Jessica Pierce

Topical Review: Advancing Research on the Transition to Adult Care for Type 1 Diabetes

OBJECTIVE To acknowledge and address the gaps in health care transition (HCT) in type 1 diabetes (T1D) literature by proposing an expanded model that could guide future research. METHOD Topical literature review. RESULTS Empirical research examining the outcomes of HCT in T1D is limited by methodological and interpretive problems. The relevant evidence indicates that HCT outcomes are both multi-systemic and multidimensional; the authors propose an expanded model that incorporates multiple stakeholder perspectives of HCT outcomes. CONCLUSIONS The development and validation of a standard index of HCT outcomes based on the expanded model of HCT outcomes could provide a means for assessing relations between HCT readiness and outcomes, facilitate the design of longitudinal studies to determine the predictive validity of HCT readiness assessment and the efficacy of HCT interventions, and inform the design and evaluation of appropriate interventions targeting those mechanisms.

Type 1 diabetes in very young children: a model of parent and child influences on management and outcomes.

The incidence of type 1 diabetes (T1D) in very young children (YC‐T1D) is increasing globally. Managing YC‐T1D is challenging from both a medical and psychosocial perspective during this vulnerable developmental period when complete dependence upon parental caretaking is normative and child behavior is unpredictable. The consequences of suboptimal glycemic control during this age range are substantial since these children will have T1D for many years and they are prone to adverse neuropsychological sequelae. Poor adaptation to T1D during these early years may engender a persistent trajectory of negative outcomes that can be very resistant to change. The empirical research on the YC‐T1D population (age <6 yr) has indicated multiple mechanisms through which parent characteristics, parent coping skills, and child characteristics interact to yield a pattern of T1D management behaviors that affect T1D outcomes. However, this research has not yet led to a well‐conceived conceptual model for identifying and understanding these mechanisms or for specifying research gaps and future research directions. The aim of this review is to propose such a conceptual model linking parent characteristics, parent coping, and child characteristics to T1D management behaviors and outcomes. This article reviews the literature focusing on research pertinent to YC‐T1D and elements of our proposed model, identifies and discusses gaps in the literature, offers directions for future research, and considers a range of possible interventions targeting the unique needs of this special population.

Consideration of Insulin Pumps or Continuous Glucose Monitors by Adolescents With Type 1 Diabetes and Their Parents Stakeholder Engagement in the Design of Web-Based Decision Aids

Purpose This article describes the stakeholder-driven design, development, and testing of web-based, multimedia decision aids for youth with type 1 diabetes who are considering the insulin pump or continuous glucose monitoring and their parents. This is the initial phase of work designed to develop and evaluate the efficacy of these decision aids in promoting improved decision-making engagement with use of a selected device. Methods Qualitative interviews of 36 parents and adolescents who had previously faced these decisions and 12 health care providers defined the content, format and structure of the decision aids. Experts in children’s health media helped the research team to plan, create, and refine multimedia content and its presentation. A web development firm helped organize the content into a user-friendly interface and enabled tracking of decision aid utilization. Throughout, members of the research team, adolescents, parents, and 3 expert consultants offered perspectives about the website content, structure, and function until the design was complete. Results With the decision aid websites completed, the next phase of the project is a randomized controlled trial of usual clinical practice alone or augmented by use of the decision aid websites. Conclusions Stakeholder-driven development of multimedia, web-based decision aids requires meticulous attention to detail but can yield exceptional resources for adolescents and parents contemplating major changes to their diabetes regimens.

ISPAD Clinical Practice Consensus Guidelines 2018: Management and support of children and adolescents with type 1 diabetes in school

The average global incidence rates of children newly diagnosed with type 1 diabetes (T1D) is increasing by 3 to 4% per annum (1). Many countries have also reported that children are much younger at the time of diagnosis (2), with the greatest increases in incidence rate observed in the those aged under 5 years (3). This article is protected by copyright. All rights reserved.

A retrospective analysis of boarding times for adolescents in psychiatric crisis

ABSTRACT The boarding of children and adolescents with identified psychiatric conditions at medical facilities has numerous negative effects on the patients and the systems that treat them. Efforts to minimize boarding times serves to increase patients’ access to appropriate levels of care, redirect medical resources to patients who need them most, and reduce safety risks to people and property. This study explores the role Clinical Social Workers can play in facilitation of care and highlights the advantages of a coordinated data collection process facilitated by the effective use of the Electronic Medical Record. A retrospective chart analysis of 100 patients admitted to the Emergency department at a pediatric hospital in Central Florida was conducted for patients seen between 1 January 2015 and 30 June 2016. The data suggest key correlates that may impact the boarding times of pediatric patients presenting in a psychiatric crisis and the average duration of boarding time in hours (M = 5.11, SD = 2.07) was found to be significantly lower than prior published studies in the adult and pediatric literature. Discussion of these data implications on behavioral health practice is discussed.

Development and Validation of the Pediatric Diabetes Routines Questionnaire for Adolescents

This study describes the development and psychometric evaluation of an adolescent self-report version of the Pediatric Diabetes Routines Questionnaire (PDRQ:A), a measure of diabetes-specific routines for youth with type 1 diabetes, and further validation of the parent-version (PDRQ:P) in an adolescent sample. Participants included 120 parent–adolescent dyads (ages 12–17) and an additional 24 parents who completed measures of diabetes-specific adolescent routines, general adolescent routines, diabetes self-care, and family support of youth diabetes care. The PDRQ:P/A demonstrated good internal consistency, test–retest reliability, and parent–child agreement, and adequate validity coefficients. Confirmatory factor analysis supported a one-factor model. Promising results were obtained. The PDRQ:P/A is a clinically feasible parent- and self-report measure that can provide valuable information regarding how frequently adolescents engage in their diabetes management tasks in a consistent manner. Addition of an adolescent report format will enhance the utility of the measure for clinical and research use.

User-Centered Design of an Online Coping Intervention by and for Parents of Very Young Children with Type 1 Diabetes (Preprint)

Background Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents’ ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered design (UCD) of a continuously accessible Web-based resource could be a mechanism for helping parents of YC-T1D cope more effectively with the complex challenges they face by providing them with information, solutions, and emotional support. Objective The objectives of this paper are to (1) describe the application of UCD principles to the development of a Web-based coping intervention designed by and for parents of very young children (<6 years old) with T1D; (2) illustrate the use of crowdsourcing methods in obtaining the perspectives of parents, health care providers, and Web development professionals in designing and creating this resource; and (3) summarize the design of an ongoing randomized controlled trial (RCT) that is evaluating the effects of parental access to this resource on pertinent child and parent outcomes. Methods This paper illustrates the application of UCD principles to create a Web-based coping resource designed by and for parents of YC-T1D. A Web-based Parent Crowd, a Health Care Provider Crowd, and a Focus Group of minority parents provided input throughout the design process. A formal usability testing session and design webinars yielded additional stakeholder input to further refine the end product. Results This paper describes the completed website and the ongoing RCT to evaluate the effects of using this Web-based resource on pertinent parent and child outcomes. Conclusions UCD principles and the targeted application of crowdsourcing methods provided the foundation for the development, construction, and evaluation of a continuously accessible, archived, user-responsive coping resource designed by and for parents of YC-T1D. The process described here could be a template for the development of similar resources for other special populations that are enduring specific medical or psychosocial distress. The ongoing RCT is the final step in the UCD process and is designed to validate its merits.