OBJECTIVE -Youth with type 1 diabetes face long-term risks of health complications of the disease. Little is known about patients' and parents' knowledge, acquisition of information, and family communication regarding these complications. This paper reports qualitative analyses of parental focus-group discussions of this topic.RESEARCH DESIGN AND METHODS -A total of 47 participants (30 mothers, 14 fathers, and 3 others) representing 33 children between the ages of 8 and 18 years with type 1 diabetes participated in 1 of 13 focus groups. Open-ended questions focused on the type and amount of information about long-term complications presented to parents by health care professionals at different time points, as well as the way that information was presented. Questions also elicited details about parent-child communication and exposure to misconceptions about diabetes complications.RESULTS -Qualitative analysis of the transcribed focus groups revealed that participants experienced significant anxiety about diabetes complications, with a shift from concern about daily management tasks to concern about long-term complications over time. Participants desired a flexible, collaborative educational approach, especially regarding the timing and type of information, relative to the child's age and duration of diabetes. Many parents wanted more sensitive communication and emotional support from health care providers. Motivating children appeared to be a particular challenge; family burnout with regard to diabetes care over time was reported. Knowledge was gained in many ways, yet misinformation was uncommon.CONCLUSIONS -Obtaining information about long-term complications is an important process that changes over the course of the disease and with the child's developmental level. More research is needed, especially regarding youth knowledge, learning, and beliefs about diabetes complications.
Inadequate treatment adherence impedes achievement of glycemic control targets in type 1 diabetes (T1D). Valid and reliable measurement of treatment adherence is a prerequisite to rigorous evaluation of pertinent interventions. The diabetes self-management profile (DSMP), a structured interview measure of T1D adherence, is valid and reliable but it requires trained interviewers, it is labor intensive to administer and it is burdensome for research participants. We adapted the DSMP interview to create the DSMP-self-report questionnaire (DSMP-SR) for completion by parents and youth ≥11 yr old. The DSMP-SR was obtained during a cross-sectional study of 151 youth within the age range of 8 to <18 yr with T1D [male, 50.7%; racial minorities, 23%; mean age, 13.9 yr; T1D duration, 5.5 yr; hemoglobin A1c (HbA1c), 8.7%] and a parent of each. Parents and youth ≥11 yr old completed the DSMP-SR independently. The DSMP-SR had sound internal consistency (Cronbach's α: youth, 0.82; parent, 0.80), and parent-youth agreement, (r = 0.60, p < 0.001) and significant associations with HbA1c (r = -0.35 for youth and -0.46 for parents, p < 0.001), PedsQL quality of life scale (youth: r = -0.41, p < 0.001; parent: r = -0.40, p < 0.001) and, for parents but not youth, the Revised Diabetes Family Conflict Scale (r = -0.47, p < 0.001). Higher DSMP-SR scores were associated with lower HbA1c, better quality of life, and less family conflict. The DSMP-SR has similar psychometric properties to those reported elsewhere for the DSMP, yielding a convenient measure of T1D adherence.
Miscarried helping" is a pattern of frustration and conflict surrounding diabetes management as caregivers escalate their efforts to ensure adequate self-care by their children. This paper describes the development of a new measure of this construct and preliminary assessment of its psychometric properties. The 15-item Helping for Health Inventory (HHI) was developed based on the theoretical concept of "miscarried helping." Parents of adolescents with poorly controlled diabetes (n ϭ 40) who were enrolled in a behavioral intervention trial completed the HHI as part of a comprehensive assessment battery. Results confirmed adequate internal consistency (␣ ϭ .81) and 3-month test-retest reliability (r ϭ .74). The HHI correlated positively with parent-child conflict and parental nonsupport of treatment and inversely with youth and parent-reported adjustment to diabetes and youth-reported adherence to treatment. The HHI did not correlate significantly with the youths' metabolic control. This initial psychometric study on the HHI indicates that it is a reliable measure of "miscarried helping." In addition, this study represents the beginning of establishing the HHI as a valid measure and as an informative measure of the negative aspects of social support.
Introduction Phase III / IV clinical trials are expensive and time consuming and often suffer from poor enrollment and retention rates. Pediatric trials are particularly difficult because scheduling around the parent, participant and potentially other sibling schedules can be burdensome. We are evaluating using the internet and mobile devices to conduct the consent process and study visits in a streamlined pediatric asthma trial. Our hypothesis is that these study processes will be noninferior and will be less expensive compared to a traditional pediatric asthma trial. Materials/Methods Parents and participants, aged 12 through 17 years, complete the informed consent process by viewing a multi-media website containing a consent video and study material in the streamlined trial. Participants are provided an iPad with WiFi and EasyOne spirometer for use during FaceTime visits and online twice daily symptom reporting during an 8-week run-in followed by 12-week study period. Outcomes are compared with participants completing a similarly designed traditional trial comparing the same treatments within the same pediatric health-system. After 8 weeks of open-label Advair 250/50 twice daily, participants in both trial types are randomized to Advair 250/50, Flovent 250, or Advair 100/50 given 1 inhalation twice daily. Study staff track time spent to determine study costs. Results Participants have been enrolled in the streamlined and traditional trials and recuitment is ongoing. Conclusions This project will provide important information on both clinical and economic outcomes for a novel method of conducting clinical trials. The results will be broadly applicable to trials of other diseases.
OBJECTIVEPreviously, we studied clinicians’ and parents’ perspectives about what, when, and how youth with type 1 diabetes (T1D) and parents should be taught about major complications (MC) of T1D. Results showed that this topic creates considerable anxiety among youth and parents, that there is a perceived need to tailor these experiences to each patient’s circumstances, and that there is considerable variability in opinions about appropriate MC education. Prior studies did not measure youths’ or parents’ actual knowledge of complications, how they cope with that knowledge, or how these variables relate to T1D outcomes. The current study addresses these gaps.RESEARCH DESIGN AND METHODSThis article reports a cross-sectional study of 151 8- to 18-year-old youths with T1D and their parents in which their knowledge of MC (nephropathy, retinopathy, neuropathy, and cardiovascular disease) was ascertained by structured interview. Family communication about MC was assessed using a questionnaire validated in this study. Regression analyses explored youth age, parent and youth MC knowledge, and positive family communication about MC as predictors of T1D outcomes (hemoglobin A1c, treatment adherence, quality of life, and family conflict about T1D).RESULTSParental MC knowledge was not associated with any T1D outcome; greater youth MC knowledge predicted better treatment adherence. More frequent optimistic family communication about MC was associated with more favorable status on all outcomes.CONCLUSIONSOptimistic family communication about MC, more so than MC knowledge, predicted favorable T1D outcomes. Longitudinal studies are needed to confirm these associations and to evaluate pertinent psychoeducational interventions.
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