Empowering adolescent with asthma to take control through adaptation

ORIGINAL ARTICLE

Empowering Adolescents With Ashna to Take Adaptation m I k

Ellen

B. Hennessy-Harstad,

RN,

CPN

A

‘~~;$d&scent$, these health care prti

,~f@&?~i~ cm &uce thecostof ‘~$eakh care and morbidity for these ,patients. ,p&nts. The purposes ofof this this atticfe attick are(a) to discuss adolescence’and powerlessness and (b) to identify nursing interventions that can empower adok?scents to adapt behaviors that will enhance the prevention of acute attacks and encourage preventive management of the disease process. The article will also discuss current nursing strategies used with adolescents to promote feelings of power and control of medications and treatment based on current national guidelines and the Roy adaptation model. J Pediatr Health Care. (1999). 73, 273-277.

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1 1 sthma is a chronic, costly, inflammatory disease that literally takes one’s breath away. Asthma inflames the bronchial linings, increases bronchial muscle contractions and bronchial mucous production, and leads to entrapment of air in the alveoli (Guyton & Hall, 1996). This disease can be debilitating and deadly. In the United States alone, 17 million persons are affected, of whom 5 million are children (Centers for Disease Control and Prevention, 1998). Asthma is the number one cause of school absenteeism (Yoos & McMullen, 1996). Asthma-related costs can be measured in terms of the amount of medications used, hospital care, urgent office visits, and missed days from work and school. Cost can also be described in terms of physical, social, and personal development. Adolescence is a time of unique physical and personal development. Usually considered a healthy time, adolescence is filled with rapid changes, new roles, and feelings of self-doubt. Thus adolescents can be at risk for perceptions of powerlessness (Carpenito, 1995). In addition, some adolescents with chronic diseases receive health care from professionals more attuned to the needs of children or families. These practitioners do not always have the knowledge or skills to address the concerns of adolescents (Gale, 1989). Clinical nurse specialists, family nurse practitioners, pediatric nurse practitioners, and office, school, and emergency department nurses can close the gap in care for these patients. Because these health care professionals are the front line in providing education, acute care, follow-up care, and advocacy, they can empower adolescents to take control through adaptation. The purposes of this article are to provide nurses with an overview of adolescence Ellen B. Hennessy-Ha&ad is a Staff Nurse and Pediatric Advance Life Supper? Instructor at St. Margaret Mercy Healthcare Center in Hammond, lnd, and a Master of Science in Nursing Candidate at Valparaiso University, Valparaiso, lnd. Reprint requests: Copyright

Ellen B. Hetnnessy-Harstad,

0 1999 by the National Association

0891.5245/99/$8.00

+0

RN, CPN, 826 W. 78th Ave, Merrillville, of Pediatric Nurse Associates

IN 46410

& Practitioners.

25/l/98662

273

ORIGINAL ARTICLE

Hennessy-Ha&ad

BOX 1 Case study A. J., a 1S-year-old, African American adolescent with a history of exercise-induced asthma, has returned to the office after exacerbation of symptoms during football practice. The severity of the symptoms has limited his practice and playing time. A. J’s mother accompanied him to try to identify other triggers and management options. The clinical nurse specialist (CNS) listened as A. J.‘s mother related that A. J. had not been using a peak flow meter or an inhaler before football practice. Meanwhile, A. J. is walking back and forth without making eye contact with his mother or the nurse. The CNS established eye contact with A. J. and directed the discussion to him. She asked about football, the position he plays, how practice was going, and how the team would do in the coming year. As the teen became more involved in the discussion, he moved closer. The CNS then asked how his symptoms were interfering with football. A. J. reported that he had to stop during practice to use his albuteral inhaler. When asked why he did not use the inhaler before practice, A. J. shrugged his shoulders and said, “I forgot.” Mindful that teens do not want to feel different from their peers, the CNS asked A. J. if using his inhaler in front of the rest of the football team was a problem. He said, “No.“The CNS then shared her experiences with African American teens who had experienced severe asthma symptoms and treatment in the pediatric intensive care unit. A. J. remained attentive. When asked what could help him control his asthma symptoms, A. J. did not have an immediate answer, but was willing to review inhaler technique. A. J. then admitted that he felt the inhaler was not working and he did not get much relief from the symptoms. On review of technique, it was discovered that A. J. was using the inhaler too fast, which did not allow the medication to reach much more than the back of his throat. Thus the medication was ineffective because it did not reach the smooth muscles of the bronchial tubes. Gentle correction was used, and on follow-up, A. J.‘s technique was improving. Negotiation between A. J. and the CNS led to work on improving his technique and using the inhaler before practice. A. J. also agreed to allergy testing, which revealed that he was allergic to dust mites, grasses, molds, and ragweed. Both A. J. and his mother were open to environmental controls. The ragweed, grass, and mold were of particular concern because of their degree of interference with playing football. The CNS and A. J’s mother supported A. J.‘s decision not to give up the sport that he enjoyed. A corticosteroid inhaler was included twice a day in A. J.‘s plan of care for the ragweed, grass, and mold seasons. A. J. would be re-evaluated in 1 month or sooner if symptoms became worse or interference in lifestyle continued. The CNS identified intrusiveness of treatment on playing football as the focal stimuli for A. J. This focal stimuli was complicated by ineffectiveness of the treatment because of A, J.‘s poor inhaler technique and the need for an additional inhaler (cotticosteroid) to control his allergic response to ragweed, grass and mold. The nurse negotiated the treatment plan around the teen’s lifestyle, with the steroid inhaler used at home before school and after football practice and the albuterol inhaler used before the start of practice and games. A. J. discussed and practiced medications and techniques and how to integrate them into his lifestyle without feeling different. A. J. and his mother were referred to the group, Mothers of Asthmatics.

and powerlessness and to identify nursing interventions for empowering adolescent patients with asthma. Current national guidelines for asthma care (U.S. Department of Health and Human Services [USDHHS], 1997) and the Roy adaptation model (Roy, 1976) are included as frameworks to assist health care professionals in empowering adolescents to adapt behavior that en-

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hances the prevention of acute attacks and encourages preventive management of the disease process, REVIEW

OF THE LITERATURE

Adolescence Adolescence is a series of changesphysical, sexual, cognitive, social, spiritual, and moral-that occur in 3 distinctive

stages. The stage of early adolescence, age 11 to 14 years, involves rapid physical growth and sexual maturation. Concerns about body image, one’s ability to control this “new” body, and being like everyone else dominate early adolescents’view of the world. They are self-absorbed as they attempt to deal with their physical changes. This stage is marked by a shift in the source of security and identification from one’s family to one’s peer group. Doubts about self arise when the adolescent does not feelnormal as defined by the peer group (Muscari, 1998; Orr, 1998; Wong, 1995). In the stage of middle adolescence, age 14 to 17 years, cognitive skills develop rapidly Abstract thinking evolves. Teens remain self-centenzd during much of this stage. Time orientation is changing from here-and-now to future. Experiences of self-doubt occur when poor decision making leads to conflicts between the middle adolescent’s expectations of himself or herself and what the teen believes significant others expect (Orr, 1998; Wong, 1995). Late adolescence, from age 17 to 20 years, is marked by changes related to setting vocational goals, furthering a sense of personal identity, and increasing intimacy (Erikson, 1968; Wong, 1995). If the tasks of adolescence have been achieved, teens will have a welldeveloped self-concept, function in social roles, and have less conflict with family and other adults concerned with their well-being. If the tasks have not been achieved, self-doubt, anger, poor decision-making, and social isolation occur (Orr, 1998; Wong, 1995). Chronic illnesses are perceived by adolescents as making one different and interfering with a sense of mastery and control (Muscari, 1998). These perceived differences are evident in physiologic or psychologic symptoms. For adolescents already dealing with developmental tasks, the addition of a chronic disease may overwhelm their limited personal, social, physical, and cognitive resources and initiate feelings of powerlessness (Muscari, 1998; Orr, 1998, Woodgate, 1998). Powerlessness Roy (1976) related powerlessness problem in the self-concept. In the adaptation model, powerlessness “perception of a lack of internal or sonal control over events” (Roy &

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drews, 1991, p. 312). The Roy adaptation model can be used to conceptualize asthmatic adolescents who experience powerlessness when dealing with agespecific changes and managing the chronicity of their illness. Changes occurring in and to the adolescent’s self-concept are stimuli. Behavior occurs, internally or externally, as the asthmatic adolescent adapts to the stimuli confronting the self-concept. Behaviors such as angry outbursts, withdrawal, or unwarranted dependence on others are symptoms of powerlessness and can interfere with adolescent development. Adolescents with asthma experience stimuli that can be focal, contextual, or residual (Roy, 1976). Focal stimuli confront the teen and are considered by teens as the most interfering stimuli in their lives. For adolescents with asthma, focal stimuli include (a) lack of control over symptoms, (b) unpredictability of acute attacks, (c) lack of control of treatment, and (d) intrusiveness of treatient on lifestyle or activities. The case study of A. J. (see Box 1) demonstrates the presence of several of these focal stimuli. Contextual stimuli are other stimuli present in the internal or external environment that affect the focal stimuli. Types of contextual stimuli experienced by teens with asthma are (a) chronicity of the disease, (b) health care location-accessibility, (c) health care providers’ attitudes, and (d) side effects of medications. The case study illustrates that health care providers need to direct communication to the teen. This action will support the adolescent’s developing ego, offer opportunities to practice decision-making skills, and increase the teen’s investment in adapting behavior to increase control. Residual stimuli are all the other elements existing with and around the adolescent. These stimuli include (a) all past illness-related experiences, (b) the cognitive level of the adolescent, (c) the culture of the adolescent, and (d) other influences in the adolescent’s environment. Nurses can use the Roy adaptation model to understand how stimuli affect the self-concept, develop tools to assess powerlessness, and intervene before powerlessness interferes with adolescent development or control of asthma symptoms. Descriptive studies involving children and adolescents with asthma can provide insight into the concept of pow-

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BOX 2 Nursing interventions related to powerlessness/asthmatic teens . l

l

. l

Nurse’s therapeutrc use of self Increasing knowledge or skills (nurse and patient) Communication-negotiate treatment plans around teen’s Inhaler, spacer, and peak flow techniques Integrative and alternative treatments Use of support groups Communicate with nonasthmatic peers to support asthmatic National groups Allergy and Asthma Foundation American Lung Association Mothers of Asthmatics/National Asthma Network National Jewish Center for Respiratory and Immunologic Local groups Asthma camps Support AsthmaticYouth (SAY program of ALA) On-line chat rooms supported by ALA Self-help groups Providing opportunities to learn how to make decisions Empowering the patient to use interventions

Data from Carpenrto, 1995; Conne[iy ALA, Amewan Lung Association.

et al., 1993, Roy, 7976, USDHHS,

erlessness by identifying themes from the subjects’ living experiences. In a study by Yoos and McMullen (1996), qualitative and quantitative methods were used to identify perceptions of the severity of asthma symptoms of 28 children with asthma. The subjects, a convenience sample, reflected a cross-cultural, suburban and urban mix. The chiIdren’s ages ranged from 6 to 18 years. These children with asthma were asked to tell the story of their experiences with the illness. Yoos and McMullen (1996) noted patterns related to themes and age. Children and early adolescents discussed feelings of “I can’t,” and “restrictions.” Later adolescents began to become reconciled to the disease. Yoos and McMullen (1996) used Visual Analog Scales on “worry” and “life is different.” School-aged subjects reported more “worry” than did adolescents, but adolescents revealed more concern with “life is different.” The subjects who reported low scores in “life is different” had less “I can’t” themes. This finding raises the question that if a person believes that “I can do,” does that person have less of a perception of feeling different and a decreased risk of powerlessness? Woodgate (1998) studied the perspectives of chronically ill adolescents regarding the health care providers car-

lifestyle

teens

Diseases

and how

to act on them

1997.

ing for them. This qualitative study consisted of interviews of 23 subjects, ages 13 to 16 years. Eight themes evolved from the data, including feelings of not wanting to be different and of wanting to be respected. These subjects also made it clear that they want health care providers who are competent. Given that these subjects were primarily middle adolescents, these themes are congruent with their evolving formal operational thinking and self-concept. These studies provide evidence that themes related to the life experience of adolescents with asthma, including (a) the symptoms and treatments, (b) feelings of being different, (c) feelings of not being able to grow up and make decisions, and (d) feelings of lack or loss of control, echo through the literature. Understanding the lived experience of adolescents with asthma assists nurses in identifying where their patients are in cognitive and emotional development and what nursing interventions are most appropriate.

NURSES EMPOWER ADOLESCENTS WITH ASTHMA Nursing interventions for perceived powerlessness include education, empowerment, and sell-help groups (Carpenito, 1995; Connelly, Keele, Kleinbeck, Schneider, & Cobb, 1993; Roy, 1976).

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BOX 3 Stepwise children

older

than

approach for managing 5 years: treatment*

asthma

in adults

and

BOX 4 Goals of asthma care Normal life, including regular school attendance and normal physical activity l Sleep disruption 90% of personal best >5 days per week l Increase in FEV, appropriate for age l

long-term

control

Step 4

Step 3

Step 2

Step 1

Daily medications: Anti-inflammatory: inhaled steroid AND Long-acting bronchodilator: either long-acting inhaled beta2-agonist, sustained-release theophylline, or long-acting betaZ-agonisttablets AND Steroid tablets or syrup long term; make repeated attempts to reduce systemic steroid and maintain control with high-dose inhaled steroid Daily medication: Either Anti-inflammatory: inhaled steroid OR Inhaled steroid and add a long-acting bronchodilator, especially for nighttime symptoms: either long-acting inhaled beta*-agonist, sustained-release theophylline, or long-acting betaZ-agonist tablets If needed: Anti-inflammatory: inhaled steroids AND Long-acting bronchodilator, especially for nighttime symptoms; either long-acting inhaled be&agonist, sustained-release theophylline, or long-acting betaI-agonist tablets Daily medication: Anti-inflammatory: either inhaled steroid or cromolyn or nedocromil Sustained-release theophylline to serum concentration of 5 to 15 pg/mL is an alternative, but not preferred, therapy; zafirlukast or zileuton may also be considered for those 212 years old, although their position in therapy is not fully established No daily medication needed

Quick relief All patients

Short-acting bronchodilator: inhaled be&-agonist as needed for symptoms; intensity of treatment will depend on severity of exacerbation

Modified from U. S. Department of Health and Human Serwces. (1997). Practical gwde for the dlagnosjs and management of asthma (p 1 I). Rockville, MD: Author 0 1997 by U. S. Department of Health and Human Services. *Preferred treatments are in bold print.

These interventions (see Box 2) can be modified for use with asthmatic teens. Empowering is an intervention that offers realistic choices based on realistic expectations of self and others (Connelly et al., 1993). The goal of empowering adolescents is to assist them in taking control of their asthma by increasing their knowledge and adapting new behaviors. Adolescents want knowledgeable health care providers who will treat them with respect (Woodgate, 1998). By knowing and using the National Heart, Lung and Blood Institute (NHLBI)

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guidelines (USDHHS, 1997), knowledgeable nurses can educate, consult, and provide direct care that will empower asthmatic adolescents. Empowering adolescents can be facilitated by teaching teens to prevent and manage symptoms while minimizing side effects from the medications. Teens also can be empowered to increase participation in physical activities and normal living. Thus feelings of “I can’t” and “life is different” will not inhibit the evolving self-concept. Adolescents with asthma may have a long history of experiencing respiratory

Modlfled from U. 5 Department of Health and Human Serwces. (I 997). Practical gwde for the dlagnosls and management of asthma (p. 11). Rockville, MD. Author. 0 1997 by U. S Department of Health and Human Serwces. FEVl, Forced expvatory volume In 1 second; PFF, peak expiratory flow.

symptoms, even if they have not been diagnosed with or treated for asthma. Nurses need to ask the teen or family if the teen has experienced asthma symptoms, including (a) coughing with activity or during the night, (b) shortness of breath, (c) trouble keeping up during physical activity, (d) wheezing or whistling with breathing, (fj recurrent pneumonia, and (g) chest pain (D. R. Ownby, personal communication, September 29,1998). Methods for assessing the disease process of asthma include invasive and noninvasive tests and procedures. The personal peak expiratory flow meter is a relatively inexpensive, portable, noninvasive assessment tool. The peak flow meter measures the greatest forced expiratory airflow and acts as a gauge of airway resistance (Wang, 1995). By correctly using the meter, the adolescent can identify changes in the airway and initiate use of rescue medications, such as albuterol, before shortness of breath or wheezing occurs. Using a peak flow meter can empower adolescents to monitor and control symptom exacerbation. Determination of the severity of asthma can be based on frequency or severiv of attacks, interval physical symptoms, effectiveness of medications, or interference in daily activities and sleeping. By identifying the severity of the asthma, maintenance medications such as inhaled anti-inflammatories, oral leukotrienes, or theophylline may be included earlier and more effectively in the teen’s treatment plan. The NHLBI guide-

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BOX S Asthma references Allergy and Asthma Network: Mothers of Asthmatics, Inc. 2751 Prosperity Avenue, Suite Faitfax,VA22031

150

(800) 878-4403 http:lfwww.aanma.org American Lung Association 1740 Broadway New York, NY 10010

(800) 5886-4872 http:llwww.lungusa.org Asthma and Allergy Foundation of America I 125 15th Street, NW, Suite 502 Washington, DC 20005

(800) 727-8462 http:l/www.aafa.org National Asthma Education Prevention Program NHLBI Information Center PO Box 30105 Bethesda, MA 20824-0105

and

(301) 496-0554 http://www.nhlbi.nih.gov/nhlbi/ nhlbi.htm National Jewish Center for Immunology and Respiratory Medicine 1400 Jackson Street Denver, CO 80206 (800) 222-Lung (24-hour line) http:l/www.njc.org Modified from U. S. Depattment of Health and Human Services. (19971. Practical guide for the diagnosis and management of asthma (p. 1 IL RockwIle, MD Author 63 1997 by U. S. Department of Health and Human Services

care needed to control the most severe symptoms. Treatment should be provided at the highest step, as determined by the presenting symptoms. Treatment can then be stepped down as the teen’s condition changes. By having all health care providers following the same classificaCons and management approach, adolescen& can consistently receive the same information about how to manage symptoms and monitor lung function and when to seek help. This consistency empowers asthmatic teens by increasing their opportunities to reinforce knowledge of the disease and skills to increase control of the symptoms of asthma. At each visit, the adolescent should be asked about the severity of the symptoms and interference in achieving goals of asthma care (see l3ox 4). Individual concerns need to be addressed and incorporated into the goals. Other interventions include: (a) praise for keeping a peak flow diary and bringing it to the visit; (b) review of inhaler, spacer, and peak flow techniques with gentle corrections as needed; (c) professional referrals as needed; and (d) referrals to local and national resources (see Box 5) (USDHHS, 1997). Adolescents need to be informed when their concerns are part of normal adolescent development and when the concerns are related to the illness. Knowing that concerns related to rapid growth, body image, feelings of belonging, and thinking more abstractly are normal tasks of evolving to adulthood helps adolescents feel more like their peers (Muscari, 1998).

INDICATIONS

lines offer a severity classification system that correlates with the stepwise approach for managing asthma (USDHHS, 1997). The stepwise approach to management of asthma (see Box 3) lists step 4 first Step 4 is for patients who have the most severe and persistent symptoms. By listing the steps with medical interventions for the most severe and persistent symptoms first, health care providers will become more aware of the need to provide the appropriate level of

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FOR THE FUTURE

Research related to measuring the outcomes of the stepwise approach and of using Roy‘s adaptation model is needed. Decreasing use of emergency room, inpatient care, and urgent care office visits is expected from implementation of the national guidelines. Measurable outcomes can include morbidity and mortality rates, school and work absenteeism, cost of treating the illness, and patient satisfaction. Nursing research is needed to determine the effect of health care partnerships and empowerment interventions on increasing the adolescenVs self-con-

cept and adaptation of behaviors to control asthma symptoms and disease management. Further knowledge of the lived experience of adolescents with chronic illnesses will enable nurses to (a) identify age-specific needs, (b) develop and modify assessment tools for teens, and (c) develop and test interventions and treatments for health protection and promotion in this population. By using Roy’s adaptation model (Roy, 1976) and developmental theeries, nurses can create a theory-based practice for adolescents with asthma. While incorporating the NKLBI guidelines (USDHHS, 1997), the nurse should assess for powerlessness and asthma symptoms. This integrated approach by nurses can empower adolescents to adapt to an “I can” and “life is not different” attitude for healthy behavior.

REFERENCES Carpemto, L. J. (1995) ~~~rs~~gd~g~osls:App~[cat~on to chnical practice. Philadelphia J. B, Lippincott company. Centers for Disease Control and Prevention. (1998). Forecasted state-spectiic estimates of self&e ported asthma prevalent+-United States, 1998. Morbtdtty and MortalQ Weekly Report, 47, 102% 107.5. Ccmnelly, L. M,, Keele, B. S., Kleinbeck, S V. M., Sclmeider, J. K , &Cobb, A. K (1993). A place to be yourselk Empowement from the client’s perspective. 1mage:Jourm~ ofNursing Scholarshzp, 25,297.303. Erikson, E. (1968). 1deutzty. Youth in crisis. New York Norton, Gale, C. A. (1989). Inadequacy of health care for the nation’s chronically ill children. Jourmd of Pedutric Health Care, 3,20-27. Guyton, A. C., & Hall, J. E. (1996). Textbook ofmedmd physio&y (9th ed ) Philadelphia. W. B Saunders Company. Muscan, M. E. (1998). Coping with chronic Illness. American Journai ofNwmg, 98,20-2.2. Om, D I?. (1998). Helping adolescents toward adulthood. Contempora y Pediatrtcs, 15,55-76 Roy, C. (1976). lntroductzox to nursing:Anadaptatzon model. Englewood, NJ: Prentice-Hall, Inc. Roy, C., & Andrews, H. (1991). The Roy adaptatzon model: The defimtwe statement Norwalk, CT. Appleton &Lange U. S. Department of Health and Human Semces. (1997) Practxza~guide jar the diagmxis and managemext of asthma (NIH publxatlon No. 97. 4053). Rockville, MD Author Wang, D. L. (1995). Wh&y and Wo?zg’s mmng care ofinfants and chddrefi (5th ed.). St Louis: Mosby. Woodgate, B. (1998). Health professionals caring for chromcalIy fl adolescents The adolescents’ perspectives. Journal of the Soczety of Pedfatrzc Nursing, 3,57-68. Yoos, H. L., &McMullen, A (1996). Illness narratives of children with asthma. Pedzatnc Nursing, 22,285-289.

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