Lisa Smith and Dr. Barbara Mandleco, College of Nursing
The American Academy of Pediatrics established a standard of care for children with chronic conditions in order to improve patient and family outcomes. Standards for medical care emphasize the care being 1)accessible, 2)continuous, 3)comprehensive, 4)family-centered, 5)coordinated, 6)compassionate, and 7)culturally effective. However, very little research has examined how well pediatric specialty clinics meet these AAP standards. The impact of services is critical to the well-being of the child and the family. Therefore, this study analyzes parent evaluations of Pediatric Diabetes Management Clinics (PDMC) in Utah. By analyzing the PDMCs according to the AAP’s standards, staff will be better able to ensure optimal care and outcomes for the pediatric patients and their families.
The data was gathered from parents at the PDMC. 85 parents (50 mothers, 35 fathers) who are raising a child with type 1 diabetes participated. Parents independently completed a questionnaire on their perceptions of the PDMC. The questionnaire was based on an instrument adapted from the AAP Division of Children with Special Needs Medical Home Assessment 2000. This instrument had 27 statements describing actions by actions by the medical staff (i.e. the PDMC staff responds quickly to requests for information, understands our health care plan) and allows a parent to rate the extent they agree or disagree, using a likert scale anchored by (4) most of the time to (1) never.
After gathering the data, we obtained descriptive statistics (means, standard deviations, frequencies, and percents) for each of the variables. T-tests were run to identify significant differences in the means for the variables according to parent gender. And correlation analyses were performed to identify if the age of the child with diabetes was related to perceptions.
These statistics showed statistically significant trends in all areas. Some of the results showed the younger the child with diabetes, the more mothers perceived staff believed their opinions were important. Overall, mothers had a more positive perception of the staff than fathers. This study implies that, in general, the PDMC’s are perceived as satisfactory according to the AAP standards. It seems that PDMC’s need to focus on care being more family-centered, coordinated, and culturally effective. The gender differences in perception show the need for greater emphasis to be given to meeting the needs of the fathers- especially in respecting beliefs, sharing information, comprehensiveness of care, and expectations of outcomes. Overall, the staff at these facilities need to show belief in the family’s opinions as being important, especially as the child grows older.
These results are being shared with the staff of the PDMC’s to allow them to examine the areas they need to improve. This study was also presented at the Mary Lou Fulton Mentored Research Conference 2008, and the BYU College of Nursing Research Conference in the form of a poster. This quantitative portion of the research is currently being correlated with qualitative data gathered from the same sample, and will eventually be formatted into a scholarly article to be submitted for publication.
The largest obstacle in this type of research is in the reliable gathering of data- assuring that all questionnaires are returned, completed, and correlated appropriately. The analyses of the data was something new for me to learn, and interesting to realize the data’s’ statistical significance. I have a background with some statistics, but was able to become more familiar with the computer software used to analyze this type of data.
This research project was a great experience that has enabled me to present at conferences, correlate with other researchers in other disciplines, and will potentially lead to publication. It has been an invaluable experience to allow me to further pursue research throughout my education and career.