Diabetes-specific distress among parents of youth with type 1 diabetes

Abstract

The purpose of the present investigation was to develop a reliable and valid measure of diabetes-specific emotional distress among parents of youth with type 1 diabetes. The Problem Area In Diabetes - Parent Survey (PAID-P) was developed by adapting a commonly used measure of diabetes-specific emotional distress among adult patients with diabetes (Polonsky, et al., 1995). Items from the original adult version that were deemed appropriate for childhood diabetes (n = 14) were retained, but were slightly reworded to shift the focus of emotional responses from the patient to the parental perspective. Additional items that tap unique aspects of living with and managing childhood diabetes (n = 6) were also developed. The adapted survey along with measures of family life were administered to the parents of 191 children aged 8 to 17 with diabetes who were followed at a tertiary diabetes treatment center. The youth also completed surveys of family interactions around diabetes management tasks. Principal components analysis confirmed the presence of one strong general factor which underpinned the items and supported the summation of the 20 items into a total score. Reliability analyses of the PAID-P established excellent internal consistency (alpha = .92). The PAID-P also demonstrated evidence of construct, discriminant, and concurrent validity. As assessed by this adapted survey, diabetes-specific emotional distress was common with 83% of parents reporting at least one serious concern (scoring ≥5 on at least one item) on the PAID-P. The most common concerns included: worrying about the future and the possibility of serious complications (70%), feeling scared when thinking about their child having/living with diabetes (49%), feeling upset when diabetes management is "off track" (48%). The research and clinical implications of this instrument are discussed.