Kalie Diane Thornock and Dr. Barbara Mandleco, College of Nursing
One in every 400-600 young people in the United States are diagnosed with Type 1 diabetes (Centers for Disease Control and Prevention, 2005), a disease requiring constant vigilance to ensure continued health. Therefore, regular medical appointments to monitor hemoglobin A1C, LDL cholesterol level, blood pressure, eyes, and feet are needed along with special dietary and medication considerations for successfully managing diabetes (Saaddine et al., 2006). Consequently, the unique medical needs of children/adolescents with diabetes are often best met through a specialty clinic designed exclusively for pediatric patients with diabetes rather than a generalized pediatrician’s office or children’s hospital (US Department of Health and Human Services, 2000). These specialty clinics, sometimes called Medical Homes for pediatric patients, are a relatively new resource that is meant to be “accessible, continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective” (American Academy of Pediatrics, 2002, p. 184). However, little research examining parents’ perceived effectiveness of these specialty clinics exists. Therefore, this study is focused on parental perceptions of the strengths and weaknesses of Pediatric Diabetes Management Clinics (PDMCs) and suggestions on how clinics could be improved to provide better care for their child/adolescent and family. Understanding parents’ perceptions of pediatric specialty clinics will help improve the care provided in these settings and lead to better diabetes management for pediatric patients. The purpose of this study is to ascertain parents’ perceptions of PDMCs and evaluate how clinics can improve their services through evaluating the answers to four research questions.
The research questions I asked for this project are: “What are parents’ perceptions of strengths/weaknesses of the PDMCs?”, “Do themes differ according to parent gender?”, “What suggestions do parents have for improving clinic services?”, and “Do the suggestions differ according to parent gender?” To answer these questions, responses from sixty-five sets of parents raising children/adolescents with Type 1 diabetes who attended PDMCs and completed an open ended questionnaire regarding the strengths, weaknesses, and suggestions for improvement of the clinic were transcribed verbatim and analyzed according to qualitative methodology. Direct quotes most accurately representing the categories and themes for the strengths, weakness, and suggestions for improving the clinic were identified. Differences between fathers’ and mothers’ responses for the strengths, weaknesses, and suggestions are noted.
Through this research, I discovered that mothers’ and fathers’ responses to the major strength of the PDMCs were very similar: 40.9% of mothers and 33.3% of fathers mentioned “perceptive care” (the PDMCs being aware of or perceptive to child/family needs and/or their care in general) followed by “knowledge/education” (36.36% mothers, 37% fathers) and “staff” (25% mothers, 33.3% fathers). The major weakness for both parents was “accessibility” (31.82% mothers; 18.5% fathers). The second most common theme for mothers was “staff” (9.1%). The second and third most common themes for fathers were “understanding” (14.8%) and “staff” (11.11%). Interestingly, 25.9% of fathers left this question blank and 22.73% of mothers did not answer the question. For suggestions to improve the PDMCs, fathers again most commonly left this question blank (29.6%). Mothers had minimal suggestions with most responses reflecting their satisfaction with the clinic (27.27%). However, for those themes related to the question, analysis indicated differences based on parent gender: 16% of mothers responded “increased communication” whereas fathers did not see this as needing improvement (0%). Conversely, 7.4% of fathers’ responses were coded as “increased efficiency”, whereas mothers did not identify this as a suggestion (0%). Finally, 11% of both mothers’ and fathers’ responses were coded as “staff.”
From these results, I was able to conclude that PDMCs are successful in providing perceptive care, knowledge, and education to their patients. The PDMC may want to improve accessibility and recognize the needs of mothers related to communication and fathers related to efficiency. The interesting finding that staff was a major strength, a major weakness, and mentioned as a suggestion for improvement needs further exploration, indicates individual family perceptions, and calls for delivering individualized care to families raising children with diabetes.
Overall, this experience has influenced my learning in such a way that I know I will continue to benefit from it for the remainder of my life. It has provided an opportunity for me to actively participate in every aspect of the research process. This has shown me that I am capable of producing real results that can influence my future practice as a nurse as well as the practice of others so we, as nurses and health care professionals, are able to provide the best possible patient care. I will take this confidence with me as I graduate and begin to work in a hospital and continue my education through graduate schooling. This research experience has impressed upon me the importance of looking for opportunities in my future to participate in research projects to further my education and to provide data and results to influence my practice and the practice of others. I am continuing to use the skills I have gained through working on this research project as I am currently working on a new research project to evaluate nurses’ perceived barriers to compliance with a specific protocol in the Emergency Department at Primary Children’s Medical Center in Salt Lake City, Utah. I am so grateful for the donors who funded my ORCA experience. They have made a lasting difference in my life which I hope, through continuing to participate in research, to translate into a lasting difference in the lives of countless others.
I am presenting the results of my project on November 3, 2008 at the Nursing Research Conference sponsored by Intermountain Health Care, Brigham Young University, and Sigma Theta Tau Iota, Iota Chapter, to be held in Provo, Utah. In addition to this presentation, I am also currently applying to present my results at other national and international nursing conferences and I am working on submitting a scholarly write up of my findings to various nursing journals.
- American Academy of Pediatrics. (2002). American Academy of Pediatrics medical home policy statement. Pediatrics, 110(1), 184-186.
- Center for Disease Control and Prevention. (2005). National diabetes fact sheet. Retrieved October 8, 2007, from http://apps.nccd.cdc.gov/DDTSTRS/template/ndfs_2005.pdf
- Saaddine, J. B., Cadwell, B., Gregg, E. W., Engelgau, M. M., Vinicor, F., Imperatore, G., et at. (2006). Improvements in diabetes processes of care and intermediate outcomes: United States, 1988-2002. Annals of internal medicine, 144(7), 465-475.
- US Department of Health and Human Services. (2000). Maternal, infant, and child health. In Healthy people 2010 objectives for improving health (part B, chap. 16). Retrieved October 8, 2007, from http://www.healthypeople.gov/document/html/volume2/16mich.htm#_Toc494699660