationship with any number of individuals, such as the spouse, the child, and siblings. Passive anger toward the ill child may be evident in decreased visiting, refusal to believe how sick the child is, or inability to provide comfort. Among the most common targets for parental anger are members of the staff. Parents may complain about the nursing care, the insufficient time physicians spend with them, or the lack of skill of those who draw blood or start intravenous infusions.

Children are apt to respond with anger as well, and this includes the affected child and the well siblings. Children are aware of the loss engendered by their illness or disability and may react angrily to the restrictions imposed or the feelings of being different. Siblings may also feel anger and resentment toward the ill child and parents for the loss of routine and parental attention. It is difficult for older children and almost impossible for younger children to comprehend the plight of the affected child. Their perception is of a brother or sister who has the undivided attention of their parents, is showered with cards and gifts, and is the focus of everyone’s concern.

During the period of adjustment, four types of parental reactions to the child influence the child’s eventual response to the disorder:

Reintegration and Acknowledgment

For many families the adjustment process culminates in the development of realistic expectations for the child and reintegration of family life with the illness or disability in a manageable perspective. Because a large portion of this phase is one of grief for a loss, total resolution is not possible until the child dies or leaves home as an independent adult. Therefore one can regard adjustment as “increased comfort” with everyday living rather than a complete resolution.

This adjustment phase also involves social reintegration in which the family broadens its activities to include relationships outside of the home, with the child as an acceptable and participating member of the group. This last criterion often differentiates the reaction of gradual acceptance during the adjustment period from total acceptance, or perhaps is more descriptive of the acknowledgment process.

Many parents of children with chronic illnesses experience chronic sorrow, feelings of sorrow and loss that recur in waves over time. As the child’s condition progresses, parents experience repeated losses that represent further declines and new caregiving demands. Consequently, families must be assessed on an ongoing basis and offered appropriate support and resources as their needs change over time (Gravelle, 1997).

Hopefulness

Children, particularly adolescents, are sensitive to the presence or absence of hope. Hopefulness is an internal quality that mobilizes humans into goal-directed action that may be satisfying and life sustaining. A sense of hopefulness can produce increased participation in health-seeking behaviors and an improved sense of well-being (Ritchie, 2001).

Health Education and Self-Care

Health education is an intervention that promotes coping. Children need information about their condition, the therapeutic plan, and how the disease or the therapy might affect their particular situation. Children nearing puberty also need to understand the maturation process and how their disability may alter this event. For example, a youngster with Crohn disease should understand that this disorder is associated with growth failure and delayed puberty; a child with diabetes needs to know that hormonal changes and increased growth needs will alter food and insulin requirements at this time; and a sexually active girl with sickle cell anemia or systemic lupus erythematosus needs to be aware of the risks of pregnancy. The information should not be given all at once but should be timed appropriately to meet the changing needs of the youngsters, and it should be described and repeated as often as the situation demands.

Parents

The nurse can provide support by being attentive to families’ responses to their children. Mothers and fathers need to experience success, joy, and pride in their children to give the support they need. Children, too, require support for their interactions, adjustments, and efforts. They must be reinforced for attempts to get to know their care providers and to communicate their needs to them.

It is important for nurses to examine their attitudes to determine their ability to engage in parent-professional partnerships. An essential characteristic is the belief that parents are equal to professionals and are experts regarding their child (see Nursing Care Guidelines box).

Communication among all family members is encouraged. Parent group sessions can help parents verbalize thoughts and feelings to each other but often do not take into account siblings’ or the child’s viewpoint. Therefore the nurse may need to set up a family session, such as during a home or clinic visit. Although the ideal situation is to have all the members present at one time, often this is not possible. Inviting members to participate at various visits is an appropriate alternative.

Parents can be encouraged to discuss their feelings toward the child, the impact of this event on their marriage, and associated stresses such as financial burdens. For most families, regardless of their income or insurance coverage, financial concerns exist. The costs of caring for a child with special needs can be overwhelming. In addition, the family wage earner may have to sacrifice job opportunities to remain close to a medical facility or to avoid losing insurance benefits.^*

The nurse regards fathers as able, effective parents, competent and capable of coping with the challenges they face. Every effort is made to include the father in visits, such as to the nursery, clinic, special school, and stimulation programs. The father is included in the assessment process, with specific emphasis on having him describe the child’s strengths and difficulties. It is not unusual to find two parents who have differing views of the child’s abilities, especially in the area of developmental disabilities.

Numerous volunteer and community resources are available that provide assistance, rehabilitation, equipment, and funding for a variety of health problems.^* National and local disease-oriented organizations may provide needed assistance and support to families that qualify. Many of these are discussed elsewhere in the text under the specific diagnosis. State and federal departments of health, mental health, social service, and labor may be able to help locate appropriate regional resources. For example, state programs for Children with Special Health Needs (formerly Crippled Children’s Services) provide financial assistance for children with many disabling conditions. Local and national sources of respite care and medical day care may be useful to families. Nurses should become acquainted with those in their communities and with vocational programs for special groups.

Parent-to-Parent Support

Just being with another parent who has shared similar experiences is helpful. It may not need to be a parent of a child with the same diagnosis, since parents in the process of adjusting to a child with special needs—or finding respite services, educational or rehabilitative services, special equipment vendors, and financial counseling—tread a common path. If the agency does not have a parent staff position, the nurse can contact parent groups that will often send a representative. Another strategy is to ask another parent to talk to the parents. The nurse should seek out a parent who is a good listener, has a nonjudgmental approach to differences in families, and possesses good advocacy and problem-solving skills.

The parent self-help group is another way to promote parent-to-parent support.^* Group members feel less alone and have the opportunity to observe both coping and mastery role modeling from other members. Parents’ groups are rich resources for information. Even if parents are unable to attend meetings, they can still benefit from group newsletters and other literature that often accompany membership. The nurse can foster parent participation in self-help groups by serving as a referral agent, a group advisory board member, a resource person, a group member, or an assistant in founding a group. Sometimes all that is required in starting a group is identifying one or two parents as leaders; sharing with them the names, telephone numbers, and addresses of other families who have expressed both an interest and a willingness to release their phone number and address; and guiding them in how to initiate a first meeting.

Advocate for Empowerment

Nurses can advocate for methods that foster opportunities for parent empowerment. For example, nurses can suggest reimbursement for travel and child care, plus stipends to enable parents’ voices to be heard at meetings and conferences. They can encourage parent membership on staff, committees, and boards. They can keep parents informed of pending legislation on child health issues or take action when parents inform them.

The Child

Through ongoing contacts with the child, the nurse (1) observes the child’s responses to the disorder, ability to function, and adaptive behaviors within the environment and with significant others; (2) explores the child’s own understanding of his or her illness or condition; and (3) provides support while the child learns to cope with his or her feelings. Children are encouraged to express their concerns rather than allowing others to express them for them, since open discussions may reduce anxiety.

One of the most important interventions is alleviating the child’s feeling of being different and normalizing his or her life as much as possible (see Nursing Care Guidelines box). Whenever possible, the nurse assists the family in assessing the child’s daily routine for indications of a need for normalizing practices. For example, the child who remains in a bedroom all day requires a restructured daily routine to provide activities in different parts of the house, such as eating in the kitchen or dining room with the family. Such children may also be deprived of social, recreational, and academic activities that can be better accommodated by applying normalization practices. For example, home and out-of-home health-related treatments should be planned at times that least interfere with normal daily activities.

Children who are concerned that their condition detracts from their physical attractiveness need attention focused on the normal aspects of appearance and capabilities. Health professionals help strengthen and consolidate the self-image by emphasizing the normal, while allowing children to express anger, isolation, fear of rejection, feelings of sadness, and loneliness. The children need positive reinforcement for compliance and any evidence of improvement. Anything that might improve attractiveness and contribute to a positive self-image is employed, such as makeup for a teenager with a scar, clothing that disguises a prosthesis, or a hairstyle or wig to cover a deformity or lost hair.

Siblings

The presence of a child with special needs in a family may result in parents paying less attention to the other children. Siblings may respond by developing negative attitudes toward the child or by expressing anger in different forms. The nurse can help by using anticipatory guidance, questioning the parents about what they believe is the best way to have siblings respond to the child and guiding them through ways to meet their other children’s needs for attention. This questioning should take place before serious negative effects occur.

Siblings may also experience embarrassment associated with having a brother or sister with an illness or disability. Parents are then faced with the difficulty of responding to this embarrassment in an understanding and appropriate manner without punishing the siblings for how they feel. Parents are encouraged to talk with the siblings about how they view their affected sibling. For example, siblings of a child who is retarded may express fears about their ability to bear normal children. Adolescents in particular may not be able to discuss these vital issues with their parents and may prefer to consult with the nurse. Many siblings benefit from sharing their concerns with other young people who are experiencing a similar situation. Support groups for siblings can help decrease isolation, promote expression of feelings, and provide examples of effective coping skills.

Many parents express concern about when and how to inform the other children in the family about a sibling’s disability. The answer depends on each child’s level of sophistication and understanding. However, it is usually best to inform the siblings before a neighbor or other nonfamily member does so. Uninformed siblings may fantasize or develop apprehensions that are out of proportion to the child’s actual condition. Furthermore, if parents choose to be silent or deceptive about the issue, they are setting a negative precedent for the siblings to follow, rather than encouraging the siblings to cope with the experience in a healthy and nurturing way.

The nurse is sensitive to the reactions of siblings and whenever possible intervenes to promote more positive adjustment. For example, siblings often mention that they are expected to take on additional responsibilities to help the parents care for the child. It is not unusual for them to express a positive reaction to assuming the extra duties but a negative response to feeling unappreciated for doing so. Such feelings can often be minimized by encouraging siblings to discuss this with the parents and by suggesting to parents ways of showing gratitude, such as an increase in allowance, special privileges, and, most significantly, verbal praise.

Activities of Daily Living

Parents also need guidance in how the condition may interfere with or alter activities of daily living, such as eating, dressing, sleeping, and toileting. One area frequently affected is nutrition. Common problems are undernutrition resulting from food being inappropriately restricted or loss of appetite, vomiting, or motor deficits that interfere with feeding; overnutrition may also occur, usually because of a caloric intake in excess of energy expenditure or boredom and lack of stimulation in other areas. Although the child requires the same basic nutrients as other children, the daily requirements may differ. Special nutritional considerations are discussed as appropriate throughout the text.

Safe Transportation

Modifications may also be needed regarding car safety. Children with conditions such as low birth weight (see Discharge Planning and Home Care, Chapter 9) or orthopedic, neuromuscular, or respiratory problems often cannot safely use conventional car restraints. For example, children with hip spica casts cannot sit properly in child safety seats (see Developmental Dysplasia of the Hip, Chapter 31). Modifications can be made to some commercial models, and for older children a special vest is available that secures the child to the back seat in a lying-down position.^*

If a child requires a wheelchair, the family should consult the wheelchair manufacturer for specific instructions regarding safe car transportation. Considerations for wheelchairs used with vehicle transportation must address securing both the wheelchair and the occupant in the wheelchair. Wheelchairs should be secured facing forward with tie downs at four points. The tie-down system should be dynamically crash tested, as should the occupant securement system that secures the child in the wheelchair. For example, use of trays would not be recommended for transportation. With children who must travel with additional medical equipment, this equipment (e.g., oxygen, monitors, or ventilators) should be anchored to the floor or underneath the vehicle seat or wheelchair. Soft padding should be added around the equipment to reduce movement. A second adult should be present to monitor the condition of a medically fragile child while traveling.

Primary Health Care

Children with special needs require all the usual health care recommended for any child. Attention to injury prevention, immunizations, dental health, and regular physical examinations is essential. Nurses can play an important role in reminding parents of these aspects of care that are so often neglected when the concern is focused on the child’s illness or disability. Specific discussions of nutrition, sleep and activity, dental health, and injury prevention are presented in the chapters on health promotion for specific age-groups. Immunizations are discussed in Chapter 10.

Parents also need to be aware of the importance of communicating the child’s condition in the event of a medical emergency. Young children are unable to give information about their disorder, and although older children may be reliable sources, after an accident they may be physically unable to speak. Therefore all children with any type of chronic condition that may affect medical care should wear some type of identification, such as a MedicAlert bracelet,^† or carry a card in their wallet that lists the medical condition and a phone number for emergency medical records and other personal information.

Early Childhood

During infancy the child is achieving basic trust through a satisfying, intimate, consistent relationship with his or her parents. However, the affected child’s early existence may be stressful, chaotic, and unsatisfying. Consequently, he or she may need more parental support and expressions of affection to achieve trust. Likewise, the parents require assistance in finding ways to meet the infant’s needs, such as how to hold a rigid or flaccid infant, how to feed a child with tongue thrust or episodes of dyspnea, and how to stimulate a child who seems incapable of achieving any skills. If hospitalizations are frequent or prolonged, every effort is made to preserve the parent-child relationship (see also Chapter 21). Hospital policies should promote visitation by and involvement of families.

During early childhood the goal is to achieve separation from parents, autonomy, and initiative. However, the natural parental response to having a sick child is overprotection. Parents need help in realizing the importance of brief separations of the child from them and from others involved in the child’s care and of providing social experiences outside the home whenever possible. Respite care, which provides temporary relief for family members, can be essential in allowing caregivers time away from the daily burdens.

Young children also need the opportunity to develop independence. Frequently the child is able to learn self-help skills, such as holding the bottle, finger feeding, and removing simple articles of clothing, but the parent continues to perform the act. The nurse can guide parents to the usual milestones expected from the child. When a child is unable to perform a skill independently, functional aids should be used. With innovation, many adaptations can be implemented in children’s environments to increase their mobility and independence and allow them to play like other children their age. For example, with slight modifications, a child with physical limitations may be able to ride a tricycle (Fig. 18-4).

Another critical component for normal child development is discipline. Discipline and guidance serve several purposes, such as providing children with boundaries on which to test out their behavior and teaching them socially acceptable behavior. Resentment and hostility can arise among siblings if different standards are applied to each child. The nurse’s responsibility is to help parents learn successful methods of managing a child’s behaviors before they become problems (see Limit Setting and Discipline, Chapter 3).

School Age

For school-age children the major tasks are entry into school and achieving a sense of industry. Although the importance of school in the life of all children is well known, school absences are significantly higher among children with chronic illness than among their healthy peers. The more school absences the child experiences, the more difficult it is to resume attendance, and school phobia may result. The child should return to school as soon as possible after diagnosis or treatments.

Preparation for entry into or resumption of school is best accomplished through a team approach with the parents, child, teacher, school nurse, and primary nurse in the hospital. Ideally, this planning should begin before hospital discharge, provided that the child is well enough to resume usual activities. A structured plan should be developed, with attention to those aspects of care that must be continued during school hours, such as administration of medication or other treatments.

Children also need preparation before entering or resuming school. Having a tutor in the hospital or home as soon as children are physically able helps them realize that school will continue and gives them time to consider this prospect (Fig. 18-5). They need to investigate possible answers to the many questions others will ask. One method of anticipatory preparation is to role-play, with the child as the “returned pupil” and the nurse or parent as “other schoolmates.” If the child returns to school with some obvious physical change, such as hair loss, amputation, or visible scar, the nurse might also ask questions about these alterations to prompt preparatory responses from the child.

Classroom peers also need preparation, and a joint plan of the teacher, nurse, and child is best. At a minimum, classmates should be given a description of the child’s condition, prepared for any visible changes in the child, and allowed an opportunity to ask questions. The child should have the option of attending this session. As the child’s condition changes, particularly if the illness is potentially fatal, school personnel, including the students, need periodic apprisal of the child’s status and preparation for what to expect.

Children with special needs are encouraged to maintain or reestablish relationships with peers and to participate according to their capabilities in any age-appropriate activities. Alternative activities may be substituted for those that are impossible or that place a strain on the child’s condition. Programs such as the Special Olympics^*. Several pamphlets on sports and recreation for children with disabilities are available from Easter Seals (see footnote, p. 589) and American Alliance for Health, Physical Education, Recreation and Dance, 1900 Association Drive, Reston, VA 20191; (703) 476-3400 or (800) 213-7193; http://www.aahperd.org. offer children an opportunity to compete witheir peers and to achieve athletic skill. Summer camps^†. allow children to associate with peers and develop a wide variety of skills. Children with special needs can derive enormous benefits from expressive activities, such as art, music, poetry, dance, and drama. With adaptive equipment and imagination, children can participate in a variety of activities. Organizations such as VSA Arts allow children to celebrate and share their accomplishments.^*. Children need the opportunity to interact with healthy peers and to engage in activities with groups or clubs composed of similarly affected age-mates. Such organizations as ostomy clubs, diabetes clubs, and cerebral palsy groups share information and provide support related to the special problems the members face.

Adolescence

Adolescence can be a particularly difficult period for the teenager and family. All of the needs discussed previously apply to this age-group as well. Developing independence or autonomy, however, is a major task for the adolescent as planning for the future becomes a prominent concern. Although the emphasis in the past has been on achieving independence from physical assistance, recent developments in the fields of special education, adolescent development, and family systems suggest redefining autonomy in terms of individuals’ capacities to take responsibility for their own behavior, to make decisions regarding their own lives, and to maintain supportive social relationships. Given this understanding, even individuals with severe impairment can be viewed as autonomous if they perceive their own needs and take responsibility for meeting them, either directly or by engaging the assistance of others. As adolescents become more autonomous, the nurse can help them articulate needs, participate in developing their own care plan, and discover and express how others can be of greatest assistance.

Physical symptoms are high on the teenager’s list of health-related concerns. Because adolescence is a time of enormous physical and emotional changes, it is important for the nurse to distinguish between body changes that are related to disability and those that are a result of normal body development. It can be a great comfort for teenagers with disabling conditions to know that many of the changes they experience are normal developmental outcomes.

A sense of feeling different from peers can lead to loneliness, isolation, and depression. Participation in groups of teenagers with chronic conditions or disabilities can alleviate feelings of isolation and smooth the transition to a meaningful relationship with one person in adulthood.

Ethical Considerations in End-of-LifeDecision Making

A number of ethical concerns arise when parents and health care professionals are deciding on the best course of care for the dying child. Many parents and health care providers are concerned that not offering treatment that would cause potential pain and suffering, but might extend life, would be considered euthanasia or assisted suicide. To eliminate such concerns, it is necessary to understand the various terms. Euthanasia involves an action carried out by a person other than the patient to end the life of the patient suffering from a terminal condition. The intent of this action is based on the belief that the act is “putting the person out of his or her misery”; this action has also been called mercy killing. Assisted suicide occurs when someone provides the patient with the means to end his or her life and the patient uses that means to do so. The important distinction between these two actions involves who is actually acting to end the person’s life.

The American Nurses Association Code of Ethics for Nurses (2001) does not support the active intent on the part of a nurse to end a person’s life. However, it does permit the nurse to provide interventions to relieve symptoms in the dying patient even when the interventions involve substantial risks of hastening death. When the prognosis for a patient is poor and death is the expected outcome, it is ethically acceptable to withhold or withdraw treatments that may cause pain and suffering and provide interventions that promote comfort and quality of life. Therefore providing palliative care for patients is the ethically correct choice in such a circumstance.

Physician–Health Care Team Decision Making

Decisions by physicians regarding care are often made on the basis of the progression of the disease or amount of trauma, the availability of treatment options that would provide cure from disease or restoration of health, the impact of such treatments on the child, and the child’s overall prognosis (Davis and Eng, 1998). Often the main determinants prompting physicians to discuss end-of-life issues and options for children with critical illnesses include the child’s age, premorbid cognitive condition and functional status, pain or discomfort, probability of survival, and quality of life (Masri, Farrell, Lacroix, and others, 2000). When the physician discusses this information openly with families, a shared decision-making process can occur regarding do-not-resuscitate (DNR) orders and care that is focused on the comfort of the child and family during the dying process.

Unfortunately, many families are not given the option of terminating treatment and pursuing care that is focused on comfort and quality of life when cure is unlikely, and staff may be reluctant to raise the question of DNR orders. This occurs for a number of reasons, including the belief that not being able to “save” a child is a “failure.” Also, the physician and other members of the health care team may lack knowledge of and experience with the principles of palliative care (Field and Behrman, 2004; Sumner, 2003; Sahler, Frager, Levetown, and others, 2000).

Parental Decision Making

Rarely are families prepared to cope with the numerous decisions that must be made when a child is dying. When the death is unexpected, as in the case of an accident or trauma, the confusion of emergency services and possibly an intensive care setting presents challenges to parents as they are asked to make difficult choices. If the child has either experienced a life-threatening illness such as cancer or lived with a chronic illness that has now reached its terminal phase, parents are often unprepared for the reality of their child’s impending death (see Family Focus box). Numerous studies have found that families facing the impending death of a child depend on information provided to them by the health care team, particularly an honest appraisal of the child’s prognosis, to make difficult decisions regarding care options for their child (Wolfe, Friebert, and Hilden, 2002; Hinds, Oakes, Furman, and others, 2001; James and Johnson, 1997).

As the group of health professionals who are most involved with families, nurses are in an excellent position to ensure that families are presented with the options available to them. The nurse’s first responsibility is to explore the family’s wishes. This is best done in concert with the physician, but at times may need to be initiated by the nurse. Statements such as “Tell me about your thoughts for the type of care you want your child to receive when he is dying” or “Have you considered the types of interventions you would like us to use when your child is near death?” can begin discussion of this sensitive but critical aspect of terminal care.

The Dying Child

Children need honest and accurate information about their illness, treatments, and prognosis; this information needs to be given in clear, simple language. In most situations this best occurs as a gradual process over time, characterized by increasingly open dialogue between parents, professionals, and the child (Young, Dixon-Woods, Windridge, and others, 2003). Providing an atmosphere of open communication early in the course of an illness facilitates answering difficult questions as the child’s condition worsens. Providing appropriate literature about the disease, as well as the experience of illness and possible death, is also helpful. Exactly how and when to involve children in decisions regarding care during their dying process and death is an individual matter. The child’s age or developmental level is an important consideration in the process (Table 18-3). In general, parents should be asked how they would like their child to be told of their prognosis, and they should be included in his or her care. Some parents may request that their child not be told that he or she is dying, even if the child asks. This often places health care providers in a difficult situation. Children, even at a young age, are perceptive. Even if they are not told outright that they are dying, they realize that something is seriously wrong and that it involves them. Often, helping parents understand that honesty and shared decision making between them and their child are important to the child’s and family’s emotional health will encourage parents to allow discussion of dying with their child. Parents may require professional support and guidance in this process from a nurse, social worker, or child life specialist who has a good relationship with the child and family.

If given the opportunity, children will tell others how much they want to know. Asking questions such as “If the disease came back, would you want to know?” “Do you want others to tell you everything, even if the news isn’t good?” or “If someone were not getting better [or more directly, “were dying”], do you think he would want to know?” helps children set the limits of how much truth they can accept and cope with. Children need time to process many feelings and much information so that they can assimilate and ideally accept the inevitable fact of mortality.

Care of the dying adolescent requires the nurse to become knowledgeable about any possible delays or alterations in normal growth and development. Legal and ethical issues also come to the forefront with respect to the age at which an adolescent should have autonomy in decision making with regard to care and treatment. Effective communication between the patient, family, and health care team is an important part of optimal care for the dying adolescent (Freyer, 2004).

Treatment Options for Terminally Ill Children

Based on the child’s and family’s decision regarding their wishes for terminal care, they have several options from which to choose.

Pain and Symptom Management

Pain control for children in the terminal stages of illness or injury must be given the highest priority. Despite ongoing efforts to educate physicians and nurses on pain management strategies in children, studies have reported that children continue to be undermedicated for their pain (Wolfe, Grier, Klar, and others, 2000). Nearly all children experience some amount of pain in the terminal phase of their illness. The current standard for treating children’s pain follows the World Health Organization’s analgesic stepladder (1996), which promotes tailoring the pain interventions to the child’s level of reported pain. Children’s pain should be assessed frequently, and medications adjusted as necessary. Pain medications should be given on a regular schedule, and extra doses for breakthrough pain should be available to maintain comfort. Opioid drugs such as morphine should be given for severe pain, and the dose should be increased as necessary to maintain optimal pain relief. Techniques such as distraction, relaxation techniques, and guided imagery (Lambert, 1999) should be combined with drug therapy to provide the child and family strategies to control pain (see Chapter 7 for further discussion of pain management strategies).

In addition to pain, children experience a variety of symptoms during their terminal course as a result of their disease process or as a side effect of medicines used to manage pain or other symptoms. These symptoms include fatigue, nausea and vomiting, constipation, anorexia, dyspnea, congestion, seizures, anxiety, depression, restlessness, agitation, and confusion (Wolfe, Friebert, and Hilden, 2002; Hellsten, Hockenberry, Lamb, and others, 2000). Each of these symptoms should be aggressively managed with appropriate medications or treatments and with interventions such as repositioning, relaxation, massage, and other measures to maintain the child’s comfort and quality of life.

Occasionally, children require very high doses of opioids to control pain. This may occur for several reasons. The child on long-term opioid pain management can become tolerant of the drug, meaning that it is necessary to give more drugs to maintain the same level of pain relief. This should not be confused with addiction, which is a psychologic dependence on the side effects of opioids. Addiction is not a factor in managing terminal pain in children. Other obvious reasons for requiring increased doses of opioids include progression of disease and other physiologic experiences of pain. It is important to understand that there is no maximum dose that can be given to control pain. However, nurses often express concern that administering doses of opioids that exceed what they are familiar with will hasten the child’s death. The principle of double effect (Box 18-9) addresses such concerns. It provides an ethical standard that supports the use of interventions intended to relieve pain and suffering even though there is a foreseeable possibility that death may be hastened (Rousseau, 2001). In cases in which the child is terminally ill and in severe pain, using large doses of opioids and sedatives to manage pain is justified when no other treatment options are available that would relieve the pain but make the risk of death less likely (Hawryluck and Harvey, 2000). See Chapter 7 for an extensive discussion of pain assessment and management.

Parents’ and Siblings’ Need for Education and Support

Parents are the primary caregivers when the child is at home, and nurses providing care to the child and family need to teach the family about the medications being given to the child, how to administer medications, and the use of non-pharmacologic techniques. Parents are kept informed of all medications and treatments given to a child in the hospital, and they are encouraged to participate in the child’s care to the extent that they desire. This empowers parents and provides a sense of control over the child’s comfort and well-being, reducing their fear that their child will be in pain or suffering as he or she is dying. Additionally, better bereavement outcomes (e.g., adaptive coping; family cohesion; less anxiety, stress, and depression) have been reported by parents who were actively involved in the care of their child (Goodenough, Drew, Higgins, and others, 2004; Lauer, Mulhern, Schell, and others, 1989). The grief work of fathers in particular seems to be facilitated when their child dies in the home setting. This finding may be related to the increased opportunity of working fathers to provide care to and spend time with their child at home vs the hospital setting.

Siblings may feel isolated and displaced during the time that their brother or sister is dying. Parents devote the majority of their time to the care and comfort of the dying child, causing siblings to feel left out of the parent–sick child relationship. Siblings may become resentful of their sick sibling and begin to feel guilty or ashamed about such feelings (Murray, 1999). Nurses can assist the family by helping the parents identify ways to involve siblings in the caring process, perhaps by bringing some supplies or favorite toy, game, or food item. Parents should also be encouraged to schedule time to spend with the other children where their focus is on them. Helping parents identify a trusted friend or family member who can sit with the ill child for a short period will allow them to attend to their own needs or those of their other children.

Home Deaths

The majority of children receiving hospice care die at home, often in their own room with family, pets, and other loved possessions around them. The physical process of dying can be distressing to parents because often the child slowly become less alert in the days before the actual death. The nurse can assist the family by providing them with information about what changes will occur as the child progresses through the dying process (Box 18-10). During this time, nursing visits often become more frequent and longer in duration to provide the family with additional support as the death nears. The most distressing change for parents to observe is the change in the respiratory pattern. In the final hours of life, the dying patient’s respirations may become labored, with deep breaths and long periods of apnea, referred to as Cheyne-Stokes respirations. Families are reassured that this is not distressing to the child and that it is a normal part of the dying process. However, the use of opioids can slow the respirations to make the child breathe more easily, and scopolamine, usually applied as a topical patch, can help reduce noisy respirations known as the “death rattle.” Noisy respirations are more likely to occur if the child is overhydrated.

All families have the option of admitting their child to the hospital if they feel unable to deal with the death. The child who dies at home must be pronounced dead; hospice programs typically have provisions so that this proceeds smoothly. In some circumstances the police may be notified, with an explanation of the circumstances to prevent unnecessary concern regarding abuse. Providing the police with the number of the responsible practitioner is usually all that is necessary to confirm the cause of death.

Hospital Deaths

Children dying in the hospital of terminal illnesses who are receiving supportive care interventions will experience a similar process. Again, increased nursing presence and attendance to the child’s and family’s needs provide comfort and support for many families.

Death resulting from accident or trauma or acute illness in settings such as the emergency department or intensive care unit often requires the active withdrawal of some form of life-supporting intervention, such as a ventilator or bypass machine. These situations often raise difficult ethical issues (Sine, Sumner, Gracy, and others, 2001), and parents are often less prepared for the actual moment of death. Nurses can assist these parents by providing detailed information about what will happen as supportive equipment is withdrawn, ensuring that appropriate pain medications are administered to prevent pain during the dying process, and allowing the parents time before the start of the withdrawal to be with and speak to their child. It is important that the nurse attempt to control the environment around the family at this time by providing privacy, asking if they would like to play music, softening lights and monitor noises, and arranging for any religious or cultural rituals that the family may want performed.

After the child’s death, the family should be allowed to remain with the body and hold or rock the child if they desire. After the nurse has removed all tubes and equipment from the body, parents should be given the option of assisting with the preparation of the body, such as bathing and dressing. It is important for the nurse to determine whether the family has any specific needs, since many cultures have adopted specific methods for coping with and mourning death and impeding these practices may interfere with the grieving process (Clements, Vigil, Manno, and others, 2003).

At some point the nurse discusses whether the family has made preparations for the burial service and whether the staff can help in any way. Parents often have concerns about the funeral, such as siblings’ involvement in the death rituals. Although no absolute answers exist regarding the question of siblings attending the funeral or burial services, the consensus is that the surviving children benefit from being involved in these events. However, children need preparation for postdeath services. They should be told what to expect, particularly how the deceased person will look if the coffin is open; allowed their private time to say good-bye; and permitted to stay as long as they wish. Ideally, the parents should prepare the siblings. If the parents’ grief prevents this communication, a significant family member or friend should substitute (see Family Focus box).

Parental Grief

Parental grief after the death of a child has been found to be the most intense, complex, long-lasting, and fluctuating grief experience when compared with that of other bereaved individuals. Although parents experience the primary loss of their child, many secondary losses are felt such as the loss of part of one’s self, hopes and dreams for the child’s future, the family unit, prior social and emotional community supports, and often spousal support. It is common for parents of the same child to experience different grief reactions.

Studies with bereaved parents have shown that grieving does not end with the severing of the bond with the deceased child, but rather involves a continuing bond between the parent and the deceased child (Klass, 2001). Parental resolution of grief is a process of integrating the dead child into daily life where the pain of losing a child is never completely gone, but lessens. There are occasions of brief relapse, but not to the degree experienced when the loss initially occurred. Thus parental grief work is never completed and is a timeless process of accommodating the new reality of being without a child, as it changes over time (Davies, 2004). A child’s death can also challenge the marital relationship in several ways. Maternal and paternal reactions often differ (Birenbaum, Stewart, and Phillips, 1996; Moriarty, Carroll, and Cotroneo, 1996; Vance, Najman, Thearle, and others, 1995). Different grieving styles between the couple may hinder communication and support for each other. Differing needs and expectations can place a strain on the marriage.

Sibling Grief

Each child grieves in his or her own way and on his or her own timeline. Children, even adolescents, grieve differently than adults. Adults and children differ more widely in their reactions to death than in their reactions to any other phenomenon. Children of all ages grieve the loss of a loved one, and their understanding and reactions to death depend on their age and developmental level. Children grieve for a longer duration, revisiting their grief as they grow and develop new understandings of death. However, they do not grieve 100% of the time. They grieve in spurts and can be emotional and sad in one instance and then, just as quickly, off and playing. Children express their grief though play and behavior. Children can be exquisitely attuned to their parents’ grief and will try to protect them by not asking questions or by trying not to upset them. This can set the stage for the sibling to try to become the “perfect child.” Children exhibit many of the grief reactions of adults, including physical sensations and illnesses, anger, guilt, sadness, loneliness, withdrawal, acting out, seep disturbances, isolation, and search for meaning. Again, nurses should be attentive for signs that siblings are struggling with their grief and provide guidance to parents when possible.

At times family members may need assistance in their grieving (see Nursing Care Guidelines box). Communication with the bereaved family is essential, but often nurses do not know what to say and feel helpless in offering words of comfort. The most supportive approach is to avoid judging the family’s reactions or offering advice or rationalizations and to focus on feelings. Perhaps the most valuable supportive measure the nurse can perform for families is to listen. Families understand that no words will relieve their pain; all they want is acceptance, understanding, and respect for their grief.

It is important for families to understand that mourning takes a long time. Whereas acute grief may last only weeks or months, resolving the loss is measured in years. Holidays and anniversaries can be particularly difficult, and people who previously had been supportive may now expect the family to have “adjusted.” Consequently, prolonged mourning is often silent and lonely.

Many families never receive the support and guidance that could help them resolve the loss. A plan for regular follow-up with bereaved families can be beneficial. At minimum, one follow-up phone call or meeting with the family should be arranged. Families can also be referred to self-help groups. When such groups are not available, nurses can be instrumental in bringing families together or facilitating parent and sibling groups. Formal bereavement programs or bereavement counseling can be helpful as well.

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