|ORIGINAL RESEARCH ARTICLE
|Year : 2014 | Volume
| Issue : 1 | Page : 34-38
Pilot undergraduate course teaches students about chronic illness in children: An educational intervention study
Roberto E. Montenegro1, Krista D. Birnie2, Paul Graham Fisher2, Gary V. Dahl2, John Binkley2, Joshua D. Schiffman3
1 Department of Psychiatry, Yale University, New Haven, Connecticut, USA
2 Department of Pediatrics, Stanford University, Palo Alto, California, USA
3 Department of Pediatrics, University of Utah, Salt Lake City, Utah, USA
|Date of Web Publication||11-Jun-2014|
Dr. Joshua D. Schiffman
Huntsman Cancer Institute, University of Utah 2000 Circle of Hope, Room 4343, Salt Lake City, UT 84112
Source of Support: None, Conflict of Interest: None
Background: Recent data question whether medical education adequately prepares physicians to care for the growing number of children with chronic medical conditions. We describe a 10-week course designed to provide undergraduate students with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. The course presented the illness experience from the child's perspective and thus presented information in a manner that was efficient, conducive, and memorable. The curriculum was designed like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. Methods: This is an educational intervention study that used survey data to assess changes in attitudes among and between participants completing this course versus students not exposed to this course. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons. Results: Course participants were more likely to change their attitudes and agree that chronically ill children "feel comfortable talking with their peers about their condition" (P=0.003) and less likely to agree that these children "want to be treated differently," "want more sympathy," or "care less about romantic relationships" (P = 0.003, 0.002 and 0.02, respectively). Controls were more likely to continue to agree that chronically ill children "want to be treated differently" (P = 0.009) and "care less about romantic relationships" (P = 0.02), and less likely to agree that these children "talk openly" or "feel comfortable talking with their peers about their condition" (P = 0.04). Conclusions: This classroom-based course serves as a feasible and cost-effective model for universities and medical schools to aid in improving student attitudes toward treating chronically ill children. The course provides the unique opportunity to learn directly from those who care for and those who have lived with chronic illness.
Keywords: Attitudes, childhood chronic illness, chronic illness curriculum, chronic illness attitudes, curriculum development, medical education
|How to cite this article:|
Montenegro RE, Birnie KD, Fisher PG, Dahl GV, Binkley J, Schiffman JD. Pilot undergraduate course teaches students about chronic illness in children: An educational intervention study. Educ Health 2014;27:34-8
|How to cite this URL:|
Montenegro RE, Birnie KD, Fisher PG, Dahl GV, Binkley J, Schiffman JD. Pilot undergraduate course teaches students about chronic illness in children: An educational intervention study. Educ Health [serial online] 2014 [cited 2022 Jan 25];27:34-8. Available from: https://www.educationforhealth.net/text.asp?2014/27/1/34/134305
| Background|| |
Chronic illness affects an estimated 1 in 10 children living in the United States. ,, Children and adolescents with chronic disease have unique psychosocial and developmental needs. ,,,,, Moreover, pediatric chronic illness affects the entire family with lasting impact on parents, sibling, and even marital cohesion. , Successful coping with chronic illness by children and adolescents regulates emotions, creates interpersonal meaning, and encourages participation in shared medical decision-making.  Although physicians have the potential to serve as tremendous resources in helping with the needs of developing children and adolescents with chronic conditions, without input from families, pediatricians can miss numerous needs that can be identified by parents. 
Recent data question whether medical education adequately prepares physicians to care for these children or the 125 million North Americans who currently have chronic conditions. ,, Data from the World Health Organization (WHO) report similar if not higher rates of chronic disease worldwide.  Many North American physicians throughout various specialties report an inadequate amount of training in dealing with chronic illness. These same physicians, however, also report that the limited instruction that they receive did enhance their ability to improve the lives of patients with chronic illness.  International physicians likely also have a limited exposure, as the WHO has not put forth a curriculum in this area. In addition to the dearth of preparation, the medical management of children with chronic illnesses is also complicated by pre-conceived dim attitudes that many entering medical students have about working with chronically ill children. A large number of entering first year medical students report anticipated sadness and frustration with working with this population.  Of those who do not enter medical school with discouraging views, many of them, unfortunately, will have a drastic decrease in their enthusiasm as their clinical experience increases. 
With the exception of a previously reported course focusing on cancer survivorship,  no other medical curricula addressing the developmental needs of chronically ill children or adolescents has been reported. Likewise, there are no examples of courses that provide guidelines in helping develop curricula that can effectively change negative attitudes associated with working with chronically ill children. Many medical schools have attempted to shift their medical pedagogy from the biomedical model to the biopsychosocial model of health and wellbeing. In doing so, some schools have developed chronic illness courses that utilize clinical encounters with single patients or "Big Brother/Big Sister" models, that for the most part, are void of a more holistic or in-depth exploration of the numerous issues that can impede a patient's wellbeing. ,, Given the ever-increasing number of children with chronic illnesses, together with the increasing financial restrictions that many colleges and medical schools are facing, it is critical to develop a curriculum that educates future healthcare providers about pediatric chronic illnesses in a manner that is logistically feasible, cost effective, and more importantly, successful in fostering attitudes conducive toward working with chronically ill children and adolescents.
Based upon these deficiencies in medical education, we developed, implemented and evaluated a seminar-based NOT lecture-based curriculum designed to provide undergraduate students planning a career in health and/or mental health professions with the knowledge and skills required to understand and care for children with chronic or catastrophic illnesses. More specifically, this course provided examples of how medical schools can design curricula where students learn from chronically ill children themselves, and those who care for them, that will in turn encourage a more comprehensive and compassionate practice of medicine.
This course was piloted using self-selected pre-medical/pre-health undergraduate students enrolled at a selective U.S. university attended by many pre-professional health students. However, we believe that the same format and teaching methods can also be applied to graduate-level health professions students. We focused the presentation of the entire illness experience from the child's perspective and designed the course like a graduate-level seminar that included workshops, lectures, readings, writing, and lively discussions. With the guidance from course instructors and health professionals, many of the lecture topics were presented by the patients and family members themselves. The curriculum emphasized having the students learn from the patients and thus presented information in a manner that was efficient, conducive, and memorable.
A multidisciplinary panel of experts representing the fields of pediatric oncology, neurology, and general pediatrics developed a set of objectives that they believed would facilitate learning about care for chronically ill children. Knowledge objectives included understanding the social, psychosocial, and medical contexts experienced by children and adolescents with chronic or catastrophic illness, and understanding how these psychological and biological components of chronic illness influence child and adolescent development. Skill objectives included the ability to appreciate the importance of an interdisciplinary approach in viewing and managing chronic childhood illnesses, providing normalcy for the child and family, and teaching communication skills to facilitate the delivery of bad news.
Development and implementation of curriculum
"Pediatrics 115: The Experience of Chronic Illness from the Developing Child's Perspective" consisted of ten seminar sessions, each approximately 75 min long. Students received two units of college credit representing an average of 5-6 h of classwork every week. Undergraduate students met in a small classroom within the medical school in order to facilitate discussion and close interaction with the guest speakers. All sessions were moderated by a senior medical school faculty member from the Department of Pediatrics. Lecturers included long-term adult survivors of cancer, parents of children and adolescents with a chronic illness, pediatric oncologists, pediatric liver transplant specialists, and nurse practitioners who specialize in working with children with chronic illnesses. Each lecture topic [Table 1] was supplemented with readings that included Sontag's "Illness As Metaphor,"  Sourkes' "Armfuls of Time: The Psychological Experience of the Child With a Life-Threatening Illness,"  and "The Deepening Shade: Psychological Aspects of Life-Threatening Illness."  Opportunity for class discussion each week ensured that students would be able to share their experiences, as well as receive crucial feedback from health and mental health professionals. In addition, Internet blogs were set up and maintained by a teaching assistant for students to continue discussion after class.
We developed a 14-item instrument to assess changes in the student's knowledge of and attitudes toward pediatric chronic illnesses. This self-administered survey was provided both before and after the students participated in the course. Responses were provided on a four-point Likert scale: 1 = "Completely Agree" to 4 = "Completely Disagree". Descriptive results are presented using dichotomized variables for space conservation [Table 2]. One control undergraduate student (students who were not exposed to the course) was selected for every two students who participated in the course with frequency matched on gender and age. Controls completed the same initial survey assessment followed by a second assessment 10 weeks afterwards.
|Table 2: Pre and post-course responses to pediatric chronic illness questions for course participants and controls; (N=29)|
Click here to view
We analyzed the data using STATA 11.0 (College Station, TX) statistical software. We used Somers' D test and Fisher's z-transformation to perform both pre- and post-nonparametric comparisons of: (1) Course participants to control student responses; (2) Course participant's pre-course responses to matched post-course responses; and (3) control pre-course responses to their matched post-course responses. The educational research was approved by the University Institutional Review Board.
| Results|| |
A total of 19 students completed the course and a total of 10 students who were not exposed to the course served as the controls. All enrollees were third or fourth year college students majoring in Human Biology, a pre-medical major. Before exposure to the course, there were no statistically significant differences in knowledge and attitudes between both groups of students [Table 2]. However, following the 10-week course, class participants exhibited significant changes in their understanding of and attitudes toward chronically ill children compared with controls. For instance, a Von Mises Somers' D test with Fisher's z-transformation suggests that given the changes observed in the course participants compared with the control group, students not exposed to the course are likely to be 44% less in agreement with the idea that "chronically ill children talk openly about their illness" (P = 0.04, 95% confidence interval 3-72%) and 47% less in agreement that "children with chronic illness feel comfortable talking with their peers about their condition" (P = 0.04, 95% confidence interval 4-75%). Moreover, students not exposed to the course were 56% more likely to be in agreement with the idea that "children with chronic illness care about romantic relations less than their peers" (P = 0.02; 95% confidence interval 13-82%).
To further validate whether students' views changed significantly by being exposed to this course, course participants and controls were used as their own individual comparisons [Table 2]. Following the course, participants exhibited significant changes in their understanding of the role that chronic illness has in the patient's psycho-social and developmental wellbeing as well as their perception about a child's comfort in talking about their chronic illness. For example, compared with controls, randomly sampled post-course participants were 53% more likely to disagree with the statement, "children with chronic illness want to be treated differently from their friends who are well," were 47% more likely to disagree with the statement, "children with chronic illness want people to sympathize with what they're going through," and were 28% more likely to disagree with the statement, "children with chronic illness care about romantic relations less than their peers" (P = 0.003; 95% confidence interval 20-67%), (P = 0.002; 95% confidence interval 24-73%), and (P = 0.02; 95% confidence interval 5-47%), respectively. Likewise, course participants were 50% more likely to agree with the statement, "children with chronic illness feel comfortable talking with their peers about their condition" after being compared to before the course (P = 0.003, 95% confidence interval 21-70%). There were no statistically significant changes in the control group's beliefs between their initial assessment and following a 10-week lapse period.
| Discussion|| |
A seminar-style course encouraging undergraduate student interaction with patients, families, and providers who care for children with chronic illness has the potential to change attitudes early in the student's training. Unlike most curricula, this course focused on having students learn from the perspective of the child, which may have contributed to the changes observed in course participants. Among students, we observed a change in attitudes toward the theme of "normalcy". By the end of the course, students were more likely to believe that children with chronic illness did not want to be treated differently than their friends who are well. Students came to appreciate that children with chronic illness have many, if not all, of the same "routine desires" as their friends who are well (e.g. the desire for romantic relations) and are able to communicate openly about their chronic illness experiences. Students may have experienced this changed perspective by focusing on the storyteller's personal accounts explaining their desire to not to be seen as "sick kids," but rather, to be seen for the entirety of who they are. Students learned that many children with chronic illness accept their condition, desire to learn more about it, become experts on their disease, and may even have the desire to share their experiences with others. The polar change among course students from "disagree to agree" to the statement "Children with chronic illness feel comfortable talking with their peers about their condition" and strong yet not statistically significant change in their beliefs regarding "Children with chronic illness talk openly about their illness" suggests that students may have been unaware of the degree to which children with chronic illness may truly like to know exactly about what is happening to their bodies or the degree to which they are comfortable talking about their illness. Students exposed to the course came to realize that the more a chronically ill child learned about his/her illness, the more that child will feel empowered, a sense of control and in turn obtain a sense of independence.
We must be cautious in interpreting our results. The students who elected to take this course had expressed a clear interest in childhood health, whereas the controls selected from each students' residential dormitory did not necessarily share the same educational interests and paths. However, controls were identified by students enrolled in the course, and therefore perhaps shared similar values. Moreover, all controls completed both the pre- and post-course survey (as did all cases), and we believe that this lack of attrition demonstrates some real interest in the topic. For survey questions that did not show a difference between cases and controls, we must likewise be cautious as the lack of difference could have stemmed from small sample sizes in some cases.
We believe exposing students early in their health professions pathway to the unique challenges encountered by children with chronic illnesses may be a way to change negative, pre-conceived notions that many health professions students have about working with chronically ill children. Given the current need to educate future physicians and other healthcare providers about the unique challenges encountered by children with chronic illnesses, together with the economic restraints confronted by many medical schools in the U.S. and around the world, a seminar-style course with chronically ill guest speakers and subsequent lively discussions can be a successful way for students to better understand the perspective of children living with chronic illness. A course such as this could be useful in preparing students who are entering the healthcare profession to be more in-tune with the desires of sick children and perhaps provide insight and reason as to why some chronically ill children behave like they do (i.e. noncompliance with their medication). This course, "The Experience of Chronic Illness from the Developing Child's Perspective" serves as a model for other universities and medical schools who wish to offer courses that aim to expose their students to perspectives from both the professional and personal side of care. Chronic illness courses should incorporate skill objectives that included the ability to appreciate the importance of an interdisciplinary approach in viewing and managing chronic childhood illnesses, providing normalcy for the child and family, and teaching communication skills to facilitate the delivery of bad news. These types of health education courses offer students the opportunity to learn directly from those who care for children with chronic illness on a daily basis, but even more importantly, to learn from the children themselves who have lived with chronic illness.
| Acknowledgements|| |
The authors wish to thank Roger Newson for his statistical support.
| References|| |
|1.||Newacheck PW, Strickland B, Shonkoff JP, Perrin JM, McPherson M, McManus M, et al. An epidemiologic profile of children with special health care needs. Pediatrics 1998;102:117-23. |
|2.||Newacheck PW, Taylor WR. Childhood chronic illness: Prevalence, severity, and impact. Am J Public Health 1992;82:364-71. |
|3.||Jennison MH. The pediatrician and care of chronic illness. Pediatrics 1976;58:5-9. |
|4.||Boekaerts M, Röder I. Stress, coping, and adjustment in children with a chronic disease: A review of the literature. Disabil Rehabil 1999;21:311-37. |
|5.||Britto MT, DeVellis RF, Hornung RW, DeFriese GH, Atherton HD, Slap GB. Health care preferences and priorities of adolescents with chronic illnesses. Pediatrics 2004;114:1272-80. |
|6.||Carlson CE, Ricci J, Shade-Zeldow Y. Psychosocial aspects of disability in children. Pediatrician 1990;17:213-21. |
|7.||Christian B. Growing up with chronic illness: Psychosocial adjustment of children and adolescents with cystic fibrosis. Annu Rev Nurs Res 2003;21:151-72. |
|8.||Corsini E, Hoffman R, Knight F. Adolescent issues in renal treatment. Adv Ren Replace Ther 1998;5:120-7. |
|9.||Schmidt S, Petersen C, Bullinger M. Coping with chronic disease from the perspective of children and adolescents: A conceptual framework and its implications for participation. Child Care Health Dev 2003;29:63-75. |
|10.||Shudy M, de Almeida ML, Ly S, Landon C, Groft S, Jenkins TL, et al. Impact of pediatric critical illness and injury on families: A systematic literature review. Pediatrics 2006;118 Suppl 3:S203-18. |
|11.||Van Riper M. The sibling experience of living with childhood chronic illness and disability. Annu Rev Nurs Res 2003;21:279-302. |
|12.||Perrin EC, Lewkowicz C, Young MH. Shared vision: Concordance among fathers, mothers, and pediatricians about unmet needs of children with chronic health conditions. Pediatrics 2000;105:277-85. |
|13.||Darer JD, Hwang W, Pham HH, Bass EB, Anderson G. More training needed in chronic care: A survey of US physicians. Acad Med 2004;79:541-8. |
|14.||Nair BR, Finucane PM. Reforming medical education to enhance the management of chronic disease. Med J Aust 2003;179:257-9. |
|15.||Pham HH, Simonson L, Elnicki DM, Fried LP, Goroll AH, Bass EB. Training U.S. medical students to care for the chronically ill. Acad Med 2004;79:32-40. |
|16.||Petersen PE. The World Oral Health Report 2003: Continuous improvement of oral health in the 21 st century-the approach of the WHO Global Oral Health Programme. Community Dent Oral Epidemiol 2003;31 Suppl 1:3-24. |
|17.||Turner J, Pugh J, Budiani D. It's always continuing": First-year medical students' perspectives on chronic illness and the care of chronically ill patients. Acad Med 2005;80:183-8. |
|18.||Davis BE, Nelson DB, Sahler OJ, McCurdy FA, Goldberg R, Greenberg LW. Do clerkship experiences affect medical students' attitudes toward chronically ill patients? Acad Med 2001;76:815-20. |
|19.||Uijtdehaage S, Hauer KE, Stuber M, Rajagopalan S, Go VL, Wilkerson L. A Framework for Developing, Implementing, and Evaluating a Cancer Survivorship Curriculum for Medical Students. J Gen Intern Med 2009;24:491-4. |
|20.||Conatser C, Babcock HM. Children with cancer and medical students teach each other. Cancer Pract 1993;1:110-5. |
|21.||Moore B, Tonniges TF. The "every child deserves a medical home" training program: More than a traditional continuing medical education course. Pediatrics 2004;113 Suppl 5:S1479-84. |
|22.||Sontag S. Illness as metaphor; and, AIDS and its metaphors. 2001: Picador USA, 175 5 th Avenue, New York, NY 10010 |
|23.||Sourkes BM. Armfuls of time: The psychological experience of the child with a life-threatening illness. Med Princ Pract 2007;16:37-41. |
|24.||Sourkes BM. The deepening shade: Psychological aspects of life-threatening illness. Am J Hosp Care 1987;4:22-9. |
[Table 1], [Table 2]