Multiple sources of burden for youth with type 1 diabetes (T1D) impact key outcomes including quality of life, self‐management, and glycemic control. Professional diabetes organizations recommend ...diabetes care providers screen for psychosocial and behavioral challenges and implement strategies to support youth with T1D. The purpose of this article is to review the literature and recommend practical strategies medical providers can use for screening and behavioral support for youth with diabetes and their families. As part of their routine medical care, diabetes care providers are well‐positioned to identify and intervene to address emotional distress related to the burdens of living with diabetes. In collaboration with multidisciplinary team members, including psychologists and mental health professionals, medical providers may be able to successfully implement brief behavioral strategies for screening and providing emotional support.
Background
Cost is a major consideration in the uptake and continued use of diabetes technology. With increasing use of automated insulin delivery systems, it is important to understand the specific ...cost‐related barriers to technology adoption. In this qualitative analysis, we were interested in understanding and examining the decision‐making process around cost and diabetes technology use.
Materials and Methods
Four raters coded transcripts of four stakeholder groups using inductive coding for each stakeholder group to establish relevant themes/nodes. We applied the Social Ecological Model in the interpretation of five thematic levels of cost.
Results
We identified five thematic levels of cost: policy, organizational, insurance, interpersonal and individual. Equitable diabetes technology access was an important policy‐level theme. The insurance‐level theme had multiple subthemes which predominantly carried a negative valence. Participants also emphasized the psychosocial burden of cost specifically identifying diabetes costs to their families, the guilt of diabetes related costs, and frustration in the time and involvement required to ensure insurance coverage.
Conclusion
We found broad consensus in how cost is experienced by stakeholder groups. Cost considerations for diabetes technology uptake extended beyond finances to include time, cost to society, morality and interpersonal relationships. Cost also reflected an important moral principle tied to the shared desire for equitable access to diabetes technology. Knowledge of these considerations can help clinicians and researchers promote equitable device uptake while anticipating barriers for all persons living with type 1 diabetes and their families.
Objective
Prior studies suggest diabetes camps improve psychosocial well‐being in youth with type 1 diabetes but these studies suffer from variable levels of rigor. The present study assessed ...associations between camp participation and diabetes distress, perceived independence in diabetes self‐care, and diabetes strengths in a large sample of children, adolescents, and their parents across 44 camps in the United States. Analyses compared viewpoints of study participants, identified moderators of change, and assessed perceived benefits of camp participation.
Methods
There were 2488 youth and 2563 parents consented for participation in the online survey. Participants reported diabetes distress and perceived independence in youth care, their new experiences and best parts of camp, and changes in behavior following camp. T‐tests, regressions, Cohen's d, and relative frequencies were used as appropriate to assess baseline differences between reporters, pre‐post outcome differences, and moderators of change.
Results
Parents as compared to youth reported higher pre‐camp distress and lower perception of youth independence in self‐care. Youth experienced a statistically significant decrease in distress and increase in independence in self‐care. Diabetes strengths did not change. Higher A1c prior to camp was associated with higher levels of distress across camp participation. Campers and their parents endorsed a high frequency of positive firsts, bests, and benefits of camp.
Conclusions
Data from a large sample youth with type 1 diabetes across multiple camps showed broad‐based psychosocial benefits of camp participation.
Weissberg‐Benchell J, Antisdel‐Lomaglio J. Diabetes‐specific emotional distress among adolescents: feasibility, reliability, and validity of the problem areas in diabetes‐teen version.
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.
Diabetes is unique among chronic diseases because clinical outcomes are intimately tied to how the person living with diabetes reacts to and implements treatment recommendations. It is further ...characterised by widespread social stigma, judgement and paternalism. This physical, social and psychological burden collectively influences self‐management behaviours. It is widely recognised that the individual's perspective about the impact of trying to manage the disease and the burden that self‐management confers must be addressed to achieve optimal health outcomes. Standardised, rigorous assessment of mental and behavioural health status, in interaction with physical health outcomes is crucial to aid understanding of person‐reported outcomes (PROs). Whilst tempting to conceptualise PROs as an issue of perceived quality of life (QoL), in fact health‐related QoL is multi‐dimensional and covers indicators of physical or functional health status, psychological and social well‐being. This complexity is illuminated by the large number of person reported outcome measures (PROMs) that have been developed across multiple psychosocial domains. Often measures are used inappropriately or because they have been used in the scientific literature rather than based on methodological or outcome assessment rigour. Given the broad nature of psychosocial functioning/mental health, it is important to broadly define PROs that are evaluated in the context of therapeutic interventions, real‐life and observational studies. This report summarises the central themes and lessons derived in the assessment and use of PROMs amongst adults with diabetes. Effective assessment of PROMs routinely in clinical research is crucial to understanding the true impact of any intervention. Selecting appropriate measures, relevant to the specific factors of PROs important in the research study will provide valuable data alongside physical health data.
While individual and family risk factors that contribute to health disparities in children with type 1 diabetes have been identified, studies on the effects of neighborhood risk factors on glycemic ...control are limited, particularly in minority samples. This cross‐sectional study tested associations between family conflict, neighborhood adversity and glycemic outcomes (HbA1c) in a sample of urban, young Black adolescents with type 1 diabetes(mean age = 13.4 ± 1.7), as well as whether neighborhood adversity moderated the relationship between family conflict and HbA1c. Participants (N = 128) were recruited from five pediatric diabetes clinics in two major metropolitan US cities. Diabetes‐related family conflict was measured via self‐report questionnaire (Diabetes Family Conflict Scale; DFCS). Neighborhood adversity was calculated at the census block group level based on US census data. Indictors of adversity were used to calculate a neighborhood adversity index (NAI) for each participant. Median family income was $25,000, suggesting a low SES sample. In multiple regression analyses, DFCS and NAI both had significant, independent effects on glycemic control (β = 0.174, P = 0.034 and β = 0.226 P = 0.013, respectively) after controlling for child age, family socioeconomic status and insulin management regimen. Tests of effects of the NAI and DFCS interaction on HbA1c found no significant moderating effects of neighborhood adversity. Even within contexts of significant socioeconomic disadvantage, variability in degree of neighborhood adversity predicts diabetes‐related health outcomes in young Black adolescents with type 1 diabetes. Providers should assess social determinants of health such as neighborhood resources that may impact adolescents' ability to maintain optimal glycemic control.
Background
Adaptive diabetes‐specific attitudes and behaviors, known as diabetes strengths, relate to positive self‐management and quality of life outcomes in type 1 diabetes (T1D), but have not been ...studied in preadolescence. To facilitate strengths‐based care and research on this topic, we developed and evaluated the psychometric properties of a measure of diabetes strengths for children age 9 to 13.
Methods
Participants were 187 children receiving care for T1D at a tertiary care children's hospital. They completed the 12‐item self‐report Diabetes Strengths and Resilience scale for children (DSTAR‐Child), which we adapted from a measure validated for adolescents. Youth completed the DSTAR‐Child twice, and measures of relevant constructs at baseline: general and diabetes‐related quality of life, depressive symptoms, and diabetes distress. Parents rated children's engagement in self‐management behaviors and general resilience. We extracted HbA1c from the medical record.
Results
The DSTAR‐Child total score demonstrated reliability, including internal consistency and stability across two time points. The total score was significantly associated in expected directions with psychosocial measures and glycemic control but not self‐management behaviors. In confirmatory factor analyses, the best‐fitting structure contained two latent factors tapping intrapersonal and interpersonal strengths. Resulting subscale scores also appeared reliable and valid.
Conclusions
This brief, practical measure of diabetes strengths demonstrated sound psychometric properties. Diabetes strengths appeared unrelated to self‐management behaviors, perhaps because of the primary role of adult caregivers in T1D management for preadolescents. As a research and clinical tool, the DSTAR‐Child can facilitate greater understanding of diabetes strengths and inform strengths‐based strategies to foster resilient T1D outcomes.
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