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Self-management of pediatric asthma: Four programs being studied
Cynthia Hobbie, MPH, RN, CPNA St. Paul’s Children’s Hospital St. Paul, Minnesota
Self-Management of Pediatric Asthma: . Four Programs Being Studied 9 Sharon
I. Rolnick,
S
everal programs to promote self-management skills for children with asthma have been developed (American Lung Association; Evans et al., 1987; Fireman et al., 1981; Hindi-Alexander & Gropp, 1984; Lewis et al., 1984; National Heart, Lung and Blood Institute [NHLBI], “AIR POWER,” 1984; NHLBI, “AIR WISE,” 1984; NHLBI, “Living with Asthma,” 1985; NHLBI, “Open Airways,” 1984; Parcel et al., 1980). Each attempts to promote family control over the child’s asthma. Although the approaches vary in their particular characteristics (e.g., number of sessions, group vs individualized instruction, and depth of information presented), the programs teach children and parents about precipitating factors, medications, and appropriate behaviors during acute asthma episodes. The goal is for families to work in partnership with their physicians toward improved asthma management. Some specific asthma educational programs have been studied and have shown positive outcomes for participants. Benefits have included increased knowledge about the disease, reduction in the number of emergency room visits, decreased school absences, reduction in acute asthma attacks, better compliance and management behaviors, and a decrease in estimated health care costs. (For references that reported these benefits see Table 1.) A study is currently under way to compare directly the effectiveness of four different pediatric asthma self-management programs on patients from Group Health Inc. and Aspen Medical Group in the twin
Sharon J. Rolnick is Associate Research Scientist for Research, Minneapolis, Minnesota.
264
at the American
Institutes
PhD,
MPH
cities of Minneapolis and St. Paul, Minnesota.* The study is funded by a grant awarded to the American Institutes for Research by the National Heart, Lung and Blood Institute. The purpose of this 2-year clinical trial is to evaluate the effectiveness of four different currently available asthma self-management programs. The investigators are examining the overall effect of education vs usual care as well as differences between programs on ease of implementation, program costs, and the effects on asthma morbidity and health system utilization. The research is being conducted with more than 300 families of children, ages 7 to 12 years, who have asthma. Families were randomly assigned to one of six groups-two control conditions or one of the four educational interventions. The educational programs include the following: “Living with Asthma,“t “AIR WISE,“t AIR POWER,“t and “Superstuff.“+ Living with Asthma was developed at the National Asthma Center in Denver, Colorado. This eightsession program has separate, simultaneous, 90minute sessions for parents and children. The sessions present information on medications, early warning signals, triggers, and emergency plans. Asthma self-
‘Dr. Rolnick is Clinical Coordinator for the study. The principal investigator is Sandra Wilson-Pessano, PhD, American Institutes for Research (AIR). Coinvestigators are Lloyd fish, MD, Section Head of Allergy, Group Health Inc.; Arthur Page, MD, Allergist, Aspen Medical Group; Gary Arsham, MD, PhD, AIR. tThese programs are available by writing to Superintendent of Documents: U.S. Government Printing Office, Washington, DC 20402 (stock numbers are listed in the references). *Superstuff is available from The American Lung Association: Publications Department, 1740 Broadway, New York, NY 10019. Kits may also be available from local chapters of the American Lung Association.
JOURNAL
OF PEDIATRIC
HEALTH
CARE
Journal of Pediatric Health
n
TABLE
NHLBI,
Patient Education
Care
1 Reoorted
National
Heart,
benefits of asthma educational
Lung and Blood Institute.
For complete
Review
265
programs
bibliographic
management skills are taught through demonstration with many opportunities for discussion and problem solving on asthma management as well as general parenting skills. (Price $40.) AIR WISE was developed at the American Institutes for Research. It teaches asthma selfmanagement skills tailored to the needs of the individual child in one-on-one sessions. This program is designed for children having significant difficulty in asthma management. On the basis of the child’s responses to an educational/ behavioral diagnostic interview, nurse educators choose from among 25 objectives to fashion an individualized program delivered through teaching scripts matched to each objective. The program involves the parent and child’s physician for reinforcement and assistance in reaching goals set in each weekly session. (Price $16.) AIR POWER was also developed at the American Institutes for Research. This is a group program for children and their parents. This four-session course
data, see reference
list.
teaches skills in prevention of acute asthma episodes, intervention and control of attacks, proper medication taking, and coping behaviors. It includes information about asthma, worksheets, discussion, and relaxation exercises. Parents and children meet separately and cover the same material but from different perspectives. (Price $10.) SuperstuJff, developed by the American Lung Associaton, is a package of educational materials designed for families of young children. For each child there is a colorful 86-page book containing riddles, puzzles, games, and other imaginative devices to teach the child important concepts about asthma selfmanagement. For the parent there is a 16-page newsletter with questions and answers, parent-oriented stories about problems associated with having a child with asthma, and guidelines for using the kit. (Price $10.) For each child involved in the four-program comparison study, medical records are being used to ob-
266
Patient Education
Volume 2, Number 5 September-October 19i38
Review
tain data on medication usage, health care utilization, and number of emergency room visits or hospitalizations before and after education. In additon, quarterly physical examinations are given and parent surveys assessknowledge, attitudes, and behaviors with respect to asthma management. The educational sessions have been conducted and analyses are in progress. Parents in each of the programs have overwhelmingly praised the education provided. Some comments have included the following: ‘The involvement of parent, child and doctors makes a difference because we are working as a team. We don’t feel alone.” (Yhptmtuf’parent) “It was helpful to see other kids have the same difficulties and that there are ways to handle them successfully . . ..” (‘MR POWER”parent) “She understands now why she is unable to breathe comfortably at times. She now knows what her medication does for her and is more willing to remember on her own to take it at the proper times. I love it.” (‘CAIR WISE” parent) “Shifting responsibility to the child has increased his feeling of being in control, lessened his feeling of helplessness. . . .” (CcLiviingwith Asthma” parent) For additional selected readings on the self-management of pediatric asthma, see Appendix following the references. REFERENCES American Lung Association. Suptxrtufl Item No. 0317. Evans, D., Clark, N. M., Feldman, C. H., Rips, J., Kaplan, D., Levison, M. J., Wasilewski, Y., Levin, B., & Mellins, R. B. (1987). A school health education program for children with asthma aged 8- 11 years. Health Education Quarterly, 14, 267279. Fireman, P., Friday, G. A., Gira, C., Vierthaler, W. A., & Michaels, L. (1981). Teaching self-management skills to asthmatic children and their parents in an ambulatory setting. Pediatrics, 68, 341-348. Hindi-Alexander, M. C., & Gropp, G. J. A. (1984). Evaluation of a family asthma program. Journal of Allergy and Clinical Immuno&+ 74, 505-510.
Lewis, C. E., Rachelefsky, G. S., Lewis, M. A., dela Sota, A., & Kaplan, M. (1984). A randomized trial of A.C.T. (asthma care training) for kids. Pediuhcs, 74, 478-486. National Heart, Lung and Blood Institute. (1984).AIR POWER: Selfman~ement of adma tbroughgvoup education. (No. 017. 044-00050-8). Bethesda, MD: U.S. Government Printing Office. National Heart, Lung and Blood Institute. (1984). AIR w7sE: Se@nmqpmtnt of asthma thou& individual educutim. (No. 017-044-00048-6). Bethesda, MD: U.S. Government Printing Office. National Heart, Lung and Blood Institute. (1985). Lioing with asthma: Part 1. Manualfor of childhood a&mu. Part2. munqement of a&mu.
tea&&g parenn the self-munapmznt Manualfm teathing children the self-
(No. 017-044-00053-2). Bethesda, MD: U.S. Government Printing Office. National Heart, Lung and Blood Institute. (1984). @en airwayslRespiro abierto: Asthma self-wmgement pqpm. Bethesda, MD: U.S. Government Printing Office. Parcel, G. S., Nader, P. R., & Tierman, K. (1980). A health education program for children with asthma. Journal of Developmental and Behavioral Pediatrics, 1, 128-132. Appendix Creer, T. L. (1987). Living with asthma: Replication and extensions. Health Education Quarterly, 14, 319-329. Feldman, C. H. (1987). Asthma education: General aspects childhood programs. Journal ofAllergy and Clinical Immunology, 80, 494-497. Krutzsch, B. A., Bellicha, T. C., & Parker, S. R. (1987). Making childhood asthma management education happen in the community: Translating health behavioral research into local programs. Health Education Quarter& 14, 357-373. Lewis, E. C., & Lewis, M. A. (1987). Evaluation of implementation of self-management programs for children with-asthma. Tour& ofAlleray and Clinical Immurwlo~. 80. 498-500. RachelefsG, CT S. (1987). Revie;’ of’ asthma selfmanagement programs. Journal of Allege and Clinical Immunolog? 80, 506511. Wilson-Pessano, S. R., & McNabb, W. L. (1985). The role of patient education in the management of childhood asthma. &Preventive
Medicine,
14, 670-687.
Self-Management of Pediatric Asthma: . Four Programs Being Studied 9 Sharon
I. Rolnick,
S
everal programs to promote self-management skills for children with asthma have been developed (American Lung Association; Evans et al., 1987; Fireman et al., 1981; Hindi-Alexander & Gropp, 1984; Lewis et al., 1984; National Heart, Lung and Blood Institute [NHLBI], “AIR POWER,” 1984; NHLBI, “AIR WISE,” 1984; NHLBI, “Living with Asthma,” 1985; NHLBI, “Open Airways,” 1984; Parcel et al., 1980). Each attempts to promote family control over the child’s asthma. Although the approaches vary in their particular characteristics (e.g., number of sessions, group vs individualized instruction, and depth of information presented), the programs teach children and parents about precipitating factors, medications, and appropriate behaviors during acute asthma episodes. The goal is for families to work in partnership with their physicians toward improved asthma management. Some specific asthma educational programs have been studied and have shown positive outcomes for participants. Benefits have included increased knowledge about the disease, reduction in the number of emergency room visits, decreased school absences, reduction in acute asthma attacks, better compliance and management behaviors, and a decrease in estimated health care costs. (For references that reported these benefits see Table 1.) A study is currently under way to compare directly the effectiveness of four different pediatric asthma self-management programs on patients from Group Health Inc. and Aspen Medical Group in the twin
Sharon J. Rolnick is Associate Research Scientist for Research, Minneapolis, Minnesota.
264
at the American
Institutes
PhD,
MPH
cities of Minneapolis and St. Paul, Minnesota.* The study is funded by a grant awarded to the American Institutes for Research by the National Heart, Lung and Blood Institute. The purpose of this 2-year clinical trial is to evaluate the effectiveness of four different currently available asthma self-management programs. The investigators are examining the overall effect of education vs usual care as well as differences between programs on ease of implementation, program costs, and the effects on asthma morbidity and health system utilization. The research is being conducted with more than 300 families of children, ages 7 to 12 years, who have asthma. Families were randomly assigned to one of six groups-two control conditions or one of the four educational interventions. The educational programs include the following: “Living with Asthma,“t “AIR WISE,“t AIR POWER,“t and “Superstuff.“+ Living with Asthma was developed at the National Asthma Center in Denver, Colorado. This eightsession program has separate, simultaneous, 90minute sessions for parents and children. The sessions present information on medications, early warning signals, triggers, and emergency plans. Asthma self-
‘Dr. Rolnick is Clinical Coordinator for the study. The principal investigator is Sandra Wilson-Pessano, PhD, American Institutes for Research (AIR). Coinvestigators are Lloyd fish, MD, Section Head of Allergy, Group Health Inc.; Arthur Page, MD, Allergist, Aspen Medical Group; Gary Arsham, MD, PhD, AIR. tThese programs are available by writing to Superintendent of Documents: U.S. Government Printing Office, Washington, DC 20402 (stock numbers are listed in the references). *Superstuff is available from The American Lung Association: Publications Department, 1740 Broadway, New York, NY 10019. Kits may also be available from local chapters of the American Lung Association.
JOURNAL
OF PEDIATRIC
HEALTH
CARE
Journal of Pediatric Health
n
TABLE
NHLBI,
Patient Education
Care
1 Reoorted
National
Heart,
benefits of asthma educational
Lung and Blood Institute.
For complete
Review
265
programs
bibliographic
management skills are taught through demonstration with many opportunities for discussion and problem solving on asthma management as well as general parenting skills. (Price $40.) AIR WISE was developed at the American Institutes for Research. It teaches asthma selfmanagement skills tailored to the needs of the individual child in one-on-one sessions. This program is designed for children having significant difficulty in asthma management. On the basis of the child’s responses to an educational/ behavioral diagnostic interview, nurse educators choose from among 25 objectives to fashion an individualized program delivered through teaching scripts matched to each objective. The program involves the parent and child’s physician for reinforcement and assistance in reaching goals set in each weekly session. (Price $16.) AIR POWER was also developed at the American Institutes for Research. This is a group program for children and their parents. This four-session course
data, see reference
list.
teaches skills in prevention of acute asthma episodes, intervention and control of attacks, proper medication taking, and coping behaviors. It includes information about asthma, worksheets, discussion, and relaxation exercises. Parents and children meet separately and cover the same material but from different perspectives. (Price $10.) SuperstuJff, developed by the American Lung Associaton, is a package of educational materials designed for families of young children. For each child there is a colorful 86-page book containing riddles, puzzles, games, and other imaginative devices to teach the child important concepts about asthma selfmanagement. For the parent there is a 16-page newsletter with questions and answers, parent-oriented stories about problems associated with having a child with asthma, and guidelines for using the kit. (Price $10.) For each child involved in the four-program comparison study, medical records are being used to ob-
266
Patient Education
Volume 2, Number 5 September-October 19i38
Review
tain data on medication usage, health care utilization, and number of emergency room visits or hospitalizations before and after education. In additon, quarterly physical examinations are given and parent surveys assessknowledge, attitudes, and behaviors with respect to asthma management. The educational sessions have been conducted and analyses are in progress. Parents in each of the programs have overwhelmingly praised the education provided. Some comments have included the following: ‘The involvement of parent, child and doctors makes a difference because we are working as a team. We don’t feel alone.” (Yhptmtuf’parent) “It was helpful to see other kids have the same difficulties and that there are ways to handle them successfully . . ..” (‘MR POWER”parent) “She understands now why she is unable to breathe comfortably at times. She now knows what her medication does for her and is more willing to remember on her own to take it at the proper times. I love it.” (‘CAIR WISE” parent) “Shifting responsibility to the child has increased his feeling of being in control, lessened his feeling of helplessness. . . .” (CcLiviingwith Asthma” parent) For additional selected readings on the self-management of pediatric asthma, see Appendix following the references. REFERENCES American Lung Association. Suptxrtufl Item No. 0317. Evans, D., Clark, N. M., Feldman, C. H., Rips, J., Kaplan, D., Levison, M. J., Wasilewski, Y., Levin, B., & Mellins, R. B. (1987). A school health education program for children with asthma aged 8- 11 years. Health Education Quarterly, 14, 267279. Fireman, P., Friday, G. A., Gira, C., Vierthaler, W. A., & Michaels, L. (1981). Teaching self-management skills to asthmatic children and their parents in an ambulatory setting. Pediatrics, 68, 341-348. Hindi-Alexander, M. C., & Gropp, G. J. A. (1984). Evaluation of a family asthma program. Journal of Allergy and Clinical Immuno&+ 74, 505-510.
Lewis, C. E., Rachelefsky, G. S., Lewis, M. A., dela Sota, A., & Kaplan, M. (1984). A randomized trial of A.C.T. (asthma care training) for kids. Pediuhcs, 74, 478-486. National Heart, Lung and Blood Institute. (1984).AIR POWER: Selfman~ement of adma tbroughgvoup education. (No. 017. 044-00050-8). Bethesda, MD: U.S. Government Printing Office. National Heart, Lung and Blood Institute. (1984). AIR w7sE: Se@nmqpmtnt of asthma thou& individual educutim. (No. 017-044-00048-6). Bethesda, MD: U.S. Government Printing Office. National Heart, Lung and Blood Institute. (1985). Lioing with asthma: Part 1. Manualfor of childhood a&mu. Part2. munqement of a&mu.
tea&&g parenn the self-munapmznt Manualfm teathing children the self-
(No. 017-044-00053-2). Bethesda, MD: U.S. Government Printing Office. National Heart, Lung and Blood Institute. (1984). @en airwayslRespiro abierto: Asthma self-wmgement pqpm. Bethesda, MD: U.S. Government Printing Office. Parcel, G. S., Nader, P. R., & Tierman, K. (1980). A health education program for children with asthma. Journal of Developmental and Behavioral Pediatrics, 1, 128-132. Appendix Creer, T. L. (1987). Living with asthma: Replication and extensions. Health Education Quarterly, 14, 319-329. Feldman, C. H. (1987). Asthma education: General aspects childhood programs. Journal ofAllergy and Clinical Immunology, 80, 494-497. Krutzsch, B. A., Bellicha, T. C., & Parker, S. R. (1987). Making childhood asthma management education happen in the community: Translating health behavioral research into local programs. Health Education Quarter& 14, 357-373. Lewis, E. C., & Lewis, M. A. (1987). Evaluation of implementation of self-management programs for children with-asthma. Tour& ofAlleray and Clinical Immurwlo~. 80. 498-500. RachelefsG, CT S. (1987). Revie;’ of’ asthma selfmanagement programs. Journal of Allege and Clinical Immunolog? 80, 506511. Wilson-Pessano, S. R., & McNabb, W. L. (1985). The role of patient education in the management of childhood asthma. &Preventive
Medicine,
14, 670-687.