PEDIATRICS Vol. 110 No. 2 August 2002, pp. 323-330
Parental Impressions of the Benefits (Pros) and Barriers (Cons) of Follow-up Care After an Acute Emergency Department Visit for Children With Asthma
Sharon R. Smith, MD*,
Gabrielle R. Highstein, PhD
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David M. Jaffe, MD*,
Edwin B. Fisher, Jr, PhD and
Robert C. Strunk, MD
* Division of Emergency Medicine
Division of Allergy and Pulmonary Medicine, Department of Pediatrics, St Louis Children’s Hospital, St Louis, Missouri
Division of Health Behavior Research, Departments of Pediatrics and Medicine, Washington University School of Medicine, St Louis, Missouri
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ABSTRACT
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Objective. Asthma morbidity, with increasing emergency department (ED) visits, is prevalent among low-income, urban children. Follow-up care after ED visits is infrequent. We developed and evaluated an instrument that describes the parental benefits (pros) and barriers (cons) of obtaining follow-up care for interventions to promote follow-up.
Methods. We enrolled a convenience sample of low-income, urban parents who brought their children to the ED for treatment of asthma. These parents rated 41 items about the pros and cons of making a follow-up visit. Principal component analysis was used to identify the underlying structure of the instrument.
Results. One hundred forty-seven participants were interviewed in the ED. Principal component analysis retained 24 total items, which were identified by this sample as highly associated with deciding to take their child to a follow-up visit. Two types of pros were identified, informational and attitudinal, including "ask the doctor questions," and " children with asthma are healthier if they see their doctor regularly." Two types of cons were identified, practical and attitudinal, including "I have to find transportation," and "I don’t need to see the doctor unless my child is sick." The mean total pro and con scores were 4.05 ± 0.63 and 1.73 ± 0.67, respectively.
Conclusions. The pros and cons are not unidimensional. Even among those with infrequent follow-up, pros were endorsed more highly than cons. Programs that target these pros and cons may improve adherence to follow-up and regular care for low-income urban children.
Key Words: asthma • emergency department • follow-up • benefits and barriers • pros and cons
Abbreviations: ED, emergency department • PCP, primary care provider
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INTRODUCTION
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Asthma is a substantial health problem among children worldwide. Prevalence rates are high and increasing.1,2 Morbidity attributable to asthma is increasing, with dramatically increased rates of hospitalization.2, 3 Although comprehensive care in the ambulatory setting can reduce morbidity from asthma, many parents bring their children to an emergency department (ED) for care rather than administering care for increasing symptoms early in the course of an exacerbation.3 For this reason, the ED is a frequent point of contact for low-income, urban children with asthma4,5 for both acute and chronic asthma management.4,6–10 Many parents believe that the ED is the appropriate place for a breathing emergency.
The National Asthma Education and Prevention Program issued comprehensive guidelines for diagnosis and treatment of asthma in 1991, with revision in 1997.11,12 One of the guidelines is a follow-up appointment with the primary care provider (PCP) within 72 hours of a visit to the ED. Although the ED functions in an important way to provide care for acute asthma, anxiety around symptoms and fatigue of the caregivers mitigate against any comprehensive education and planning. Other reasons that asthma education is not provided in EDs are insufficient provider time in the ED and the concept held by some ED providers that the PCP office is the appropriate location for the education. Prompt follow-up after an acute asthma ED visit can identify the factors that resulted in the development of symptoms severe enough to trigger the need for emergency services. Follow-up also allows planning for care to be given during the next exacerbation that will prevent development of severe symptoms. In addition, prompt referral back to the PCP will emphasize the need for ongoing, rather than episodic, care. More than 90% of urban children have an identified source of primary medical care, but an estimated 75% do not use this care for asthma.13,14
Better understanding of the barriers and benefits that influence the decision to seek follow-up care with the PCP may help health care providers encourage families to obtain regular asthma care from their PCP. One approach to studying benefits and barriers is the Transtheoretical Model of Behavior Change that has been a popular approach to promoting health behavior over the last 2 decades. In this model, individuals are expected to adopt a particular behavior only when its pros outweigh the cons.15 Although there are some studies that identify barriers to care observed by or reported to researchers,13,14 none have quantified parents’ views of such barriers or their importance. In addition, the research with the Transtheoretical Model has found that 1) initiation of behavior is better predicted by pros than cons, and 2) pros and cons can be independent of each other, ie, few perceived cons is not necessarily the same as many pros. Thus, the instrument development reported here was intended to measure parents’ salient pros as well as cons of follow-up with the PCP within 72 hours of their child’s ED visit for asthma.
The purpose of this study was twofold: to develop a questionnaire to elicit the strongest perceived pros and cons of seeking follow-up care with the PCP after an acute ED visit for urban children with asthma, and to analyze the identified pros and cons. Learning more about the parental perceptions of the pros and cons of follow-up care may help providers of medical care counsel parents more effectively about the value of regular care.
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METHODS
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Questionnaire Development
Following strategies of the Transtheoretical Model of Behavior Change, a questionnaire was developed to assess the perceived pros and cons to seeking follow-up care with the PCP. To develop this first generation Decisional Balance Instrument for Follow-up the sequential method of development was used.16–18 The sequential method of instrument development follows 5 steps: 1) Focus groups, 2) Generating a large number of questions using a theoretical model as a guide, 3) Q-sort of items into categories, 4) Administering the resulting draft questionnaire, and 5) Analysis to identify reliable and valid items. Analyses of the last step are repeated until the instrument developed only contains items that succinctly represent the focus of interest.
The Focus Group
The items for the questionnaire were derived from the responses of 4 focus groups for adult caregivers of children with asthma. The 4 focus groups were each composed of 10 African American parents from an urban neighborhood social services and health agency, Grace Hill. It was clear from the responses that most parents had experienced ED visits, although the frequency of ED visits was not elicited. Each group independently discussed difficulties with obtaining health care within their community and possible solutions to these problems. Several physician researchers, including pediatric emergency physicians, pediatric asthma specialists, and behavioral scientists who have extensive research and clinical experience in pediatric and inner city asthma, provided additional concepts for item development.
Writing Items
A behavioral scientist familiar with the Transtheoretical Model (G.R.H.) and a pediatric emergency physician (S.R.S.) wrote items using the combined information gathered in the focus groups as background. Two members of the community scanned these items for readability. To assure that the instrument covered the breadth of the concept of decisional balance, the items were written to incorporate the underlying dimensions suggested by the work of Janis and Mann: utilitarian gains and losses for self and others and approval and disapproval of self and others.19
Q-sorting of Items
Fellow researchers who were familiar with the concept of decisional balance were asked to sort pro items from con items. The researchers were asked to write comments about the clarity or simplicity of the items. Items that incorporated >1 idea or were confusing were rewritten or discarded. Forty-one items were successfully sorted into the correct categories and became the items for the initial questionnaire (Table 1).
Administering the Items
Caregivers whose children presented to St Louis Children’s Hospital Emergency Unit with an acute exacerbation of asthma were enrolled as a convenience sample. One hundred fifty subjects were approached, and 147 completed the questionnaire in the ED between 7:00 AM and 11:00 PM, Monday through Friday, from October 15, 1998, to November 9, 1998. Ninety percent of the respondents were mothers, 5% fathers, 4% grandmothers, and 1% legal guardians. As the majority of caregivers were parents, we refer to the subjects as parents throughout this article. Inclusion criteria consisted of being the parent of a child with asthma aged 2 through 12 years with no insurance or public aid (Medicaid) for payment. One hundred thirty-seven of the children had insurance coverage through public aid (93%), and 10 (7%) were self-pay. These criteria were chosen to obtain a cohort of parents with low-income, urban children who are at greatest risk for morbidity from asthma. A child was considered to have asthma if he or she presented to the ED with a clinical picture consistent with an acute asthma exacerbation, and either the parent stated they had asthma or they reported 2 or more wheezing episodes without another cause. The ED physician confirmed the diagnosis whenever it was unclear. Parents of a child with a chronic illness associated with wheezing, such as cystic fibrosis or bronchopulmonary dysplasia, were excluded from the study. Parents whose children did not have a PCP were also excluded. All children were treated for asthma using a standardized asthma algorithm. Washington University School of Medicine Human Studies Committee approved this study, and informed consent for participation was obtained from all parents.
Three research assistants were trained by the investigators to administer the pros and cons questionnaire. One assistant administered the questionnaire to 63% of the parents during the evening shift. Other questionnaires were administered during the day shift with 25% done by a second assistant and 13% by a third. The questionnaire had an introductory explanation that was read to the parent. "The following statements represent different opinions about going to a follow-up visit with your Primary Care Physician after your child has been in the Emergency Department or ER for asthma. Please rate HOW IMPORTANT each statement is to your decision to go to a follow-up visit according to the following 5 point scale with Extremely Important = 5 and Not Important = 1." The research assistants were taught to sit next to the parent so that the parent could see the page of questions.
Analysis
The item reduction technique, principal component analysis, was used to identify the underlying structure of the instrument and in the process to identify well-defined items and to discard ambiguous and confusing ones. This technique gives each item a numerical value called a loading that expresses its association with underlying dimensions of the test. Like correlation coefficients, loadings can range from –1.0 to + 1.0. Thus, the loadings show how much each item is contributing to explaining the 2 concepts, the pros and the cons of going to a follow-up visit. Items that contribute very little have a low numerical value and are poor items. Items that show a high loading, >0.50, on either the pros or cons, are considered desirable for a useful instrument. Items with a loading value <0.40 or that contributed to both the pros and cons were eliminated.
Alpha reliabilities test the internal consistency of the pro and con items, that is, the extent to which a set of items that are thought to measure the same thing do, in fact, "hang together."20 Reliabilities >0.50 are considered acceptable and >0.70 are good. Lastly, a cluster analysis, a statistical procedure that looks for similarities in individual’s response patterns, determined whether there were distinct groups of parents who had similar response patterns.
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RESULTS
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From the 41 items of the questionnaire, principal component analysis identified 24 that reflected substantive dimensions of parents’ reasons for obtaining or not obtaining follow-up care. In fact, 4 distinct subcategories or dimensions of items, 2 subcategories of pros and 2 subcategories of cons, were identified. The items in each of these dimensions are listed in Table 1 along with loadings, distributions, and means for each item. Table 2 contains the original 41 items with their respective loadings. There were 14 loadings. The 14 pro items include 9 that were "informational" (loading: 0.45–0.64, 
reliability: 0.75). These include such things as "ask the doctor questions," "find out if my child is better," and "ask about triggers or things that worsen asthma." Five pro items were related to attitudes and positive beliefs about the benefits of regular visits (loading: 0.50–0.85, reliability: 0 0.73). The most highly endorsed of these was " children with asthma are healthier if they see their doctor regularly." There were 10 con items. Six of the con items emphasized practical considerations that make it difficult to go to a follow-up visit (loading: 0.50–0.82, reliability: 0.76), including "find transportation" and "forces me to take time off work." Four con items were related to negative attitudes and beliefs (loading: 0.51–0.71, reliability: 0.52), such as "I don’t need to see the doctor unless my child is sick." The mean total pro and con scale scores and standard deviations were 4.05 ± 0.63 and 1.73 ± 0.67, respectively.
To examine patterns of scores on these items, the parent’s scale scores for the 4 subcategories of reasons (Informational Pro items, Attitudinal Pro items, Practical Con items, and the Attitudinal Con items) were entered into a cluster analysis. The scale score used was the standardized mean score of the parent’s responses averaged for each group of items. A score of 50 represents the mean response with the standard deviation set at 10. Following standard procedures for identifying the best fitting clusters of parents, 3 clusters showed distinct answer patterns (Fig 1). The clusters were named by the investigators after analysis and were based on the profile patterns. Cluster One, named Well Informed (N = 64), contains a group of parents whose scores on the Information Pro items and Practical Con items were above the standardized mean of 50 but for whom both the Attitudinal Pros and the Attitudinal Cons fell below the mean. Cluster Two, named Poorly Informed (N = 37), contained parents whose responses on all four scales were below the mean, but whose scores on the Attitudinal Pros and Attitudinal Cons were higher than the Informational Pro and Practical Con items. Cluster Three, named Good Attitude (N = 46), is made up of parents who responded above the mean on all four scales, the peak being for Attitudinal Pros which was a full standard deviation above the mean.
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DISCUSSION
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This questionnaire elicited distinct pros and cons for obtaining follow-up care from urban parents of children with asthma. Pro and con items from the questionnaire were each divided into 2 separate categories. Furthermore, the 4 categories have distinct concepts, indicating that neither the pros nor the cons are unidimensional and parents may rate one type higher than another. For example, one parent’s follow-up behavior may be influenced by his/her negative attitudes and beliefs about asthma care ("feel they don’t need to see a doctor unless the child is sick"), whereas another parent may find that practical considerations ("means I have to pay for transportation") negatively influence their follow-up behavior. These differences suggest that tailored intervention strategies, matched to the parent’s distinct pro and con profile, may be more likely to impact follow-up behavior than generalized approaches.
A unique aspect of this questionnaire is the assessment of the perceived benefits or pros to obtaining follow-up and regular asthma care. Review of the literature did not reveal any studies that sought to elicit parental perceptions about the benefits of regular asthma care. This study identified practical pros such as getting asthma information, asthma medications, and referral to a specialist. Some pros reflect a parental attitude of "feeling good" about helping their child and decreasing asthma symptoms if regular care is obtained. Talking with parents in the ED about going to a follow-up visit so they can "find out if" their child is better and reminding them about "getting information" or medications for school as a benefit may reinforce a parent’s likelihood of obtaining follow-up care.
The parents in this study endorsed 10 con items. Six cons were practical considerations, such as difficulty obtaining transportation, finding child care for other children in the family, and finding time to go to the physician visit. These cons are similar to those identified in other studies.6,21 A multicenter asthma survey showed that > 50% of respondents reported that they had difficulty obtaining care for acute exacerbations and obtaining follow-up care.13 The reasons listed included: difficulty getting an appointment, paying for care, child care, transportation, and language barriers.
In addition to the more practical barriers, this study also identified beliefs or ideas that may negatively influence urban parents in seeking follow-up asthma care. Parents in our study population identified the influence of their own health beliefs on follow-up and regular asthma care. These con items (Table 1) include the family’s belief that a child only needs to see a doctor if sick and that the child’s family provides good advice and the follow-up visit is not needed. A recent study3 also cited health beliefs as barriers to care including the parent’s attitudes and beliefs about medication use, "attitude toward the disease" (the disease effects on quality of life for the patient and family), and lack of trust or satisfaction with the health care providers. Mansour noted the importance of incorporating the families’ health beliefs into the asthma management plan in their study of barriers to asthma care. Developing interventions, which address both the positive and negative parental beliefs about asthma care, may help to improve attendance at these visits.
Surprisingly, the cons on this questionnaire were not highly endorsed. The highest mean for a con item was 2.55 (2 = Slightly Important and 3 = Moderately Important). Other studies, which evaluated barriers to care, did not try to quantify how important or influential their barriers were, but simply identified them. The low endorsement of con items may be explained by parents’ desire for social approval, misunderstanding of the questionnaire, or that the questionnaire did not query all significant cons. It is also possible that these cons are the most influential barriers although the mean scores are not high. But this study identified cons that were similar to those in other studies.
The discrepancy between the responses on this questionnaire and known follow-up behavior of similar parents in this population is of concern. From a behavioral perspective, people engage in behaviors that reward them in some way and fail to engage in behaviors for which the effort or other disadvantages are great. Thus, the generally observed low level of follow-up care in this and similar samples would suggest that parents may not appreciate the benefit of follow-up care. But, the high responses to the pro items on this questionnaire suggest that the parents have some belief that follow-up care has benefits. How to interpret these apparently contradicting patterns is not clear. It is possible that only a small percentage of the parents have actually experienced either a follow-up visit or benefit from a visit. Parents did not highly endorse the cons, which may also reflect never having had or attempted a follow-up visit. It may be that this pattern of attitudes reflects a readiness to be "won over" by the value of regular care were parents to be exposed to it. Other observations in this population indicate that this exposure approaches zero.22 If this is the case, interventions which somehow induced parents to sample regular care (perhaps by substantial incentives) might initiate these visits so that parents would then either recognize the barriers as more problematic or realize the pros they anticipate. Very low negative correlations between Informational Pros and Practical Cons (–0.2, range and median) and very low positive correlations between Attitudinal Pro and Con items (0.2, range and median) reinforces the concept that the Pros and Cons are not merely mirror images of each other but separate concepts. There were no significant correlations between Informational Pro items and Attitudinal Con items or between Attitudinal Pro items and Practical Con items. Thus, the 2 subtypes of pro items (Informational and Attitudinal) and 2 subtypes of con items (Practical and Attitudinal) seem to be 4 unique concepts, each of which may offer understanding of the complex reasons that parents have to weigh when deciding to take their child to a follow-up visit after an ED visit.
Cluster analysis of the parent’s responses to the questionnaire revealed 3 different groups of parents that were named by the investigators: Good Attitude (N = 46), Well Informed (N = 64), and Poorly Informed (N = 37). According to the Transtheoretical Model, parents who endorse more pros than cons are more likely to obtain follow-up asthma care. The Good Attitude Cluster (Attitudinal Pros > Informational Pros and both Cons) represents parents whose follow-up behavior is likely to be influenced by their positive belief’s about health care. In the Well-Informed cluster (Informational Pros > Attitudinal Pros and both Cons) the likelihood of going to a follow-up visit is influenced by parent appreciation of obtaining asthma information at the visit. The Poorly Informed cluster (Informational Pros < Practical and Attitudinal Cons and Attitudinal Pros) contains parents whose lack of information about asthma care is likely to prevent them from seeking a follow-up visit. Prediction of actual follow-up behavior by this questionnaire’s assessment of pros and cons and its defined clusters is currently under study and will be important to further refine interventions to improve follow-up.
There are several limitations of this study. This is a convenience sample of parents gathered only on weekdays before 11 PM. It is possible that there could be differences in the pros and cons for parents who present to the ED at other times. In our ED, there have been no demographic differences between children who present with asthma day versus night and weekend versus weekday; however, we do not have information on actual follow-up behavior based on time of an ED visit. Thus, the present appears to be an unbiased sample of the low-income, underserved, urban groups who carry disproportionate asthma burdens in our culture.
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CONCLUSION
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A 24-item questionnaire was developed to assess parents’ perceived pros and cons of follow-up care for asthma. The pros and cons are not unidimensional. Analysis discovered 4 distinct dimensions: 9 Informational Pros, 5 Attitudinal Pros, 6 Practical Cons, and 4 Attitudinal Cons. A cluster analysis identified 3 groups of parents with distinctive patterns of pros and cons. Additional refinement of this instrument to develop a second-generation questionnaire is planned. At that time, we will attempt to replicate the clusters to see if the solution is stable across different populations. We will also gather data on actual follow-up behavior to test the relationship between the characteristics of parents as defined by our clusters and actual behavior in making follow-up appointments. Interventions tailored to target pros and cons may improve adherence to follow-up and regular care for low-income urban children.
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ACKNOWLEDGMENTS
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This study was supported by a grant from the National Institutes of Health and the National Heart, Lung, and Blood Institute (HL 57232).
We thank Marvin Petty, Linda Gilbert, and Vanetta Worthy for their wonderful work enrolling subjects and collecting data. We also thank the St Louis Children’s Hospital Emergency Unit staff for their support and assistance in carrying out this study.
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FOOTNOTES
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Received for publication Sep 14, 2001; Accepted Feb 13, 2002.
Reprint requests to (S.R.S.) Division of Emergency Medicine, St Louis Children’s Hospital, 1 Children’s Place, St Louis, MO 63110. Email: smith_s{at}kids.wustl.edu
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PEDIATRICS (ISSN 1098-4275). ©2002 by the American Academy of Pediatrics
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ABSTRACT
INTRODUCTION
