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.
Research on the transition to adult care for young adults with type 1 diabetes (T1D) emphasizes transition readiness, with less emphasis on transition outcomes. The relatively few studies that focus on outcomes use a wide variety of measures with little reliance on stakeholder engagement for measure selection This study engaged multiple stakeholders (i.e., young adults with T1D, parents, pediatric and adult health care providers, and experts) in qualitative interviews to identify the content domain for developing a multidimensional measure of health care transition (HCT) outcomes The following constructs were identified for a planned measure of HCT outcomes: biomedical markers of T1D control; T1D knowledge/skills; navigation of a new health care system; integration of T1D into emerging adult roles; balance of parental involvement with autonomy; and “ownership” of T1D self-management The results can guide creation of an initial item pool for a multidimensional profile of HCT outcomes.
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.
Children and their family members may experience potentially traumatic events during medical treatment that can result in pediatric medical traumatic stress reactions. Play is a normative part of childhood that may facilitate engagement in medical care and may be incorporated in trauma-informed care. This qualitative study used semistructured interviews to examine the role of play and its potential use in trauma-informed care. The perspectives of 30 multidisciplinary pediatric healthcare providers representing 5 divisions (Cardiology, Endocrinology, Oncology, Orthopedics, Pulmonology) in 2 children's hospitals were gathered. Constant comparison and directed content analysis were used to analyze the data. Themes and subthemes were derived in 3 areas: (a) aspects of pediatric medical care that are potentially traumatic (specific events; and physical, emotional, and family-level consequences), (b) uses of play in pediatric healthcare settings (general [relieve boredom] and trauma-specific [prevention/alleviation]), and (c) potential barriers to the use of play in trauma-informed care (infection control; lack of provider training). The results document aspects of pediatric medical experiences that providers recognize as potentially traumatic, highlighting the importance of trauma-informed care. They also identify ways to use play to engage with children and families in a trauma-informed way. Additional training and development regarding play may increase the viability of using play in trauma-informed pediatric healthcare. (PsycINFO Database Record (c) 2019 APA, all rights reserved).
Parenting young children with type 1 diabetes (YC-T1D) entails pervasive challenges; parental coping may influence child and parent outcomes. This study used a qualitative descriptive design to describe these challenges comprehensively to inform the user-centered design of an Internet coping resource for parents. A “Parent Crowd” of 153 parents of children with T1D onset at ≤ 5 years old submitted textual responses online to open-ended questions about parenting YC-T1D. Systematic coding organized responses into domains, themes, and examples. A supplemental focus group of racial/ethnic minority parents enhanced the sample’s diversity and validated findings from the Parent Crowd. Similar domains and themes emerged from responses of crowdsourcing and focus group participants. In each domain, parenting YC-T1D was challenging, but there was also substantial evidence of positive coping strategies and adaptability. The study yielded rich data to inform user-centered design of an Internet resource for parents of YC-T1D.