This study of rural children with asthma and their parents/caregivers revealed several key differences in quality of life perceptions. For these rural parents/caregivers, quality of life measurements were very positive and their child's asthma symptoms or level of severity was the most influential factor in their overall quality of life perception as well as in their activity and emotional domain quality of life measurements. Parental total quality of life and activity quality of life were also associated with the number of workdays missed by the parents at follow-up. An optimal quality of life for rural individuals may be defined as the ability to perform normal daily functions in the presence or absence of symptoms. Rural parents are self-managers of their child's asthma due to access to care issues such as long distances required to seek medical care. Most families had to drive one hour or more to the nearest hospital or asthma specialist. This most likely translates into increased time missed from work and school. Therefore, when a child's asthma becomes so severe that the parent starts to miss work, the parent's perception of quality of life diminishes.
These results indicate the need for children with asthma and their parents/caregivers to gain and maintain optimal control of the child's asthma. To do so, health care practitioners must equip rural parents and children with the necessary skills and health education materials for effective self-management of asthma. In particular, health care providers should demonstrate and monitor proper asthma device technique and medicine usage, peak flow meter use, and ask the child to perform a return demonstration at each asthma care visit.
In contrast to the strong influence that the child's asthma severity had on parental quality of life, it was very interesting that parent/caregivers quality of life perceptions were not influenced by the asthma education program. This finding contrasts with the results of several studies that have indicated a positive relationship between asthma education and quality of life (Gallefoss,Bakke & Rsgaard, 1999
; Olajos-Clow,Costello & Loughheed, 2005
; Tatis, Remache & Dimango 2005
). However, disease severity may be a moderating factor in the amount of benefit derived from educational interventions aimed at behavior modification (Olajos-Clow et al.
). Perhaps the children's asthma severity level confounded the full benefits of our educational intervention due to children with more severe disease requiring a more intensive education intervention.
For rural children in this study, quality of life perceptions were unrelated to those of their parents. The fact that control children had a higher emotional quality of life at follow up is puzzling. However, this may be due to their participating in the study (the Hawthorne effect). For all children, the number of school days missed was significantly associated with the child's emotional quality of life. This was an indirect relationship where increased missed days of school was associated with a decrease in EQOL. This suggests that school attendance is a significant component of the rural child's life and that school may be the critical socialization site for rural children. Moreover, this need for socialization may indicate that school is the ideal location to deliver asthma education to rural children.
Although there was a trend for asthma symptoms and the number of hospitalizations to be associated with the child's emotional quality of life, these findings did not reach statistical significance. These results support previous research investigating the impact of asthma on the emotional health of children and adolescents. Okelo et al. (2004)
noted that poor asthma specific emotional quality of life was significantly associated with increased missed school days (p < .05) and a non-significant trend was seen for hospitalizations. Blackman and Gurka (2007)
noted that children with asthma not only miss more days of school than their counterparts without asthma, but children with asthma also have higher rates of depression and other behavioral disorders. When a child misses school or is in the hospital due to asthma, he or she may began to feel “different” from other children or classmates who are able to go to school or who are not consistently in the hospital due to asthma.
Parents overall had more positively skewed QOL scores than the children. This could possibly be attributed to social desirability on the part of the parent. Parents may not want to associate their child's health condition to their personal quality of life. It may also be that parents really feel that they have a positive quality of life despite having a child with asthma. Another possible explanation for the difference in parent and child QOL scores may be discrepancies in recall periods for traumatic events. Chen, Zeltzer, Craske and Katz (2000)
found that distressed children might show bias toward negative aspects of an event by excluding positive or neutral aspects. For example, a child experiencing one asthma attack in the last week may be more likely to say he or she was extremely bothered by asthma symptoms while forgetting that they may have had some less severe symptom days after treatments with a steroid. The trauma of the initial event may diminish any positive aspects that follow. As a plausible secondary explanation, children with asthma may not share their parents views about their illness (Gersharz, Eiser & Woodhouse, 2003
). Children living with asthma are experiencing their symptoms first hand versus parents or practitioners who only witness or hear about the symptoms. Children are the experts on their own feelings, activity limitations and symptoms. School age children, in particular, do not necessarily share each asthma event with their parents. They may omit reporting coughing in gym or at recess simply because they forget or possibly, because they do not want to be excluded from these events.
Differences in child and parental quality of life indicate the importance of communicating with the child and ascertaining the child's quality of life perceptions at each health encounter. Rural elementary school age children in this study had a much lower perception of quality of life than their parents. This discrepancy in quality of life has significant clinical implications in that it illustrates the fact that health care providers who speak only to the parent/caregiver during an asthma health care visit may miss a large amount of data that can help them to understand the child's health status. Clinicians cannot rely on parental report alone to provide insight into the child's quality of life (Callery et al., 2003
). Previous research has shown that for children under age 11, parent report alone did not predict a child's quality of life and only moderately correlated with child airway caliber and control (Callery et al.
). Nurse practitioners and physicians could benefit from a brief, easy to administer child quality of life questionnaire that could be completed verbally during a regular clinic visit (Eiser & Morse, 2001