Family-Centered Care of the Child During Illness and Hospitalization

Family-Centered Care of the Child During Illness and Hospitalization

Marilyn J. Hockenberry

Stressors of Hospitalization and Children’s Reactions

Often illness and hospitalization are the first crises children must face. Especially during the early years, children are particularly vulnerable to these stressors because (1) stress represents a change from the usual state of health and environmental routine, and (2) children have a limited number of coping mechanisms to resolve stressors. Major stressors of hospitalization include separation, loss of control, bodily injury, and pain. Children’s reactions to these crises are influenced by their developmental age; their previous experience with illness, separation, or hospitalization; their innate and acquired coping skills; the seriousness of the diagnosis; and the support system available. Children also expressed fears caused by the unfamiliar environment or lack of information; child-staff relations; and the physical, social, and symbolic environment (Samela, Salanterä, and Aronen, 2009).

Separation Anxiety

The major stress from middle infancy throughout the preschool years, especially for children ages 6 to 30 months, is separation anxiety, also called anaclitic depression. The principal behavioral responses to this stressor during early childhood are summarized in Box 38-1. During the stage of protest, children react aggressively to the separation from the parent. They cry and scream for their parents, refuse the attention of anyone else, and are inconsolable in their grief (Fig. 38-1). In contrast, through the stage of despair, the crying stops, and depression is evident. The child is much less active, is uninterested in play or food, and withdraws from others (Fig. 38-2).

Box 38-1   Manifestations of Separation Anxiety in Young Children

The third stage is detachment, also called denial. Superficially it appears that the child has finally adjusted to the loss. He or she becomes more interested in the surroundings, plays with others, and seems to form new relationships. However, this behavior is the result of resignation and is not a sign of contentment. The child detaches from the parent in an effort to escape the emotional pain of desiring the parent’s presence and copes by forming shallow relationships with others, becoming increasingly self-centered, and attaching primary importance to material objects. This is the most serious stage because reversal of the potential adverse effects is less likely to occur after detachment is established. However, in most situations the temporary separations imposed by hospitalization do not cause such prolonged parental absences that the child enters into detachment. In addition, considerable evidence suggests that, even with stressors such as separation, children are remarkably adaptable, and permanent ill effects are rare.

Although progression to the stage of detachment is uncommon, the initial stages are observed frequently, even with brief separations from either parent. Unless health team members understand the meaning of each stage of behavior, they may erroneously label the behaviors as positive or negative. For example, they may see the loud crying of the protest phase as “bad” behavior. Because the protests increase when a stranger approaches the child, they may interpret that reaction as meaning they should stay away. During the quiet, withdrawn phase of despair, health team members may think that the child is finally “settling in” to the new surroundings, and they may see the detachment behaviors as proof of a “positive adjustment.” The faster this stage is reached, the more likely it is that the child will be regarded as the “ideal patient.”

Because children seem to react “negatively” to visits by their parents, uninformed observers feel justified in restricting parental visiting privileges. For example, during the protest stage children outwardly do not appear happy to see their parents (Fig. 38-3). In fact, they may even cry louder. If they are depressed, they may reject their parents or begin to protest again. Often they cling to their parents in an effort to ensure their continued presence. Consequently such reactions may be regarded as “disturbing” the child’s adjustment to the new surroundings. If the separation has progressed to the phase of detachment, children respond no differently to their parents than they would to any other person.

Such reactions are distressing to parents, who are unaware of their meaning. If parents are regarded as intruders, they see their absence as “beneficial” to the child’s adjustment and recovery. They may respond to the child’s behavior by staying for only short periods, visiting less frequently, or deceiving the child when it is time to leave. The result is a destructive cycle of misunderstanding and unmet needs.

Early Childhood

Separation anxiety is the greatest stress imposed by hospitalization during early childhood. If separation is avoided, young children have a tremendous capacity to withstand any other stress. During this age period the typical reactions just described are seen. However, children in the toddler stage demonstrate more goal-directed behaviors. For example, they may plead with the parents to stay and physically try to keep the parents with them or try to find parents who have left. They may demonstrate displeasure on the parents’ return or departure by having temper tantrums; refusing to comply with the usual routines of mealtime, bedtime, or toileting; or regressing to more primitive levels of development. However, temper tantrums, bed-wetting, or other behaviors may also be expressions of anger, a physiologic response to stress, or symptoms of illness.

Because preschoolers are more secure interpersonally than toddlers, they can tolerate brief periods of separation from their parents and are more inclined to develop substitute trust in other significant adults. However, the stress of illness usually renders preschoolers less able to cope with separation; as a result they manifest many of the stage behaviors of separation anxiety, although in general the protest behaviors are more subtle and passive than those seen in younger children. Preschoolers may demonstrate separation anxiety by refusing to eat, experiencing difficulty in sleeping, crying quietly for their parents, continually asking when the parents will visit, or withdrawing from others. They may express anger indirectly by breaking their toys, hitting other children, or refusing to cooperate during usual self-care activities. Nurses need to be sensitive to these less obvious signs of separation anxiety to intervene appropriately.

Later Childhood and Adolescence

Previous research, usually based on adult recollections, indicated that the family does not play as important a role for school-age children as it does during the toddler and preschool years. However, in a recent study that asked children about their fears when hospitalized, children listed their greatest fears regarding hospitalization as being separated from family and friends, being in an unfamiliar environment, receiving investigations or treatments, and losing self-determination or choices (Coyne, 2006). In a qualitative study of children ages 5 to 9 years, children described hospitalization in stories that focused on being alone and feeling scared, angry, or sad. These children also described the need for protection and companionship while hospitalized (Wilson, Megel, Enenbach, et al., 2010).

Although school-age children are better able to cope with separation in general, the stress and often accompanying regression imposed by illness or hospitalization may increase their need for parental security and guidance. This is particularly true for young school-age children who have only recently left the safety of the home and are struggling with the crisis of school adjustment. Middle and late school-age children may react more to the separation from their usual activities and peers than to the absence of their parents. These children have a high level of physical and mental activity that frequently finds no suitable outlets in the hospital environment; and, even when they dislike school, they admit to missing its routine and worry that they will not be able to compete or “fit in” with their classmates when they return. Feelings of loneliness, boredom, isolation, and depression are common. Such reactions may occur more as a result of separation than of concern over the illness, treatment, or hospital setting.

School-age children may need and desire parental guidance or support from other adult figures but may be unable or unwilling to ask for it. Because the goal of attaining independence is so important to them, they are reluctant to seek help directly, fearing that they will appear weak, childish, or dependent. Cultural expectations to “act like a man” or “be brave and strong” weigh heavily on these children, especially boys, who tend to react to stress with stoicism, withdrawal, or passive acceptance. Often the need to express hostile, angry, or other negative feelings finds outlets in alternate ways such as irritability and aggression toward parents, withdrawal from hospital personnel, inability to relate to peers, rejection of siblings, or subsequent behavioral problems in school.

For adolescents separation from home and parents may produce varied emotions, ranging from difficulty coping to welcoming the event. However, loss of peer-group contact may pose a severe emotional threat because of loss of group status, inability to exert group control or leadership, and loss of group acceptance. Deviations within peer groups are poorly tolerated; and, although group members may express concern for the adolescent’s illness or need for hospitalization, they continue their group activities, quickly filling the gap of the absent member. During the temporary separation from their usual group, ill adolescents may benefit from group associations with other hospitalized teens.

Effects of Hospitalization on the Child

Children may react to the stresses of hospitalization before admission, during hospitalization, and after discharge. A child’s concept of illness is even more important than age and intellectual maturity in predicting the level of anxiety before hospitalization (Clatworthy, Simon, and Tiedeman, 1999). This may or may not be affected by the duration of the condition or prior hospitalizations; therefore nurses should avoid overestimating the illness concepts of children with prior medical experience (Box 38-2).

Individual Risk Factors

A number of risk factors make certain children more vulnerable than others to the stresses of hospitalization (Box 38-3). Rural children may exhibit significantly greater degrees of psychologic upset than urban children, possibly because urban children have opportunities to become familiar with a local hospital. Because separation is such an important issue surrounding hospitalization for young children, children who are active and strong willed tend to fare better when hospitalized than youngsters who are passive. Consequently nurses should be alert to children who passively accept all changes and requests; these children may need more support than “oppositional” children.

The stressors of hospitalization may cause young children to experience short- and long-term negative outcomes. Adverse outcomes may be related to the length and number of admissions, multiple invasive procedures, and the parents’ anxiety. Common responses include regression, separation anxiety, apathy, fears, and sleeping disturbances, especially for children younger than 7 years of age (Melnyk, 2000). Supportive practices such as family-centered care and frequent family visiting may lessen the detrimental effects of such admissions. Nurses should attempt to identify children at risk for poor coping strategies (Small, 2002).

Changes in the Pediatric Population

The pediatric population in hospitals has changed dramatically over the past two decades. With a growing trend toward shortened hospital stays and outpatient surgery, a greater percentage of the children hospitalized today have more serious and complex problems than those hospitalized in the past. Many of these children are fragile newborns and children with severe injuries or disabilities who have survived because of major technologic advances yet have been left with chronic or disabling conditions that require frequent and lengthy hospital stays. The nature of their conditions increases the likelihood that they will experience more invasive and traumatic procedures while they are hospitalized. These factors make them more vulnerable to the emotional consequences of hospitalization and result in their needs being significantly different from those of the short-term patients of the past (see Chapter 36 for further discussion on children with special needs). Most of these children are infants and toddlers, the age-group most vulnerable to the effects of hospitalization.

Concern in recent years has focused on the increasing length of hospitalization because of complex medical and nursing care, elusive diagnoses, and complicated psychosocial issues. Without special attention devoted to meeting children’s psychosocial and developmental needs in the hospital environment, the detrimental consequences of prolonged hospitalization may be severe.

Stressors and Reactions of the Family of the Child Who is Hospitalized

Parental Reactions

The crisis of childhood illness and hospitalization affects every member of the family. Parents’ reactions to illness in their child depend on a variety of factors. Although one cannot predict which factors are most likely to influence their response, a number of variables have been identified (Box 38-4).

Recent research has identified common themes among parents whose children were hospitalized, including feeling an overall sense of helplessness, questioning the skills of staff, accepting the reality of hospitalization, needing to have information explained in simple language, dealing with fear, coping with uncertainty, and seeking reassurance from caregivers. This reassurance involves staff being compassionate, expressing concern for the child, and attending to detail in the child’s care (Stranton, 2004).

Sibling Reactions

Siblings’ reactions to a sister’s or brother’s illness or hospitalization are discussed in Chapter 36 and differ little when a child becomes temporarily ill. Siblings experience loneliness, fear, worry, anger, resentment, jealousy, and guilt. Illness may also result in children’s loss of status within their family or social group. Various factors have been identified that influence the effects of the child’s hospitalization on siblings. Although these factors are similar to those seen when a child has a chronic illness, Craft (1993) reported that the following factors regarding siblings are related specifically to the hospital experience and increase the effects on the sibling:

Parents are often unaware of the number of effects that siblings experience during the sick child’s hospitalization and the benefit of simple interventions to minimize these effects such as explicit explanations about the illness and provisions for the siblings to remain at home. Sibling visitation is usually beneficial to the patient, sibling, and parent but should be evaluated on an individual basis. Siblings should be prepared for the visit with developmentally appropriate information and be given the opportunity to ask questions.

Nursing Care of the Child Who is Hospitalized

Preparation for Hospitalization

Children and families require individualized care to minimize the potential negative effects of hospitalization. One method that can decrease negative feelings and fear in children is preparation for hospitalization. The rationale for preparing children for the hospital experience and related procedures is based on the principle that a fear of the unknown (fantasy) exceeds fear of the known. When children do not have paralyzing fear with which to cope, they are able to direct their energies toward dealing with the other unavoidable stresses of hospitalization.

Although preparation for hospitalization is a common practice, there is no universal standard or program for all settings. The preparation process may be elaborate with tours, puppet shows, and playtime with miniature hospital equipment; it may involve the use of books, videos, or films; or it may be limited to a brief description of the major aspects of any hospital stay. No consensus exists on the timing of preparation. Some authorities recommend preparing children 4 to 7 years of age about 1 week in advance so they can assimilate the information and ask questions. For older children the time may be longer. However, for young children who may begin to fantasize about what they observed, 1 or 2 days before admission is sufficient time for anticipatory preparation. The length of the session should be tailored to the child’s attention span (i.e., the younger the child, the shorter the program). The optimal approach is one that is individualized for each child and family.

Regardless of the specific type of program, all children, even those who have been hospitalized before, benefit from an introduction to the environment and routine of the unit. Sometimes it is not possible to prepare children and families for hospitalization such as in the event of sudden, acute illness. However, care should be taken to orient them to hospital routines, establish expectations, and allow for questions.

A collaborative effort among the nurse, child life specialist, and other members of the child’s health care team helps ensure the best possible hospital experience for the child and family.

Admission Assessment

The nursing admission history refers to a systematic collection of data about the child and family that allows the nurse to plan individualized care. The nursing admission history presented in Box 38-5 is organized according to the Functional Health Patterns outlined by Gordon (2002) (see Nursing Diagnosis, Chapter 26). This assessment framework is a guideline for formulating nursing diagnoses. One of the main purposes of the history is to assess the child’s usual health habits at home to promote a more normal environment in the hospital. Therefore questions related to activities of daily living in the nutritional-metabolic, elimination, sleep-rest, and activity-exercise patterns are a major part of the assessment. The questions found under the health perception–health management pattern are directed toward evaluation of the child’s preparation for hospitalization and are key factors in determining whether additional preparation is needed. The questions included in the self-perception–self-concept and role-relationship patterns offer insight into the child’s potential reaction to hospitalization, especially in terms of separation.

Box 38-5   Nursing Admission History According to Functional Health Patterns*

Health Perception–Health Management Pattern

• Why has your child been admitted?

• How has your child’s general health been?

• What does your child know about this hospitalization?

• Has your child ever been in the hospital before?

• How was that hospital experience?

• What things were important to you and your child during that hospitalization? How can we be most helpful now?

• What medications does your child take at home?

• Which, if any, forms of complementary medicine practices are being used?

Nutrition–Metabolic Pattern

• What is the family’s usual mealtime?

• Do family members eat together or at separate times?

• What are your child’s favorite foods, beverages, and snacks?

• Which foods and beverages does your child dislike?

• What are your child’s feeding habits (bottle, cup, spoon, eats by self, needs assistance, any special devices)?

• How does your child like the food served (warmed, cold, one item at a time)?

• How would you describe your child’s usual appetite (hearty eater, picky eater)?

• Has being sick affected your child’s appetite? In what ways?

• Are there any known or suspected food allergies?

• Is your child on a special diet?

• Are there any feeding problems (excessive fussiness, spitting up, colic); any dental or gum problems that affect feeding?

Sleep-Rest Pattern

• What is your child’s usual hour of sleep and awakening?

• What is your child’s schedule for naps; length of naps?

• Is there a special routine before sleeping (bottle, drink of water, bedtime story, night-light, favorite blanket or toy, prayers)?

• Is there a special routine during sleep time such as waking to go to the bathroom?

• In which type of bed does your child sleep?

• Does your child have a separate room or share a room; if shares, with whom?

• Does your child sleep with someone or alone (e.g., sibling, parent, other person)?

• What is your child’s favorite sleeping position?

• Are there any sleeping problems (falling asleep, waking during night, nightmares, sleep walking)?

• Are there any problems in awakening and getting ready in the morning?

Activity-Exercise Pattern

• What is your child’s schedule during the day (preschool, day care center, regular school, extracurricular activities)?

• What are your child’s favorite activities or toys (both active and quiet interests)?

• What is your child’s usual television-viewing schedule at home?

• What are your child’s favorite programs?

• Are there any television restrictions?

• Does your child have any illness or disabilities that limit activity? If so, how?

• What are your child’s usual habits and schedule for bathing (bath in tub or shower, sponge bath, shampoo)?

• What are your child’s dental habits (brushing, flossing, fluoride supplements or rinses, favorite toothpaste); schedule of daily dental care?

• Does your child need help with dressing or grooming such as hair combing?

• Are there any problems with these patterns (dislike of or refusal to bathe, shampoo hair, or brush teeth)?

• Are there special devices that your child requires help in managing (eyeglasses, contact lenses, hearing aid, orthodontic appliances, artificial elimination appliances, orthopedic devices)?

• Note: Use the following code to assess functional self-care level for feeding, bathing and hygiene, dressing and grooming, toileting:

Role-Relationship Pattern

• Does your child have a favorite nickname?

• What are the names of other family members or others who live in the home (relatives, friends, pets)?

• Who usually takes care of your child during the day and night (especially if other than parent such as babysitter, relative)?

• What are the parents’ occupations and work schedules?

• Are there any special family considerations (adoption, foster child, stepparent, divorce, single parent)?

• Have any major changes in the family occurred lately (death, divorce, separation, birth of a sibling, loss of a job, financial strain, mother beginning a career, other)? Describe child’s reaction.

• Who are your child’s play companions or social groups (peers, younger or older children, adults, or prefers to be alone)?

• Do things generally go well for your child in school or with friends?

• Does your child have “security” objects at home (pacifier, bottle, blanket, stuffed animal or doll)? Did you bring any of these to the hospital?

• How do you handle discipline problems at home? Are these methods always effective?

• Does your child have any condition that interferes with communication? If so, what are your suggestions for communicating with your child?

• Will your child’s hospitalization affect the family’s financial support or care of other family members (e.g., other children)?

• What concerns do you have about your child’s illness and hospitalization?

• Who will be staying with your child while hospitalized?

• How can we contact you or another close family member outside of the hospital?

Sexuality-Reproductive Pattern

(Answer questions that apply to your child’s age-group.)

• Has your child begun puberty (developing physical sexual characteristics, menstruation)? Have you or your child had any concerns?

• Does your daughter know how to do breast self-examination?

• Does your son know how to do testicular self-examination?

• How have you approached topics of sexuality with your child?

• Do you think you might need some help with some topics?

• Has your child’s illness affected the way he or she feels about being a boy or a girl? If so, how?

• Do you have any concerns with behaviors in your child such as masturbation, asking many questions or talking about sex, not respecting others’ privacy, or wanting too much privacy?

• Initiate a conversation about an adolescent’s sexual concerns with open-ended to more direct questions, using the terms “friends” or “partners” rather than “girlfriend” or “boyfriend”:

*The focus of the admission history is the child’s psychosocial environment. Most of the questions are worded in terms of parental responses. Depending on the child’s age, they should be addressed directly to the child when appropriate.

The nurse should also inquire about the use of any medications at home, including complementary medicine practices (Box 38-6). In a study of children with cancer, 42% had used alternative or complementary therapies simultaneously with or after conventional treatments (Fernandez, Pyesmany, and Stutzer, 1999). It is important that the use of any herbal or complementary therapy be noted in a preoperative assessment because of possible anesthesia or surgical complications related to herbal products (Flanagan, 2001) (see Critical Thinking Case Study).

Sep 16, 2016 | Posted by in NURSING | Comments Off on Family-Centered Care of the Child During Illness and Hospitalization

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