Published online November 1, 2005
PEDIATRICS Vol. 116 No. 5 November 2005, pp. 1095-1104 (doi:10.1542/peds.2004-1981)
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Parents’ Perceptions of Factors That Affect Successful Diabetes Management for Their Children

Kenneth R. Ginsburg, MD, MSEd*,{ddagger}, Carol J. Howe, RN, MSN*, Abbas F. Jawad, PhD*,§, Marianne Buzby, MSN, CRNP*, Judith M. Ayala, LCSW*, Alan Tuttle, LCSW* and Kathryn Murphy, RN, PhD*

* Division of Endocrinology
{ddagger} The Craig-Dalsimer Division of Adolescent Medicine
§ Division of Biostatistics and Epidemiology, Department of Pediatrics, The Children’s Hospital of Philadelphia, University of Pennsylvania School of Medicine, Philadelphia, Pennsylvania

Objective. To learn which factors parents perceive to be most influential in determining successful type 1 diabetes management.

Methods. A 4-stage mixed qualitative-quantitative method that consists of a series of focus groups, a survey, and in-depth interviews was used to ensure that parents generated, prioritized, and explained their own ideas. In each stage, parents offered a new level of insight into their perception of how children achieve good metabolic control while living as normal a life as possible. The survey responses were divided into statistically different ranks, and the Kruskal-Wallis test was used to compare the results between subgroups.

Results. A total of 149 parents participated in the formative qualitative phases, 799 families (66%) responded to the parent-generated survey, and 67 explanatory interviews were conducted. The families who responded to the survey had children of varied ages (mean: 11.9 years; SD: 4.44) and diabetes control (mean hemoglobin A1c: 8.22%; SD: 1.65); 84.1% of respondents were white, 12.3% were black, and 89% were privately insured. The 30 survey items were statistically discriminated into 8 ranks. The items cover a wide range of categories, including concrete ways of achieving better control, families’ or children’s traits that affect coping ability, actions of the health care team that support versus undermine families’ efforts, and the availability of community supports. No clear pattern emerged regarding 1 category that parents perceived to matter most.

Conclusions. Clinicians can affect many of the factors that parents perceive to make a difference in whether they can successfully raise a resilient child in good diabetes control. Future research needs to determine whether health care teams that address the concerns that parents raised in this study are more effective in guiding children to cope well with diabetes, to incorporate healthier lifestyles, and ultimately to achieve better metabolic control.

Key Words: child • adolescent • professional–patient relationships • provider–parent relationships • focus groups • survey • qualitative research • diabetes • patient satisfaction

Abbreviations: HbA1c, hemoglobin A1c • CI, confidence interval • NGT, nominal group technique • SES, socioeconomic status

Accepted Feb 4, 2005.




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