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Our new stneitap in the UCC (unique culture complex) were obviously different from us. We thought we understood the language they used, but we were confused later by their words and actions. At times, these new stneitap were easy to work with, and everyday activities with ffats proceeded smoothly, but sometimes, and for no reason apparent to us, they refused to acknowledge the presence of individual ffats, resisted both eye contact and verbal exchange with the ffats, and occasionally behaved disruptively. For example, when the elderly white-coated rotcod entered one stneitap’s healing cubicle, the stneitap responded with a highly ritualized, greased-palm hand gesture that plainly frightened the rotcod. One of the male stneitap was very loud and continually turned his portable entertainment and communication screen up to a high volume. He occasionally expressed to the brightly decorated vestal maidens who bustled about him that he was interested to learn of their fertility status. Some days this stneitap would cry non-stop for his homeland, and nothing that his family members or the other rotcod and vestal maidens did or said to him would make him stop. The other male stneitap was both deaf and near-mute and so could not acknowledge the presence of family members, rotcod, food servers, or vestal maidens. When requested to splash water over his body in the form of daily ablutions and to part with the white-colored shrouds that graced his sleeping pallet, he refused. He wanted to "talk tough" and to share his toughness by requesting that vestal maidens who served him slavishly grip his hand while he inserted a sacred white cloth into his mouth prior to the removal of a hygienic cotton armlet. The female stneitap, though seemingly much younger than the chief rotcod, was clearly the rotcod’s equal in power and status, for she shared a ritualized form of verbal banter with him that he, as befit someone of his rank, took tight-lipped and stoically, without comment. She persisted in questioning the arbitrary timing of the chief rotcod’s and vestal maidens’ highly ritualized, circular visit to her sleeping quarters precisely when she attempted to sleep. She questioned why vestal maidens were sent to her to apply the painful arm vice prior to the first showing of the sun. She regretted most of all why, upon being allowed to fall back to sleep, 2 hours later, she was peppered with questions about her feelings and stared at by the listeners and questioners who ringed her sleeping pallet.
What was going on with these patients, and why were they so difficult to understand and care for? One female patient seemed to sum up the situation nicely when she commented (about herself and her fellow patients, and edited for clarity): "We’re a pain in the ass if you don’t have a sense of humor, and we like to come out at night. We don’t like to wake up early, and we do like back rubs, cool toys, and trips out of the CCU [coronary care unit]."
TEENAGERS IN THE ADULT ICU
The nursing staff of the adult CCU at Oregon Health Sciences University had seen their patient census swell with adults who needed intravenous inotropic support while awaiting heart transplantation. At times, 5 of the 10 beds in the unit were occupied by transplant candidates. During the course of several months, two 14-year-old boys and one 20-year-old woman came to reside in the CCU while awaiting heart transplantation. Although the pediatric ICU was available, members of the pre-transplant cardiology team felt more comfortable placing these patients in the adult CCU, for 2 main reasons: (1) the transplant candidates (adults and teenagers) would thus all be together in the same unit, making it more convenient for the physician team, and (2) the nurses who staffed the adult CCU had greater cumulative experience in caring for patients who required inotropic support before transplantation than did the staff in the pediatric ICU.
Suddenly, one third of the patients in the CCU were adolescents. The nurses expressed their concerns to both management and the physician team about meeting the physiological, psychosocial, and emotional needs of this seemingly categorically different type of patient: ill adolescents. Other than their own parenting experiences, few of the nurses had any clinical training for dealing with children or adolescents as patients. Physicians allayed some of the nurses’ fears about physiological differences between, on the one hand, adolescents and children and, on the other hand, adults. Dosage adjustments and differences in metabolism would still be handled by the pharmacy and other medical staff members.
Nevertheless, myriad other concerns remained. Psychosocial concerns arose, including those related to budding sexuality and the need for both peer contact and isolation, and emotional issues related to developmental milestones and coping abilities of adolescents in general. Being well beyond and outside the knowledge base of adult critical care nurses, these kinds of psychosocial issues presented a new and sometimes disconcerting challenge to the nurses who cared for these patients.
It became obvious that the nurses needed information quickly to deal with this new population of seriously ill adolescents. Friction developed not only between staff members because of problems regarding the management of adolescents’ behavior and limit setting but also between patients and staff members because of personality clashes and disputes over issues of control. For example, when the teenagers "acted like teenagers," by "talking back" or by running throughout the unit, behaviors that are not safe or appropriate for ICU settings, some staff members, who expected the teenagers to behave more like adults, responded in a punitive, parental manner or with perhaps more emotion and anger than was appropriate or was generally used toward adult patients.
Each staff member viewed this complex, new situation through his or her own fully cultural, fully valid belief systems and experiences. Because they had not been trained specifically in relevant aspects of nursing or psychology of ill adolescents, staff members’ responses were often inconsistent, overly emotional, and in the eyes of their teenaged patients, bizarre and frustrating. For example, one nurse required a teenaged female patient to keep the curtain to the patient’s room open during visits by the man who fathered the patient’s child, so that "activity" (ie, sexual activity) could be observed, whereas other patients were not required to keep their curtains open during visits. In fact, one adult female patient often had her spouse stay overnight in her bed with her without encountering any such interference.
Although appropriate medical care and a fledgling plan emerged that dealt with the psychological and emotional care of ill adolescents, the main issue of effective coping strategies for both the staff and the adolescent patients remained unresolved. Members of both groups were presented with unfamiliar environments and had skills that were inadequate to manage culturally congruent care effectively. This situation raised a number of pertinent questions that I begin to address here and that I encourage others to take up more fully.
How do nurses who are experienced in dealing with mature adult patients adapt to the care of sick adolescents? What tools can be used to assist in this transition? What kinds of behavior can members of the dominant or mainstream culture (nurses and physicians, in this instance) reasonably expect from members of 2 "subcultures"—not just teenagers, but sick ones—when the members are placed in a new environment that is not prepared to deal with the teenagers’ specific needs? Answers to these questions are not easy to come by, for though the literature on adolescent responses to life-threatening illness per se is considerable,2–4 far fewer resources are available on strategies that would enable nurses to care for such patients in an adult ICU.5,6
ADOLESCENT VS ADULT CARE ISSUES
An adult ICU is structured to meet the needs of both the adult patients who inhabit it and the staff members who work with and for those patients. Members of both groups operate from the same general premise that is supposed to govern adult behavior, namely, that mature discussion will facilitate acceptable systems that will enable the achievement of the goals of both parties. The interests of all parties are important, and the patients’ needs are supposed to come first, but sometimes the needs of the hospital milieu supersede those needs (eg, that no one may smoke around an oxygen tank). Throw a dash of adolescent egocentrism7 and impetuousness into the formula, however, and well-functioning systems can falter. What should a nurse do when a patient refuses to wake up for morning rounds or squirts the attending physician with a water gun or Silly String, which, when confiscated, gets replaced with an even larger gun or bigger canister of Silly String?
Literature on the behavior of adolescent candidates for heart transplantation is surprisingly sparse. To provide better care guidelines for this unique subculture of patients,2,3,5,6,8–13 we must augment this scant knowledge by conducting research on seriously ill children and adolescents and by drawing upon our experience with organ transplantation in adults. Although each person copes with life-threatening illness in his or her own way, adults experience certain predictable transitory stages while developing an effective coping strategy.
Behavioral manifestations of coping can be either adaptive or maladaptive8 and can either resolve a problem or lead to further stress. With adolescents, for example, such behavior might not be recognized immediately as "the outward manifestation of coping." Behavior might appear inappropriate or even alien to staff members who are unfamiliar with adolescents’ developmental issues in the context of serious illness and hospitalization. This lack of familiarity can be more problematic when patients are in late adolescence and when expectations of "adult behavior" are higher.
Waiting for a transplant is the most stressful and strenuous phase of transplantation.14,15 In our unit, staff members knew how to assist adults with coping, but teenagers waiting for transplants presented new and heightened challenges as indicated by the conflict that developed on the unit, such as when teenaged patients flatly refused to bathe or to eat.
Stuber10 has noted 4 major differences in the ways in which adults and children (not specifically adolescents) who are transplant candidates face psychological issues. First, the role of the family is inseparable from the issue of the child’s care. Second, the context of the illness plays a role in the perception of patients who are children. For example, ill children are often viewed as innocent sufferers by others, a practice that tends to create sympathy and can lead to developmental delays or lack of healthy independent self-concept. Third, age and developmental issues affect decision making. Fourth, among teenagers, the long-term effects of transplantation on such care-related dynamics as compliance and distortion of body image, just from the psychosocial perspective alone, are fraught with crisis.10
In our unit, Stuber’s first 3 factors affected everyday nursing care, whereas the fourth factor became a major concern for members of the medical team. The developmentally appropriate phase of adolescent rebellion can be life threatening when organ transplantation is at stake.2,3,10 When faced with peer pressure or the perception of a distorted body image after transplantation, teenagers do not always prioritize life-threatening medical issues, for example, by consistently taking antirejection medications.
One teenager, previously cared for by members of the medical team, had stopped taking steroids because they made her face "fat"—she wanted to attend the upcoming prom and look beautiful, not fat. She went into rejection (and nearly died) because of her decision, as teenagers apparently do far more frequently than do adults. One of our 2 male patients actually died several months after receiving a transplant, probably because he had ceased taking his antirejection medication.
According to several of the transplant cardiologists we consulted, and in terms of the likely effectiveness of transplantation and the medication-taking regimen after transplantation, family support, defined as the presence of 2 parents who live with the transplant recipient, is the biggest predictor of success after transplantation. Admittedly, in terms of what limited research has been done on the topic, for Nacirema this definition of family support is both culture bound (definitions of family support vary by family structure from culture to culture) and evidence based (living with 2 parents is better than living with 1 parent). Therefore, further research is needed to test empirically the effectiveness of alternative family structure and support in terms of morbidity and mortality in teenagers who receive heart transplants.
One of our teenaged male patients had parents who were amicably divorced and were involved in his care, but his father lived thousands of miles away. The other male patient lived with his mother and sisters and had strong ties with them, but had no contact with his father, and the family moved frequently. Our female patient became an emancipated minor at the age of 17 and had legal guardianship of her siblings. She had sporadic contact with a grandmother and with an adult couple who had taken an aunt/uncle role in her life. She was fiercely independent (ie, uncommunicative) about her background, lifestyle, and residence patterns outside the hospital but still remarkably dependent inside it.
Medical staff made the decision to accept these teenagers as transplant candidates, though the staff knew that statistically the odds of survival were less than in teenaged candidates who lived with both parents. To increase the likelihood of these adolescents’ survival, we needed to address psychosocial and emotional issues as well as medical concerns during the waiting period before transplantation. Our interventions had to be based on sound theory of adolescent development in the context of life-threatening illness.
THE DEVELOPMENTAL STAGES OF ADOLESCENCE
Recent conventional Western ideas of adolescent development are based on the "sturm und drang" concept of puberty, the belief that turmoil during adolescence is normal, universal, and inevitable, as set forth by G. Stanley Hall in 1904.2,4 Although Hall’s work was neither evidence based then nor supported today by empirical research, it continues to influence current beliefs. In addition, with the publication in 1950 of Erik Erikson’s "lifespan" model of "stages of development," more focus began to be placed on psychosocial tasks, particularly those expected in adolescence. Erikson’s model further shifted attention toward specific themes that characterize each developmental stage, such as identity, autonomy, achievement, and intimacy.16 Subsequent researchers expanded his model by studying members of other subcultures, including "minority" teenagers and women, and by more finely targeting the stages of adolescence itself.2
Current theories stress that adolescent development is a continuous, relatively smooth transition for most teenagers.2,4,7 However, adolescence covers a broad range of years and developmental issues. Experts advocate dividing adolescence into 3 psychosocial phases: the early stage of ages 11 through 14; the middle stage of ages 15 through 17; and the late stage, which begins at age 17 or 18 or so and extends to about age 22, at which point the adolescent enters the adult world of work and responsibility2,7,17,18 (Table 1
).
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"Normative" psychosocial influences on development do not typically include the chance occurrence of illness,2,17 which can increase an already heavy developmental burden. The developmental periods of adolescence involve age-related transitions through school and social norms that describe relationships to others and toward work. It is necessary to understand the normative development of the 3 stages of adolescence in order to place the study of nonnormative hospitalized teenagers in proper context.
The impact of nonnormative influences such as hospitalization and a life-threatening condition make adolescent behavior more confusing. An illness can upset the progression toward the fulfillment of developmental tasks. For instance, how does a sick male patient in early or middle adolescence negotiate autonomy issues when his parents or the nursing staff do not let him make choices? Our 2 male teenaged patients were 14 years old, and their behavior supported research findings that ill teenagers often revert to more childlike behaviors, especially in stressful situations.2,3,4,17 These 2 adolescents refused to bathe or get dressed, responded with tears when a blood sample had to be obtained, but acted with sexual bravado when younger female nurses were caring for them. Do staff members know that such behavior is normative for ill adolescents? A teenager struggling with illness might have lowered self-esteem, a state that can affect the teenager’s self-concept, motivational abilities, peer relations, and, ultimately, level of psychological adaptation.3
Those who care for hospitalized teenagers must consider and design an open forum for dealing with these developmental issues and coping mechanisms. Nursing staff trained to care for adults need to learn about these concepts in order to develop general principles governing adolescent care in an adult ICU. A plan that identifies any specific medical requirements or specific developmental needs and potential behavioral reactions must be implemented.6,19 Such a plan will maintain understandable requirements of medical control while safeguarding patients’ autonomy, allowing achievement of developmental tasks, realizing educational and recreational potential, and furthering patients’ and parents’ understanding and adaptation.3,4
Adele Hoffman3 has developed a 5-stage plan to manage the early onset of illness in adolescents: (1) engagement, (2) the care contract, (3) short-term adaptation, (4) intermediate adaptation, and (5) long-term adaptation. Her plan covers the entire transplantation process, from initial diagnosis to adaptation after receipt of the transplant, and meets the previously stated goals by acknowledging the needs of teenaged patients. Regression, resistance to the assumption of responsibility, and anger are expected, and the responses of staff members must be flexible and include compromise when possible. She suggests consultation with a mental health provider and continued involvement of the primary provider to ensure that developmental needs are not ignored.3
STAFF REACTIONS
In our unit, and for several different reasons, some staff members were uncomfortable working with sick teenagers. Some professed an original choice to work with older adults who "had lived a good life," versus caring for ill teenagers or children, whom they perceived to be "innocent sufferers." Others did not want to confront annoying behaviors of teenagers or the overinvolvement of the teenagers’ family members and resented the constant presence of family members in the patients’ rooms. Yet other nurses were fearful of their perceived lack of knowledge of the nursing needs of adolescents.6 Some maintained an emotional distance from the teenagers, whereas others developed close bonds. Still others, particularly staff members who worked the day shift, tended to project their own, sometimes authoritarian, parenting styles into the work setting. These reactions are hardly surprising; staff members expressed anxiety, discomfort, and reluctance to care for this new population of ill adolescents.12,20 The lighter work load and fewer interruptions and distractions that characterized the night shift, however, offered more opportunities for flexibility, for example, regarding nighttime eating and recreation.
THE CULTURAL PERSPECTIVE
Another perspective from which to view the reactions of staff members comes from nursing literature on the theory of culturally congruent care.21–23 The teenagers represented a subculture of sorts, a group distinct from others within the same culture or society. The dominant culture, that of adults in the United States, and more specifically, healthcare providers, has its own set of values that dictate the way ICUs operate. For instance, an ICU normally has restrictions on visiting, desired or minimum activity levels, and dietary options. ICU nurses are generally detail oriented, independent, and highly motivated care providers. They are accustomed to being in control of every aspect of their patients’ care. ICU patients, on the other hand, are usually critically ill and have limited physical abilities. Our teenaged patients, however, did not fit the typical ICU patient mold, and this difference challenged the ICU milieu, the subculture of its rules and regulations within the dominant culture of the entire hospital facility. These teenagers had sound physical abilities but far less emotional/developmental ability to make appropriate decisions about their daily activities and their dietary and therapeutic needs. At the same time, they were experiencing the quite normal strains of becoming autonomous thinkers.
Some of the stress experienced by staff members and teenagers can be viewed in cross-cultural terms. However, as anthropologists before Miner and certainly since have shown all too compellingly, members of one culture, usually the subordinate culture, typically see and understand the perspective of their antagonists more than vice versa.
For example, our female teenager’s way of building trust—an absolute necessity for her—was to connect with staff members through humor and practical joking. Specifically, she wanted to know that the physician thought of her as an important individual, to be assured that the physician would make good decisions, lifesaving at times, on her behalf. In her words, "If I die, they’ll care." She used her own brand of humor with everyone, and learned which staff members could "handle it" and which could not. She looked for the ability "to bend a little" as a yardstick by which to measure her caregivers. She resented greatly anyone who acted, in her opinion, "like God." When she was directed in a particular way by such a provider she "upped the ante," and her jokes became more frequent and represented more of a challenge to that provider’s control, as for example, when she liberally applied petroleum jelly to her hand before shaking the hand of her physician. She enlisted other staff to share in the jokes directed at such providers; this practice led directly to staff "splitting" (seefollowing section).
In retrospect, this patient knew then how serious was her prognosis. She was not being merely irreverent but rather needed somehow—and her choice was through practical joking—to "connect with" her providers.
However articulate this adolescent may sound, neither of the other 2 adolescent patients, at earlier stages of development, came even close—and she did not always articulate these thoughts at the time. Most teenagers in the early and middle stages of development, by contrast, operate from within a model that does not always include how to account for the serious nature of their illnesses. For example, mortality has a different, less serious meaning to a 14-year-old than to an adult.
Thus, members of neither group—staff or patients—were able easily to communicate effectively with each other, "across the divide." By recognizing the existence of this "clash" and viewing it in more cultural, not necessarily generational or individual psychological, terms, it becomes easier to understand why conflict was occurring and thus to propose workable, effective solutions.
To understand the more specifically cultural aspects of these clashes, Blenner23 theorized 3 categories of healthcare providers. The "culturally unaware" providers thought that the teenagers should be treated as any other adult patient is treated. The "culturally nontolerant" providers thought that the teenagers would just have to adjust because the teenagers were in the adult unit now, and finally, the "culturally sensitive" providers acknowledged and worked within the teenagers’ worldview.23
For example, battle lines were drawn around the issue of bedtime. Adolescents normally keep different hours than do adults, preferring to stay up, and wake up, later. Some staff members saw no problem with having the teenagers make their own bedtime decisions, but some staff members wanted stricter rules for these patients, and others saw the essential "grayness" of the dilemma. Adult patients were treated differently, of course; when adult patients chose to stay up late, staff members did not object.
CONFLICT AMONG STAFF MEMBERS
The one overwhelming consistency in staff members’ attitude toward care of these adolescents was that staff members’ opinions were strong, emotionally charged, and too variable to be perceived as consistent by patients.2 Coordinated care became a challenge. Staff members at times resorted to personal jabs at each other, to criticisms of the parenting styles of both other staff members and patients’ parents, and to generally maladaptive coping strategies.
Strong disagreements were evident to all parties and were an early indication of splitting.8 Defined as behavior by patients that generates intense conflict among and between professional staff, splitting is a defense mechanism that occurs automatically, outside a person’s conscious awareness, in response to a perceived psychological threat. Splitting takes the form of a sort of divide-and-conquer mentality.
Teenagers and their families quickly realized which staff members they liked better than others, and conflict ensued. In effect, we had been split by normal adolescent behavior, but because the behavior was covert to both patients and staff members alike, the damage occurred before the process could be recognized. The staff was polarized along several predictable lines. Workers on the night shift were considered too lenient, whereas their day-shift counterparts were considered too punitive. Conflict that has reached this stage is difficult to resolve and although the staff did reach consensus on workable modifications of the patient protocol, feelings remained tense.
PERSONAL INVOLVEMENT
Another source of interstaff conflict was the issue of personal involvement with the teenaged patients. Some staff members were criticized by colleagues for projecting the members’ own parenting style into the work setting, whereas others thought it was inappropriate for staff members to be or to appear to be too friendly with the teenaged patients. This issue continued to be a point of contention among staff members long after the teenagers had successfully undergone heart transplantation. Trust and rapport, however, built over time between an adolescent patient and a staff member, can counter anxiety in transplant candidates. The identification of areas of interest common to both patient and staff member and the sharing with other staff members of the patient’s unique accomplishments can also enhance the dignity of the patient and his or her relationship with the staff.20,24 Interestingly, but problematically, in some of the transplant literature,24,25 the theme of "befriending" rather than regarding the teenagers as patients is stressed. Because transplant candidates can have prolonged hospitalizations, the likelihood of increased misunderstanding and conflict is greater. A staff member who has gradually developed a trusting relationship with a teenaged patient can act as an advocate or mediator if necessary.25
Nursing literature also supports the concept of "therapeutic use of self" as a strategy to provide psychological support to hospitalized adolescents.13 The development of a relationship between a staff member and a teenaged patient can help the teenager feel more accepted, a situation that can lead to an improved sense of well-being and comfort. Teenagers begin to view such nurses as friends; to the teenagers, friendship conveys acceptance and more committed care. Although the friendship might not extend beyond the hospital or fit into an adult’s definition of friendship, it is nevertheless a vital stabilizing force for isolated and frightened adolescents.
Because of the commonality they share, it can sometimes be easier for some transplant patients to receive emotional and psychological support from other patients or staff than from family members, especially if the family system is dysfunctional.11 The teenagers in our unit enjoyed group breakfasts that some staff members arranged. Adult and teenaged patients, along with nursing staff, worked together to cook simple meals for everyone. This process provided a comforting sense of community that the teenagers clearly wanted. Several of the teenagers also enjoyed eating late-night snacks with the night-shift nurses. This activity allowed the teenagers to spend time with the nurses as friends, instead of patient care providers. The teenaged patients also reported having better appetites late at night, again, typical adolescent behavior, so the activity also served to improve their energy intake (often a source of conflict between patients and providers).
For our female teenager, some staff members served as surrogate family members, because of her lack of connectedness to her biological family. Several staff members visited with her on their days off to do activities that could not be done during work hours, such as watching movies, going for short wheelchair rides in the hospital and courtyard, and simply "hanging out together." The teenager reported that she behaved better and felt happier when nurses she liked were assigned to care for her. She added, "Happy patients live longer than depressed ones."
PATIENT-PATIENT BOUNDARIES: COMMON STRUGGLE OR COMPETITION?
Like readers who were puzzled when they first encountered the Nacirema, the adolescents were strangers in a frightening, seemingly bizarre adult environment. Two were dealing with an illness of new onset, and the third had no adult family members for support. Such issues are difficult enough for adults to master, let alone teenagers who are striving to reach maturity. Personality also plays a role; different persons desire different levels of connectedness. Once again, this difference raises a number of perplexing but critical questions. Does the presence of other transplant candidates help or hinder the psychosocial needs of each candidate? Does it matter that half of those waiting are teenagers? Awareness among the adult patients in the unit was heightened when more than 1 teenager was waiting for heart transplantation. Adult patients showed great concern for the teenaged patient and frequently asked about the teenagers’ conditions, especially when any of the teenagers was in critical condition.
For heart transplant candidates, patient-to-patient relationships can be precarious, and feelings can range from mutual support to guilt to jealousy.24 The sense of a common struggle to survive can be therapeutic, but it can also be problematic when scarce organs are at stake and patients think that their "psychological state" is being monitored by the staff as a selection criterion. Candidates may hesitate to discuss feelings of competition or guilt that can occur when one candidate receives "a new heart" and others continue to wait. In a combined adult-adolescent unit, these feelings might be exaggerated; the belief that "the young should be saved first" is widely held.24
Although some staff members thought that the presence of teenaged patients was disruptive to the unit, the presence of the teenagers could also be considered therapeutic for some adult patients. In a conversation I had with an adult heart transplant candidate who was in the same unit as the teenagers (May 1998), the adult stated that she concentrated on the medical conditions of the teenagers who were in the unit as a way to take her mind off her own concerns. The benefit could also be reciprocal; the female teenaged patient reported that she followed instructions more often because she did not want to upset her adult roommate.
How did the teenagers feel about having other teenagers in the unit? Was it a source of comfort or distraction? Anecdotally, the answer is not clear-cut, and the literature does not address this issue very straightforwardly. The adolescents acted as might be expected; at times they were interested in visiting with each other and occasionally sharing meals, but at other times they refused offers of joint activities. In retrospect, the female teenager described the comfort she felt just knowing that the other 2 teenagers were in the unit, too. However, when one of the others had a severe medical crisis, she reported feeling overwhelmingly fearful and concerned for how her adult roommate would handle the other teenager’s impending death: "In spite of all that, I couldn’t imagine being there for that long if [the other teenagers] hadn’t been there; . . . having each other was the best thing for us."
The unspoken way that the transplant candidates dealt with competition was the same for adults and teenagers. Every one of them knew the others’ blood types, weight categories, and the length of time on the candidate list, and they all knew how the allocation system worked. Occasionally, 2 candidates were in the same eligibility category, the longest waiting time was acknowledged as the deciding factor. Staff members knew that more factors were involved in allocation decisions, but the patients’ version was a reasonable way for the patients to cope with emotions when they were not the "lucky" recipients of a new organ.
Use of gallows humor24 also decreased stress for both adult and teenaged candidates. Hope was higher around holidays because of the increase in traffic accidents and fatalities. One male teenaged patient was given a police scanner by an uncle so the teenager could follow accidents more closely, thereby anticipating the availability of a donor organ. Adult patients also verbalized increased hopefulness during holidays.
For the most part, staff did not witness much antagonism between the adolescent and adult populations of patients. Instead, the adults showed genuine concern for the well-being of the teenagers. Although the teenagers were occasionally inconsiderate and self-centered, they were neither selfish nor malicious.2,4,7 In light of Miner’s initial depiction of the Nacirema, gallows humor appears morbid and bizarre, but is in fact a remarkably adaptive form of coping.
INTERVENTIONS
Physicians on the staff provided efficient training on the different physiological functioning and needs of adolescent versus adult candidates for heart transplantation. We had few difficulties in incorporating these relatively minor differences into practice. The challenge remained, however, with regard to psychosocial, emotional, and behavioral issues. In our unit, the situation had reached crisis level, and a physician who specialized in adolescent medicine provided several in-service training sessions for nurses in an effort to minimize and heal the damage that had occurred and to assist in proactive, interventionist problem solving.
The new information was relevant and necessary, and it helped staff members understand some of the core issues, but it did not resolve the interstaff conflicts, because considerable damage had ensued from the weeks of conflict. Already highly emotional opinions became even more firmly entrenched, and hearing from yet another "expert" did not automatically convince everyone to start afresh.
Crisis intervention can only deal with the problem at hand. Not all staff members attended, partly because of scheduling conflicts and partly because of personal choice. The requisite resources for addressing multiple individual concerns were inadequate.
Regardless of which of Blenner’s types they fit into, invested staff members collaborated to develop an effective, cohesive, 3-pronged interventionist management plan that consisted of components for which administration, staff, and patients alike would be responsible (Table 2). We attempted to secure the agreement of staff members to follow the plan, and we had a majority response. We allowed the teenagers to make lists of nurses they preferred, given the constraints of an ICU environment. Although this step was a recommendation from the adolescent specialist, it was not a popular one with all nurses. Some thought that it represented "giving in" to the teenagers, and these nurses disliked the idea of "favorites." Objectively, however, the unit functioned much more smoothly when the nurse-to-patient match was more to the teenagers’ liking.
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Many of these interventions were initiated on behalf of the teenagers but also benefitted other long-term transplant candidates. Routines were established for outings to the sky bridge, and meal tickets were available for once-daily use in the cafeteria. Evening and night staff tried to spend more time socializing, giving back rubs, or watching movies with the teenagers when the unit was calmer. Some staff rented new releases for the teenagers and let the teenagers play on the computers. On occasion, staff members cooked breakfast with the teenagers in the break room. Once, a professional chef volunteered to come in and cook with one of the male teenaged patients, who aspired to be a chef. Child-life therapists, the nonnurse specialists who plan activities that address emotional and developmental needs of hospitalized children and teenagers, came to see the teenagers as well.
According to one of the team physicians, the medical team made an unspoken decision to defer morning rounds for the teenagers until 10 AM, after the teenagers had awakened. Standing orders were written to leave them undisturbed from midnight until 6 AM so long as their medical conditions remained stable. The teenagers knew that a stable medical condition was a nonnegotiable condition.
Staff members remained divided on some of these interventions. Some thought the interventions were inappropriate and even dangerous, that staff members were giving in, or worse, that certain interventions regarding bathing, clothing, and eating were more properly parental, not nursing, responsibilities. However, everyone agreed that the behavior of the adolescents improved and that conflict on the whole was less after the interventions took effect.
ANALYSIS
What other interventions might we have used? We overlooked a vital source of information by not consulting with pediatric nurses and child-life specialists at our own institution in a timely manner. In-service training sessions conducted by them and by the adolescent specialist would have provided another perspective on the care of teenagers, perhaps a perspective that would have been more acceptable to some of our nursing staff. A core group of nurses trained in adolescent issues would also have been a great resource for the unit. The availability in the break room of nursing and psychosocial literature on adolescents could be used to educate staff on developmental issues. These issues and more are addressed in the nursing literature on the merging of adult and pediatric ICUs; guidelines for competency development must incorporate physical and psychosocial needs as well as interventionist strategies to achieve these goals.6,20
With any adolescent population, specific issues predictably arise; staff members must be current on allocation protocol,25 because teenagers are likely to detect inconsistencies in information provided. Although difficult to discuss, statistically poor outcomes must be addressed by the nurses; teenagers must accept some level of responsibility for their health before and after transplantation and should be encouraged to recognize more clearly the real level of risks. Staff members should be competent and comfortable in addressing teenagers’ sexuality and behavior because these issues are core developmental issues for this age group.2,3,17 A unit specially designed for hospitalized transplant candidates, perhaps with the option of dividing it into one unit for adults and another for adolescents as needed, would be ideal.
Any professional nurse might ask, Why was it so hard for the staff to adjust? After all, these teenagers were American, and many of the staff had daily contact with teenagers at home. One explanation can be found in the literature on nursing theories of "culture care."21,22 Although we were all from the same general region and culture, the subculture of adolescence has distinctly different values than does the adult, dominant culture. Also, the subculture of the adult ICU environment carries its own set of values. Both of these subcultures were taken by surprise when conflict occurred. In keeping with the Nacirema of Miner’s essay, what first appeared to be bizarre, unusual behavior in the adult ICU can now be revealed for what it was: an appropriate way for "strangers" (teenagers) to cope with being "in a strange land" (the adult ICU).
An understanding of cultural and social dimensions that influence the ways human care is expressed can enable nurses to integrate subcultural factors with institutional and individual factors to provide congruent care.21 We became engrossed in our personal agendas. By not acknowledging the importance of our own culture, our beliefs and their influence on our provision of nursing care, we became overwhelmingly egocentric and ethnocentric (the belief that one’s own self or culture is superior to all others, the standard by which all else is to be measured). No matter how balanced staff members were, problems would have developed; our inability to appropriately identify the basic needs of the teenaged patients was the core issue.
Nursing research on transplantation is weighted toward care of adult patients, and more specifically, toward the technical aspects of care. Research on the psychosocial aspects of care for adolescent patients, specifically those adolescents who are placed in an adult ICU, is a subspecialty that has received scant attention. Our experience with these teenaged patients taught us specific strategies to use to provide competent care, but we also experienced marked conflict in the process. I hope that our experience will help improve nurses’ preparedness in a way that will be useful for future adolescent patients and members of other unique, seemingly bizarre but actually quite normal, populations. +
Acknowledgments
I extend special thanks to the nursing and physician staff of the cardiac care unit and to the adolescent and adult patients and their families who provided the substance of this case study. I want to express my particular appreciation to Sabrina Feldman for her willingness to revisit these issues time and again. Laura Rogers encouraged me to share my ideas on this topic with the nursing profession. Maggi Gunnels kindly agreed to review the second draft of this essay. John Kallas worked out most of my technical, computer kinks, and Lawrence Hammar helped me edit the final draft. Thanks also go to my helpful anonymous reviewers and to the editorial staff of Critical Care Nurse.
References
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