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Title: Characterizing worries in parents of youth with type 1 diabetes

item ESHTEHARDI, SAHAR - Baylor College Of Medicine
item CAO, VIENA - Baylor College Of Medicine
item MCKINNEY, BRETT - Indiana University School Of Medicine
item ANDERSON, BARBARA - Baylor College Of Medicine
item Thompson, Deborah - Debbe
item MARRERO, DAVID - University Of Arizona
item HILLIARD, MARISA - Baylor College Of Medicine

Submitted to: Meeting Abstract
Publication Type: Abstract Only
Publication Acceptance Date: 11/16/2018
Publication Date: 4/5/2019
Citation: Eshtehardi, S.S., Cao, V.T., McKinney, B.M., Anderson, B.J., Thompson, D.J., Marrero, D.G., Hilliard, M.E. 2019. Characterizing worries in parents of youth with type 1 diabetes [abstract]. Society of Pediatric Psychology Annual Conference (SPPAC). April 4-6, 2019; New Orleans, LA. Poster Session 3, Poster 3.

Interpretive Summary:

Technical Abstract: Parents of youth with type 1 diabetes (T1D) often express concerns and worries about their children's health and diabetes management. Prior research has mostly quantified parental concerns about specific aspects of T1D, such as hypoglycemia, but little research has aimed to characterize the broad range of parental worries associated with T1D management. Describing the scope of parental worries may inform the development of behavioral interventions that target a multiple concerns commonly experienced by parents, with the goal of reducing parental distress and enhancing effective family teamwork around youths' diabetes management. As part of a larger qualitative study on diabetes health-related quality of life, 33 parents (94% mothers) of youth with T1D (age 5-17 years, M age=9.8+/-3.5 years; 33% female) completed semi-structured interviews about their experiences parenting a child with T1D, including worries related to their child's diabetes. Interviews were transcribed verbatim, coded using NVivo software, and interpreted using content analysis to derive central themes. Four themes emerged related to diabetes-related worries in parents. Parents described: (1) Experiencing relentless, constant worry about their child's diabetes, describing diabetes-related concerns as "always in the back of my mind." (2) Short-term worries about current diabetes problems, day-to-day management demands, and safety, such as the parent and child's ability to detect and treat dangerously low and high blood glucose levels, especially overnight. (3) Worries about the long-term impact of diabetes management on their children's health outcomes, including concerns about chronic hyperglycemia in childhood resulting in future medical complications and/or a shortened lifespan. (4) Concerns regarding diabetes interfering with their child's social relationships or the child being teased about having T1D or doing management tasks (e.g., blood glucose monitoring, insulin administration) in public. Parents described a spectrum of T1D-related concerns, ranging from current risks and stressors to future health complications, and reported having no relief from the constant state of worry. Pediatric psychologists working with families living with T1D may benefit from assessing parental worries in these four areas and integrating parent-focused intervention components targeting these issues. Providing support to help parents better manage diabetes-related worries and identify supportive roles for family members may reduce parental diabetes distress, facilitate effective family diabetes management, and ultimately improve children's glycemic outcomes.