The Child with a Chronic Condition or Terminal Illness
Learning Objectives
After studying this chapter, you should be able to:
• Analyze the effects of a chronic illness on the child and family.
• Discuss the concerns and needs of the child and family dealing with a chronic illness.
• Compare the stages of death and dying.
• Apply the concepts of death and dying as they relate to the pediatric patient.
• Explain the concerns and needs of the child and family facing an impending death.
• Analyze the nurse’s response to death and dying in the pediatric population.
• Use the nursing process to describe nursing care of the chronically ill and dying child.
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Rapid advances in health care have changed the experience of chronic illness in childhood. Increasing numbers of children who previously would have died from their illnesses early in their lives are living longer (Chamberlain & Wise, 2011). Improvements in early diagnostic testing and treatment have enhanced quality of life, as well as longevity.
Chronic Illness Defined
A chronic illness or condition is long term, persisting more than 3 months. It does not spontaneously resolve, is usually without complete cure, frequently has residual characteristics that limit activities of daily living (ADLs), and requires adaptation or special assistance. Box 36-1 lists some of the common chronic conditions of childhood. Severity varies among chronic conditions. Many, such as epilepsy, diabetes, or sickle cell disease, although not physically apparent, may have a tremendous impact on the child and family. A chronic condition that is terminal but lasts only a short time may also have serious long-term effects on the surviving family. Although the first section of this chapter refers only to chronic conditions, this information also applies to terminal conditions. The U.S. Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health Bureau (2008) developed the following definition regarding the special needs of chronically and terminally ill children for planning and advocacy purposes.
The Family of the Child with Special Health Care Needs
Family Dynamics and Impact on the Family
Improvements in technology, reimbursement provisions (e.g., insurance, state and federal funding), and allocation of health care resources have all affected the family’s role in caring for the child with a chronic illness. Children with special needs can now be safely cared for in the home setting, with minimal periods of hospitalization. Such care, which includes psychosocial support, is the most desirable and cost-effective care for both child and family.
Although improved quality of life and longevity are positive developments, they do present certain difficulties. Despite health care advances, the child and family must live with a constant physical problem and uncertainty that require consistent, ongoing attention and adaptation. This is referred to as the illness trajectory; the course of a chronic illness and the impact on the lives of all those involved. For children, it is difficult to predict accurately the progression of many serious, long-term illnesses (Ullrich, Duncan, Joselow, et al., 2011).
Chronic illness is stressful and can create situational crises for families. A situational crisis is an unexpected crisis for which the family’s usual problem-solving abilities are not adequate. However, various studies show that some families reorganize and actually become stronger in response to a situational crisis. These families are considered resilient; that is, they are able to recover from adversities associated with chronic illness. They do this through normalization, making necessary changes in their lives and adjusting to the presence of the chronic illness. They actively work on responses that will help counteract the illness and resulting abnormal behaviors, to maintain social roles that are appropriate and valued.
Family resiliency implies present and future success at managing complex aspects of a crisis, such as having a child with a chronic condition. Resilient families are able to focus on their strengths to assist them with problem solving (Frain, Berven, Tschopp, et al., 2007). Resilient families exhibit many important traits, but a predominant trait is family cohesiveness. This cohesion is achieved through active efforts to keep the family intact by sharing the new responsibilities related to the chronic condition, as well as the routine, enjoyable activities of family life. Although family life may be altered by the crisis, resilient families become skilled at successfully managing day-to-day tasks, even though roles within the family structure might need to be altered (Frain et al., 2007). Families accomplish this by developing protective factors to counteract the stress inherent in caring for a child with a chronic illness and by accessing resources to assist them. Processes that enhance family resilience include the following (Frain et al., 2007; Patterson, 2002):
• Reframing the situation to identify positive rather than negative aspects
• Maintaining high-quality and open communication patterns
• Maintaining social integration
Maintaining social integration involves balancing the needs of the family with the needs imposed by the child’s condition, as well as reciprocal interactions with the community relative to the child’s needs. Resilient families are careful in allocating resources, including money, time, and energy, as they balance various needs. This balance ensures that no child in the family, ill or well, is neglected or overindulged. Additionally, it ensures that the condition-related needs of the ill child are balanced with normal growth and development needs and that needs are met without overprotection. In resilient families, the child’s condition-related needs are incorporated into the family’s daily life; they do not become the focus around which the activities of the entire family revolve. This integration helps achieve and maintain the family’s new normality imposed by the illness. In such a family setting, baseball practices, school activities, ballet recitals, and other activities do not stop for either the ill child or the well siblings. Rather, care of the child, medical appointments, and treatments for the ill child are arranged around these activities to the degree possible. When conflicts do arise, parents (or other family members or friends) alternate responsibility for maintaining the activities of both the ill child and well siblings.
Equitable allocation of care giving and encouragement of parental involvement with each other and the well siblings help maintain appropriate family boundaries. When either of the two parents becomes primarily involved in meeting the needs of the ill child, the parental relationship suffers. To keep these boundaries intact, resilient families pay specific attention to maintaining a positive parental relationship. They also work to avoid showing favoritism toward the ill child.
Single-parent families may encounter additional difficulties that heighten the risks that the chronic condition will negatively affect resilience and impede normalization. Social support may not be inherent in the family structure, so these families are at increased risk for social isolation. Health care providers can refer single parents to support groups, put them in contact with other parents who have a child with a similar chronic condition, or organize group-sharing experiences between parents knowledgeable in the care of the child with a particular chronic condition and parents of newly diagnosed children.
Boundary problems of a different sort can arise when the need for outside care and assistance increases, such as the presence of home health or hospice personnel. Whether they are in the home around the clock or for various shifts throughout the week, external family boundaries can be negatively affected. However, difficulties can be minimized if family members adopt an assertive role in managing the child’s care and, along with the health care personnel, work to maintain professional relationships and boundaries with caregivers.
Resilient families consistently work to ensure appropriate communication, which may be more difficult because of new, condition-related language (medical or otherwise); an increased need for problem-solving–based communication; and, most important, the need to express emotions. Accepting the validity of all emotions and learning suitable means of expressing them may be difficult. However, many families report that the experience of living with a chronic illness brings about positive life changes, such as increased empathy, increased family unity, and new meanings to life.
Even when positive meaning is attached to a child’s chronic condition, much flexibility is required of family members regarding family roles and expectations. This flexibility is also required of the health care team, both for the benefit of the family and as a means of achieving a positive, collaborative relationship between the team and the family. The team becomes an integral part of family life. The quality of this relationship may affect how the entire family adapts to and copes with the child’s condition.
For resilient families, coping is an active process that entails learning about their child’s illness and available resources. These families do not sit idly by, letting others meet their child’s needs. They are also the strongest advocates for their child. Subsequently, they have a tremendous need for any information concerning their child’s condition. The nurse has an important role in helping families educate themselves and learn to meet their child’s special health care needs.
At times of extreme stress, such as periods of unexpected physical setbacks, exacerbations, worsening or relapse of the condition, as well as at the time of death, families may slip into less effective patterns of behavior and coping. Gentle reminders, support, and encouragement may be all the assistance that a resilient family needs to help members resume the behaviors that foster resiliency despite the many ongoing stressors and uncertainties of a chronic condition.
Coping and the Grieving Process
The most important aspect of a chronic illness is that it affects the entire family, not just the ill child. This scope of concern necessitates consistent family-centered nursing care (see Chapter 3). All family members respond to the child’s chronic condition. However, responses of individual family members vary according to their age and developmental level, their relationship and involvement with the ill child, and any previous experiences they have had with a health care problem.
Chronic and terminal conditions involve the loss of health and result in grief. Grief is a normal psychophysiologic process that occurs in response to a specific loss. A normal and frequent response to such conditions includes the five stages of grief as defined by Elisabeth Kübler-Ross (1969). Her work identified the stages in relation to the anticipated death of an adult. However, they can apply to children as well as adults and to the grief associated with a chronic condition as well as a terminal illness. The ill child, siblings, parents, and other family members may experience these stages.
The stages include denial, anger, bargaining, sadness or depression, and acceptance. During the first stage, denial, individuals react with disbelief and shock. Feelings of “no, not me” and “no, not my loved one” occur whether the person is explicitly told of the diagnosis or, in the case of some children, they figure it out on their own. Anger usually follows denial. This may include feelings of rage and resentment directed at themselves or at others. At this point, the questions of “why me?” and “why my loved one?” may also occur. Anger may recur at any time during the process of the illness. Bargaining then happens, whereby the individual attempts to postpone the inevitable. Although most bargaining is with a spiritual deity, bargaining with oneself or others may also take place.
Depression is the next stage. Such sadness may be for either past losses or those impending losses. Past losses may include physical losses, such as a change in appearance (e.g., hair loss), lifestyle changes, or changes in physical ability. Impending losses may include imminent loss of loved ones. It may also include preparing loved ones for the absence created by death. The last stage is acceptance, whereby the individual is no longer depressed or angry. Although acceptance is not necessarily a happy stage, it is generally a time of comfort and peace.
Individuals need different periods of time to work through and resolve the feelings of one stage before proceeding to the next stage. The stages are not always experienced sequentially. Some fluctuation may recur across stages before acceptance and comfort are reached. Acceptance of a chronic illness can take place even in the presence of noticeable denial. Such denial might appear to be maintained throughout the course of the illness. Because children have less predictable and more variable protective mechanisms, they may use denial more frequently than adults. An individual who has a positive, optimistic outlook and who focuses on concerns and tasks of the day rather than on fears about the condition may appear to be adjusting well; however, he or she also may be using denial as a protective coping mechanism.
The period for the presence of denial is important. Short-term, true denial, although often considered maladaptive, may truly be adaptive. Denial that persists may be maladaptive and part of a prolonged grief response (Maciejewski, Zhang, Block, et al., 2007). Persistent denial can be contributory to dysfunctional coping patterns and can interfere with problem solving. Attempting to establish whether true, ongoing denial is present is important. Many times what appears to be denial is simply the individual’s expression of lost hopes for the ill child. This might be seen as a mother’s talk of how beautiful her daughter will look as a bride. It might be a sibling’s discussion as to how much fun he or she will have with the ill child next summer at camp. Families need to recognize and express the most difficult aspects of their impending loss in order to grieve fully and appropriately. Another aspect of what appears to be denial is the expression of the faith that a miracle will occur and that the child will not die after all.
As adjustment to the condition progresses, many parents experience chronic sorrow related to the unending nature of the child’s condition and the ongoing feelings of loss (George, Vickers, Wilkes, et al., 2006-2007). Contributing to this are feelings of helplessness, emotional and psychological stress, and uncertainty related to the unpredictable course of the child’s illness or condition (George et al., 2006-2007). Chronic sorrow is a normal process and may never resolve. However, adaptation to the presence of the illness occurs. The family establishes a “new normal,” and the family’s life continues. Chronic sorrow, however, is not the same as prolonged or chronic grief. Chronic grief refers to mourning that is of excessive duration and interferes with the individual’s ability to return to normal living, after the death of a significant person (Maciejewski et al., 2007).
The first step in supporting families and helping them deal with chronic sorrow is to listen, and then recognize and acknowledge their emotions. The family can be assisted to recognize the normality of such feelings and emotions themselves. Family members should be gently encouraged to acknowledge and express feelings of chronic sorrow, to the degree with which they are comfortable. However, at the same time, they should be encouraged and assisted to verbalize and demonstrate realistic hopes and dreams.
George et al. (2006-2007) found that thoughtlessness on the part of caring professionals can trigger or exacerbate feelings of chronic sorrow in parents of children with chronic illness. Not recognizing parents as experts in their child’s care, making hurtful or insensitive comments about the child, repeatedly asking for the child’s history, or not providing appropriate support or understanding of the parents’ emotional needs were seen as triggers for feelings of grief. Nurses need to be particularly aware of how they communicate with parents. Showing concern and an attitude of support, while facilitating the expression of feelings by the parents, is optimal nursing care for parents coping with chronic sorrow (Thurgate, 2006).
Many support organizations, both general and disease specific, offer a wealth of information, support, and assistance to families of a child with a chronic or terminal illness. They offer much beyond the information related to the child’s condition. The nurse should introduce the family to such services and, as necessary, assist them to use these services fully. Conversely, a family’s decision not to use support services should be respected.
Supportive services may be particularly important when observation and assessment of family behaviors indicate problems that may necessitate referral to a mental health professional. In caring for children with chronic or terminal illnesses and their families, one issue that is frequently overlooked is that death may occur unexpectedly or earlier than anticipated. This is an important but difficult issue to address with families. It should be done in the early stage of the condition to prepare them if the death does happen in an unexpected manner. The nurse should support children and their families through all stages of the grief process. Supporting the family requires understanding the family’s current knowledge base, coping skills, and personal beliefs, as well as recognizing and attending to the grief-related problems that arise.
The Child with Special Health Care Needs
Coping and Growth and Development Concerns
Children with chronic disorders have many different concerns and needs related to their conditions, not the least of which is successful navigation of the stages of growth and development. Children’s responses to illness are influenced by their age at the onset of the disorder, as well as growth and development considerations throughout the course of the illness. Nursing care is planned accordingly.
Chronic and terminal conditions often span a number of years and developmental stages. Regardless of the stage, concerns related to self-esteem, self-reliance, and autonomy are prevalent among children with chronic conditions. Many will experience altered body awareness and body image as a result of physical changes related to the illness or treatment. These changes frequently have a negative impact on children’s self-esteem. Control and autonomy may be decreased because of hospitalizations and treatment regimens that offer few decision-making opportunities for the child. Socialization activities and adjustment may be limited as a result of hospitalization and the side effects of the illness or treatment. Side effects, including altered appearance, decreased physical ability, or increased susceptibility to infection, may interfere with age-appropriate socialization. There can be times when a medical condition (e.g., infection risk, bleeding risk) may not keep the child from participating; rather, the child declines to do so because of fears regarding his or her appearance or physical abilities.
Such factors may profoundly affect a child’s acquisition of age-appropriate growth and developmental skills, especially during adolescence. An important goal is to minimize the effects of illness and hospitalization and to maximize the child’s developmental potential. This is true regardless of the age or developmental stage, and the nurse should understand issues concerning self-esteem and autonomy in relation to each stage of growth and development (Box 36-2).
Despite the understanding and interventions of family and staff, a variety of consequences may frequently occur among children with a chronic condition or illness. Most are minimal, short lived, and expected as a part of the course of a chronic condition. For example, stranger anxiety may be heightened or may reappear months after previous resolution among infants and toddlers.
Temporary regression may be seen with children of all ages, including adolescents. However, it is more prevalent among older infants through the young school-age years. Toddlers use regression frequently as they attempt to cope with the stress of a serious illness. Despite the normalcy of regression, it may be unsettling to the child and family because it involves the loss of recently acquired skills or the reappearance of behaviors seen when the child was younger. Common regressive behaviors include reverting back to a bottle, pacifier, or thumb-sucking; a change in toileting skills; an increased incidence of bed-wetting; and an increased use of “baby talk” or communication techniques more appropriate for younger children.
Another possible difficulty is a fluctuation in the child’s age-appropriate communication patterns between family and members of the health care team. Lack of communication or altered communication patterns with health care providers may occur in the clinic or hospital setting, with regular patterns of communication resuming at home. Among older preschoolers, a lack of communication may be a form of withdrawal or an expression of stubbornness and a refusal to cooperate. This problem may also be seen in school-age children and adolescents, usually related to issues involving independence and self-esteem.
Coping and Parental Responses to Developmental Issues
Regardless of the developmental stage or the number of years that a chronic illness has existed, the basic guidelines for child rearing still apply to all children in the family. Boundaries, discipline, and consistency are equally important to both the ill child and the well siblings. A good example is the mother of a 3-year-old with cancer who would frequently remind both the ill child and her older sibling that cancer is no excuse for bad manners!
Experiencing a chronic illness is confusing, especially for children whose cognitive abilities are not sufficiently developed to allow understanding that could help them cope with the stress. When changes in a child’s world begin to affect the only constant he or she knows, the family, this is often reflected in the child’s behavior. Negative behavior may result from the stress of the illness and changes in the family and environment. Previously existing negative behaviors may worsen, making treatment and a positive, cooperative relationship with health care team members difficult. Future behavior and long-term development may be affected as well. At the time their child is diagnosed, parents should be reminded about the importance of maintaining previous rules and expectations. Chronically ill children are more likely to experience behavioral and psychological issues. Despite this, most children with chronic health problems will experience the same level of behavioral and psychological issues as other children in the same age-group (Chamberlain & Wise, 2011).
NURSING QUALITY ALERTThe Child With a Chronic Illness
The goals for any child with a chronic illness are to achieve and maintain the highest level of health and function possible—cognitively, emotionally, physically, and psychosocially. The aim is similar for the family system, including parents or guardians, siblings, and extended family members. Goals for the entire family are to remain intact, achieve and maintain normalization, and maximize function throughout the illness. This necessitates a family-centered approach to nursing care.
The nursing process for the child with a chronic illness is ongoing for the duration of the illness. It may be more complex because of goals that are both physical and psychosocial. The psychosocial environment is significant in that it greatly influences the manner in which the child relates to others and copes with stress. In addition, the entire family is involved, as well as the ill child. Care is provided over a span of years and must often incorporate rapid changes in the child’s growth and development. The nurse is prepared for a changing assessment, both physical and psychosocial, related to duration of care and fluctuations of the illness.
Planning and implementation of nursing care are based on several factors. The child’s physical condition is the first consideration. Generalization across broad categories of illnesses, such as cancer, respiratory conditions, or cardiac problems, is not possible. Each illness has specific implications, including subsequent disabilities that impact the child’s growth and development across the span of the illness. Additionally, the needs, coping mechanisms, and available resources of child and family are influencing factors. Nursing care includes assisting the child and family to accept, understand, and incorporate the illness appropriately into each stage of growth and development, regardless of the child’s age at diagnosis.
Ongoing Care
Evaluations, as well as subsequent modifications in the planning and implementation of nursing care, often take place on a daily basis because of the child’s frequent physical changes. Unexpected setbacks, such as an exacerbation, a relapse, a critical infection, an undesirable response to medication, a lack of physical progress, or the need to undergo a medical or surgical procedure unexpectedly or sooner than anticipated, may be a standard part of the chronic illness. Goals may have to be repeatedly altered. All changes may be stressful and difficult for the child and family to handle even though they have been coping with an illness for a long period of time. Continuous support and reassurance are necessary throughout the course of the illness.
Education
With an illness that continues for several years, numerous changes may occur because of the child’s physical condition or the child’s increasing age. Education involves the child and family, addressing both physical and psychosocial needs. It is imperative that the family has an accurate knowledge base in order to provide care to the child at home.
One important consideration in relation to education and support for the ill child and siblings is involvement of a child life specialist (Figure 36-1). The child life specialist uses methods that are educational, supportive, and therapeutic. These may include medical play and art, and therapeutic play and art. All are similar in that they present the ill child with opportunities for learning, for increased expression of feelings, and for development of additional coping methods. The nurse may also use some of these techniques in daily care or when a child life specialist cannot be present. Child life services are available for siblings as well.
Communication
Communication with the ill child may be more difficult than physical care (see Chapter 4). Communication is the most important factor in establishing a good relationship with the child and family. Appropriate communication involves both honesty and compassion. It is always based on the child’s age and development. Following these principles can help decrease the child’s fears and misunderstandings. This may also help increase the child’s confidence in nurses and other members of the health care team. Increased cooperation with the therapeutic regimen is an additional benefit. If fears and misunderstandings are not alleviated at the beginning and caregivers do not gain the child’s trust, establishing trust at a later date can be more difficult. This is particularly true when the nursing care involves unpleasant or painful medications and treatments.
To prevent misinterpretations and misunderstandings, the nurse can ask children to explain what they know and understand. The nurse should also strive to understand what the child is really asking. The classic example of miscommunication is the child who asks where she comes from and hears the entire story of reproduction, when all she really wanted to know was whether her family was from Texas or Oklahoma. Clarifying questions can help the nurse avoid providing more information than the child wants or can handle emotionally. Providing too much information may be overwhelming and frightening to the child. It may also inhibit future questions and interaction with the nurses.
Honesty and trust must be maintained at all times when caring for the child. These principles should be encouraged among the family and other members of the health care team. Complete honesty may cause problems for some family and staff members, especially when they face the difficult questions that often arise when caring for a chronically or terminally ill child. The most difficult and feared questions are usually centered on whether the child is going to die and why he or she became sick and is dying. These are followed closely by questions concerning the deaths of other children whom the child has known or with whom the child has developed a close relationship.
Children are often reluctant to ask questions of adults and to ask questions when they fear the answers. Many times the child already knows the answer, so the question is really a test concerning honesty and a point of reference in the child’s relationship with the adult (parent or health care provider). As with adults, children need honesty to establish trust. They may not understand the use of dishonesty as a means of protecting them against emotional pain or unpleasantness. Once children have experienced dishonesty from an adult, they may feel that they cannot and will not trust any of the adults around them, parents or health care providers. Dishonesty may have damaging effects, particularly when trying to reassure a child and gain cooperation. If a chronic condition becomes terminal, the child’s trust can be paramount to achieving comfort and peace.
For children with a chronic condition, honesty may increase their emotional pain to some degree and, conversely, help comfort them at the same time. Honest answers to a child’s difficult questions are not always handled well by family members. The nurse strives to help family members understand the importance of maintaining the child’s trust, to explore their feelings about providing honest answers to the child’s questions, and to establish communication guidelines. The family may give instructions about communication that brings about conflict for the nurse, both professionally and personally. The family may ask that the nurse answer deceitfully concerning the serious nature of the illness or the fact that the child is expected to die. In many situations, a compromise is reached in that the nurse will not initiate conversations that may lead to questions about whether the child is expected to die. However, if the child initiates the conversation and asks questions directly, the nurse will reply honestly, in terms approved by the family. This may not work with some families. In such instances, other members of the health care team (physicians, child life therapists, social workers, pastoral care providers) can become involved to make communication decisions that best suit the needs of all involved.
Caring for Parents
Health care professionals can support parents in the following ways (Lindblad, Rasmussen, & Sandman, 2005):
• Increase parents’ confidence.
• Acknowledge each parent as a person.
• Acknowledge the parents as the child’s health care provider and the experts on the child.
• Acknowledge the child as valuable and unique.
• Help the parents see the child’s potential and abilities.
• Help the parents understand the child’s normal growth and development needs.
Grief Education and Support
Nursing care should include education about the child’s condition and treatment, as well as education concerning any grief issues. The nurse helps all family members, including the child, to understand and express their grief in the manner most comfortable for them. Taking time to provide care and support in this area is as important as physical care. Many adults have not experienced illness or death before the child’s diagnosis and are not accustomed to the idea of grief, much less grief as a normal, healthy process. In addition, some family members may have had a previous experience with dying, death, and grief that they perceived as negative and distressing. Both situations may increase support needs among the family.
The nurse educates the family about the importance of the grief process and provides opportunities for grieving. Nursing care may include conversations and time “being present” with family. Being present for all family members as the need arises entails the important aspect of listening and sitting in silence. Many times family members do not need or want conversation; they just want to be with someone who knows their child and is familiar with what they might be experiencing. This may be true even for siblings. Children who just want to be with an adult may require only that the person sit with them while they play. The expression of emotions is recognized to be more beneficial for most individuals than holding the emotions inside. However, for some, emotional expressions are not a normal or comfortable part of their lives before their child’s illness. The nurse accepts each family member’s choice to express or not express emotions while letting them know that a caring individual is available at any time should the need for talking and sharing arise.
Cultural and Religious Beliefs
Groves (2010) notes that culture is a unique and dynamic force that includes learned values, beliefs, and practices that can be affected by the social environment. Culture and religion influence the meaning of illness and death, as well as customs observed by the family. Assessing the perceptions of the child and family regarding chronic illness, hospitalization, and disability in light of the family’s culture facilitates culturally sensitive nursing care. When faced with an unfamiliar culture or religion, the nurse becomes familiar with beliefs and practices honored and used by the family. The nurse and the entire health care team should communicate acceptance of the family’s beliefs. Team members must not assume that a family belongs to a particular religion or denomination based solely on their cultural background. In addition, they should not assume that a family adheres to all beliefs and practices of its religion or denomination. If in doubt, the nurse should ask questions of the family, stressing the need for information to provide the most comprehensive and appropriate care possible.
Referrals
To the degree possible, the nurse should endeavor to make sure that the physical, emotional, psychosocial, and cognitive needs of the child and family are met. Additionally, nursing care includes assisting family members to provide for the child’s physical and psychosocial needs. The nurse works as a member of an extensive health care team and determines when referrals need to be made to professionals with expertise needed by the child and family. For example, the child with a chronic illness and the family may need services from clergy members, psychologists, and social workers. Hospital chaplains generally have access to information on various religious beliefs, as well as to clergy members from different religious groups. Psychologists can provide ongoing counseling to the child and family on an individual or group basis. Social workers are able to provide information concerning available resources for the family related to finances, insurance, government assistance, housing, transportation, and medical care and supplies.
Schooling
The face of public education and the child with special health care needs has changed dramatically. The Education for All Handicapped Children Act (PL 94-142), now codified as Individuals with Disabilities Education Act (IDEA), and subsequent amendments (most notably the Individuals with Disabilities Education Act, 1997) ensure a free, public education for each child with a disability or other chronic condition. The act also mandates that special education and support services be provided in the least restrictive environment for children ages 3 years and older. Consequently, children with a wide variety of physical needs are able to receive appropriate educational services and attend public school. These needs range from relatively simple needs (e.g., medication administration, respiratory treatments) to more extensive needs (e.g., gastrostomy tube feedings, management of tracheostomy tubes, ventilators). Facilitating the start of school or return to school for the child with special needs requires preparation and assistance from a health care team that includes the child, family, hospital or clinic nurse, school nurse, teacher, counselor, and director of special education for the school district.
A specific, structured plan of care is developed before the child’s return to school. This is accomplished by the school system through a legally mandated process referred to as an individualized educational program (IEP) or admission, review, and dismissal (ARD) meeting. This plan is developed with input from members of the health care team, who are encouraged to attend the actual meeting, if possible. The plan addresses cognitive and physical needs in relation to the child’s school attendance. This plan includes learning goals that might require some modifications as a result of the child’s special needs and chronic condition, as well as the specific tasks for achieving such goals. The plan also addresses any special health care that needs to be provided while the child is in school, such as medications, feedings, or breathing treatments. Planning conferences are held before the child is scheduled to start school for the first time after his or her condition has been diagnosed. After the initial plan, an IEP or ARD meeting must take place at least once a year and when changes in the child’s condition occur that will necessitate changes in the schooling plan. Most schools offer children the opportunity to attend school full or part time as their conditions allow and to receive homebound instruction when necessary. Regardless of the type of school services the child is receiving, the hospital or clinic nurse may need to provide ongoing education and support to the school nurse and other school personnel.
Special considerations are given in the school setting for a child who is immunosuppressed, whether related to a disease or to treatment. Preventing the infection that can occur with immunosuppression is a challenge in the school setting regardless of the age of the child. Reasons include the crowded conditions in school classrooms and the often inadequate infection control practices of children (e.g., good hand hygiene). The school nurse should alert teachers to be particularly vigilant and notify the nurse if any children with an infectious disease are present in the classroom. Families of all school children are asked to notify the school if their children contract a serious communicable illness such as strep throat and to keep their children out of school until their disease is no longer contagious. The school nurse may also visit classrooms and present health-teaching modules on general infection-prevention practices. The school nurse must obtain information about the specific signs to look for when monitoring the condition of the chronically ill child and how to contact the child’s health care team directly and quickly if concerns arise.
Ongoing psychosocial support may also be necessary for the child and family in relation to school. Parents may experience mixed emotions regarding their child’s return to school. They are likely to be pleased and excited that the child is well enough to attend school. At the same time, they may be concerned about the child’s well-being during school hours, particularly whether the child’s special health care needs will be met appropriately. For children with a terminal condition, parents may also experience a degree of sorrow about being apart during what limited time they have with their child. The child’s siblings may also experience similar feelings. The nurse can best provide support by maintaining ongoing communication with the family and recognizing that problems and concerns with school may vary over time. Referral to a spiritual counselor, social worker, or mental health professional may also be helpful for the psychosocial support of the child and family.
Regardless of whether the child is transitioning into or re-entering school, the child, parents, other family members, school nurse, teacher, school personnel, and health care providers need to understand the child’s chronic condition and should partner in facilitating needed accommodations within the school setting (Erickson, Splett, Mullett, et al., 2006). The goal of this partnership is to enhance the child’s independence and create a positive climate for learning.
The Nurse as Liaison
The nurse is a liaison for the family in many different situations. The most important liaison work, however, is to link the family with other members of the health care team, particularly the physician. In this capacity, the nurse can help guarantee that family members receive accurate information and have an appropriate understanding of their child’s condition, as well as resulting psychosocial and physical needs. These efforts can facilitate the family’s health care planning, working relationship with the health care team, communication with care providers, and compliance with the treatment plan.
Caring for Siblings
The concerns and needs of siblings in relation to their brother or sister’s chronic illness vary according to age and developmental stage. Thus, fluctuations are common when the child’s chronic condition exists for several years. Siblings may have many of the same anxieties and fears as their parents.
Siblings often have feelings of guilt regarding their perceived role in the ill child’s condition. Many children have had thoughts of what life would be like without having to share material possessions and parental love with their sibling(s). When a sibling then becomes ill, the guilt and associated emotions may be overwhelming. The well siblings should be reassured about the normalcy of such feelings and that the illness is not the result of anything that they said, thought, or did.
Nursing care of siblings involves education regarding the ill child’s condition, treatment, physical changes, disabilities, and expected disease progression. The siblings should ideally be kept up to date regarding changes in the ill child’s condition, both positive and negative. The same principles of honest communication apply both to siblings and to the child with the illness. However, what information is ultimately shared with siblings is at the parents’ discretion. The hospital setting’s rules, equipment, and personnel must also be explained to siblings in terms appropriate for their developmental level. If possible and suitable, siblings may be allowed to participate in physically caring for the ill child.
Siblings may regress in developmental stage and activities. Parents frequently do not expect such behavioral changes from a well sibling. They may need to be reminded that in the presence of a stressful event, regression is a normal coping mechanism for all children, both ill and well.
The nurse can help siblings understand that illness creates stress, which may result in difficult or painful emotions, such as anger and jealousy. Children need to know that these emotions are a normal part of life, although they are often perceived as negative and harmful. Siblings must be allowed to have and express these feelings (Figure 36-2). Health care professionals and the family must provide care and support to meet the psychosocial and emotional needs of the siblings in order to prevent added stress for the family that may negatively affect the ill child.
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