Holly Antal

Diabetes Complications in Youth Qualitative analysis of parents' perspectives of family learning and knowledge

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 childs 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 childs developmental level. More research is needed, especially regarding youth knowledge, learning, and beliefs about diabetes complications.

Youth and Parent Knowledge and Communication About Major Complications of Type 1 Diabetes Associations with diabetes outcomes

OBJECTIVE Previously, 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 METHODS This 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). RESULTS Parental 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. CONCLUSIONS Optimistic 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.

Validation of a self-report version of the diabetes self-management profile

Wysocki T, Buckloh LM, Antal H, Lochrie A, Taylor A. Validation of a self‐report version of the diabetes self‐management profile.

Youth and parent education about diabetes complications: health professional survey

Objective:  Avoiding complications is paramount in diabetes management, but little is known about how, when, and what diabetes professionals disclose to parents and youths about this topic.

Use of mobile devices and the internet for multimedia informed consent delivery and data entry in a pediatric asthma trial: Study design and rationale☆

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 non-inferior 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 a 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 recruitment 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.

Parent Report and Direct Observation of Injection-Related Coping Behaviors in Youth with Type 1 Diabetes

OBJECTIVE This study evaluated insulin injection coping by parental report and video observation in children 3 to <11 years old with diabetes. METHODS Caregivers of 61 youth with type 1 diabetes completed the Diabetes Injection Distress-Parent Report Form (DID-PRF); a subsample (n = 19; 30%) submitted video recordings of their childrens insulin injections. RESULTS The DID-PRF demonstrated acceptable internal consistency and moderately correlated with video recordings. Half of parents (n = 31; 51%) reported their childs history of insulin injection distress; 30% reportedly experienced distress ≥1 year after diagnosis. Current distress was reported for about half (n = 28) of children. More parent and child coping/distress behaviors was associated with younger child age. Children displayed more injection distress in their first month after diagnosis versus the most recent month. CONCLUSIONS Diabetes-related injection distress and associated coping behaviors should be further explored; longitudinal data and additional measurement development is warranted.

Psychological Impact of Writing about Abuse or Positive Experiences

Writing often helps people deal with trauma. To see if writing about childhood physical or sexual abuse, or positive experiences, helps, psychology undergraduates wrote for 20 minutes on 4 days about their abuse, a positive experience, or a trivial topic. Among 102 who began and 85 who completed pre-, post-, and 4-week follow-up measures of depression, anxiety, and suicidal ideas, abuse writers were more likely to discontinue, and positive writers were more depressed and anxious. Compared to pretest, all completers were less depressed, anxious, and suicidal at follow-up, but nonsignificantly different in health visits. Completers who wrote about abuse rated the study as more valuable than did those who wrote about positive experiences. College students who wrote about childhood physical or sexual abuse benefited from any type of structured writing assignment (where they interacted with a researcher and got extra credit) in terms of reduced anxiety, depression, and suicidal ideas, but they found value in writing about their trauma more than writing about innocuous topics.

Brief Report: Psychological Impact of Writing About Abuse or Positive Experiences

Writing often helps people deal with trauma. To see if writing about childhood physical or sexual abuse, or positive experiences, helps, psychology undergraduates wrote for 20 minutes on 4 days about their abuse, a positive experience, or a trivial topic. Among 102 who began and 85 who completed pre-, post-, and 4-week follow-up measures of depression, anxiety, and suicidal ideas, abuse writers were more likely to discontinue, and positive writers were more depressed and anxious. Compared to pretest, all completers were less depressed, anxious, and suicidal at follow-up, but nonsignificantly different in health visits. Completers who wrote about abuse rated the study as more valuable than did those who wrote about positive experiences. College students who wrote about childhood physical or sexual abuse benefited from any type of structured writing assignment (where they interacted with a researcher and got extra credit) in terms of reduced anxiety, depression, and suicidal ideas, but they found value in writing about their trauma more than writing about innocuous topics.

A cognitive approach for design of a multimedia informed consent video and website in pediatric research

OBJECTIVE Poor participant comprehension of research procedures following the conventional face-to-face consent process for biomedical research is common. We describe the development of a multimedia informed consent video and website that incorporates cognitive strategies to enhance comprehension of study related material directed to parents and adolescents. MATERIALS AND METHODS A multidisciplinary team was assembled for development of the video and website that included human subjects professionals; psychologist researchers; institutional video and web developers; bioinformaticians and programmers; and parent and adolescent stakeholders. Five learning strategies that included Sensory-Modality view, Coherence, Signaling, Redundancy, and Personalization were integrated into a 15-min video and website material that describes a clinical research trial. RESULTS A diverse team collaborated extensively over 15months to design and build a multimedia platform for obtaining parental permission and adolescent assent for participant in as asthma clinical trial. Examples of the learning principles included, having a narrator describe what was being viewed on the video (sensory-modality); eliminating unnecessary text and graphics (coherence); having the initial portion of the video explain the sections of the video to be viewed (signaling); avoiding simultaneous presentation of text and graphics (redundancy); and having a consistent narrator throughout the video (personalization). DISCUSSION Existing conventional and multimedia processes for obtaining research informed consent have not actively incorporated basic principles of human cognition and learning in the design and implementation of these processes. The present paper illustrates how this can be achieved, setting the stage for rigorous evaluation of potential benefits such as improved comprehension, satisfaction with the consent process, and completion of research objectives. CONCLUSION New consent strategies that have an integrated cognitive approach need to be developed and tested in controlled trials.

Learning about long-term complications of pediatric type 1 diabetes: Parents’ preferences

ABSTRACT This Internet study surveyed 321 parents of youth with type 1 diabetes about family education regarding long-term complications (LTC). Parents reported their LTC learning experiences and opinions about the amount/timing of LTC education. Parents reported intense worry about LTC, but focused initially on daily management. Most parents want input into their children’s LTC education and endorsed diverse methods to motivate children’s self-care. Parents felt that LTC education of younger children should be deferred for several months after diagnosis but that LTC education of parents and adolescents should begin soon after diagnosis. A flexible approach respecting parental preference is likely optimal.