Diabetes distress and HbA1c in racially/ethnically and socioeconomically diverse youth with type 1 diabetes.

BACKGROUND: Diabetes distress, the emotional burden of caring for the chronic demands of diabetes, has not been well described in children and preadolescents with type 1 diabetes (T1D). This gap is particularly evident among youth of lower socioeconomic status (SES) and/or racial/ethnic minorities. Since these groups are more likely to have disparities in health outcomes and healthcare related to their diabetes, factors that could potentially improve glycemic and other diabetes-related outcomes should be studied closely. OBJECTIVE: We hypothesized that (a) diabetes distress levels would be elevated in children with markers of lower SES and those of racial/ethnic minorities, and (b) higher HbA1c would be predicted by higher diabetes distress levels, when controlling for race/ethnicity, SES, and clinical covariates. METHODS: One hundred and eighty-seven youth age 9 to 13 with T1D completed age-appropriate Problem Areas in Diabetes (PAID) questionnaires using a web-based portal during routine diabetes care visits. RESULTS: PAID scores were significantly elevated in youth who had surrogate markers of lower SES and who were from racial/ethnic minority backgrounds. In multivariate models including race/ethnicity or the SES variables and controlling for clinical covariates, the factor most predictive of higher HbA1c was elevated PAID score. CONCLUSIONS: Diabetes distress is elevated in a younger population of children with T1D who are from racial/ethnic minority backgrounds or have markers of lower SES. Interventions that target distress and/or expand the safety net in these populations could potentially improve glycemic outcomes.

Barriers and Facilitators to Involvement in Children's Diabetes Management Among Minority Parents.

OBJECTIVE: This study aimed to describe parents' perceptions of the factors that facilitate or are barriers to their involvement in children's type 1 diabetes (T1D) management among African American and Latino parents. METHODS: African American and Latino parents (N = 28) of 5- to 9-year-old children with T1D completed audio-recorded, semi-structured interviews that were transcribed and analyzed using thematic analysis. Themes were identified that aligned with the theoretically-derived Capability-Opportunity-Motivation-Behavior (COM-B) framework. RESULTS: Parents described Capability-based facilitators of parent involvement, including positive stress management, religious/spiritual coping, organizational/planning skills, and diabetes knowledge. Capability-based barriers included child and parent distress. Interpersonal relationships, degree of flexibility in work environments, and access to diabetes technologies were both Opportunity-based facilitators and barriers; and Opportunity-based barriers consisted of food insecurity/low financial resources. Parents' desire for their child to have a "normal" life was described as both a Motivation-based facilitator and barrier. CONCLUSIONS: African American and Latino families described helpful and unhelpful factors that spanned all aspects of the COM-B model. Reinforcing or targeting families' unique psychological, interpersonal, and environmental strengths and challenges in multilevel interventions has potential to maximize parental involvement in children's diabetes management.

Bedside Usability Surveys: Adding Authentic User Detail to the Assessment.

Errors in healthcare are a leading cause of death in the United States. Equipment usability and user interfaces remain an area not fully elucidated. Infusion pumps play a vital role in care delivery, often essential for critical therapies. While pump function is comparatively simple, their programming, configuration, and form provide opportunity for error. Our purpose was to assess qualities nurses identified as important to pump operation by electronic survey. A self-developed usability survey was distributed to a random sample of 500 nurses, stratified by unit type and employed at the large academic quaternary care hospital. The overall response rate was 48% (n = 240). Descriptive and inferential statistics describe the responses and represent more than 5500 weekly infusions. Nurses described confident use of the system with some differences by unit type. Ninety percent of respondents indicated they have omitted use of the dose error reduction system, which should raise safety concerns. Users reported issues with the user interface and error prevention systems. Qualitative items elicited suggestions for improving aspects of the pump. Employing a usability survey in a clinical area proved to be a simple, inexpensive way to gather more information on the use and potential improvements of infusion pumps.

Pilot and feasibility study of a parenting intervention delivered by parent peers.

Preventive parenting interventions delivered by parent peer specialists may be a viable alternative to professional-led interventions and offer an advantage of increasing access in medically underserved areas. The objective of this pilot study was to assess the feasibility and preliminary outcomes of a 10-session, peer specialist-delivered preventive parenting intervention (Smart and Secure Children) for child disruptive behavior. The intervention was evaluated among a small sample of parents (N = 15) of preschoolers (2-5 years) residing in medically underserved communities. Pediatricians referred families to the intervention, which was delivered in primary care practices within medically underserved communities. To determine feasibility, we calculated percentages of pediatricians who referred parents to the intervention, parent peer specialists who completed 40-h interventionist and leadership training, and the average number of sessions attended by parents. Enrolled parents completed questionnaires assessing child disruptive behavior, parenting stress and parenting competence at pre-and post-intervention. Descriptive statistics demonstrated the majority of pediatricians within the clinics referred families, and all parent peer specialists completed training to deliver the intervention. On average, 60% of sessions were attended by parents. Pairwise t-tests showed pre-to-post-intervention improvements in number of child disruptive behaviors perceived as a problem by parents, parenting stress and parenting competence. No significant change was found in parent-reported frequency of child disruptive behaviors. Results suggests adequate feasibility of the Smart and Secure Children Intervention, and that it holds promise for improving parenting stress and competence, and decreasing the number of child behaviors that are perceived as a problem by parents. Future directions for research are discussed.

Relationships of Shared Decision Making with Parental Perceptions of Child Mental Health Functioning and Care.

Experts encourage parents and practitioners to engage in shared decision making (SDM) to provide high quality child mental health care. However, little is known regarding SDM among families of children with common mental health conditions. The objectives of this study were to examine associations between parental report of SDM and parental perceptions of (a) receiving child mental health care and (b) child mental health functioning. We analyzed cross-sectional data on children with a common mental health condition (attention-deficit hyperactivity disorder, oppositional-defiant or conduct disorder, anxiety, or depression) from the 2009/2010 National Survey of Children with Special Healthcare Needs (N = 9,434). The primary independent variable was parent-reported SDM, and the dependent variables were parental perception of (a) their child receiving all needed mental health care (b) their children's impairment in school attendance and extracurricular activity participation, and (c) severity of their children's mental health condition. Multivariate logistic and multinomial regression analyses were conducted. Greater parent-reported SDM was associated with parental perceptions of receiving all needed child mental health care and children not having school or extracurricular impairment. Greater SDM was also associated with perceptions of children having a mild mental health condition compared to children having a moderate or severe condition. Findings provide a basis for future longitudinal and intervention studies to examine the benefit of SDM for improving parental perceptions of the quality of child mental health care and mental health functioning among children with common mental health conditions.

Systematic Review of Engagement in Culturally Adapted Parent Training for Disruptive Behavior.

This article reviews the literature reporting engagement (enrollment, attendance, and attrition) in culturally adapted parent training for disruptive behavior among racial/ethnic minority parents of children ages 2-7 years. The review describes the reported rates of engagement in adapted interventions and how engagement is analyzed in studies, methods to develop adaptations, and adaptations that have been implemented. Seven studies were identified. Parental engagement varied across and within studies. Only one study examined whether adaptations improved engagement compared to non-adapted intervention. Frequent methods to develop adaptations were building partnerships or conducting interviews/focus groups with minority parents or community members. Adaptations included addressing cultural beliefs (perceptions of parenting skills), values (interdependence), or experiences (immigration) that affect parenting or receptivity to interventions; ensuring racial/ethnic diversity of interventionists; and addressing cultural relevancy and literacy level of materials. Future research should examine engagement in adapted interventions compared to non-adapted interventions and examine factors (e.g., immigration status) that may moderate impact on engagement.

Cognition, behavior, and respiratory function in amyotrophic lateral sclerosis.

Objective. To examine the relationship between respiratory functioning and neuropsychological performance, mood, and frontal-lobe-mediated behaviors in ALS patients. Methods. Forty-four patients with probable or definite ALS (El Escorial criteria) completed comprehensive pulmonary and neuropsychological assessments as part of their baseline neurological evaluation. Based on their full vital respiratory capacity, 24 and 20 patients were classified as having impaired or intact respiration, respectively. Results. Comparable demographic characteristics, neuropsychological performance, and self-reported mood symptoms were found between ALS patients with intact versus impaired respiration. However, more respiratory-impaired patients were reported by their caregivers as having clinically significant impairments in frontal-lobe-mediated behaviors. Nevertheless, declines in behavior were evidenced from pre- to post-ALS symptom onset for both respiratory groups, and exploratory analyses revealed greater executive functioning deficits in patients with bulbar versus limb onset as well as respiratory-impaired patients not receiving pulmonary interventions versus those utilizing such interventions at the time of testing. Conclusions. Results suggest that the respiratory insufficiency of ALS patients may potentially produce irreversible deficits in executive functioning; yet once treated, impairments in more basic cognitive abilities may be less evident.