Illness identity and adjusting to type I diabetes: A four-wave longitudinal study.

OBJECTIVES: Prior research has linked illness identity-or the extent to which the illness is integrated into one's identity-to diabetes-specific functioning. Four illness identity dimensions have been identified: rejection, acceptance, engulfment, and enrichment. As longitudinal research on this topic is scarce, this study examined developmental trajectories of illness identity and prospective associations between illness identity and diabetes-specific functioning. METHOD: Adolescents and emerging adults with Type I diabetes, aged 14 to 25 (Mage = 19; 54% girls), participated in a four-wave longitudinal study spanning 3 years (N = 559 at Time 1). Participants filled out questionnaires on illness identity, treatment adherence, and diabetes-specific distress. Hemoglobin A1c (HbA1c) values were obtained from participants' medical records. To chart the development of illness identity over time, we performed latent growth curve modeling. Cross-lagged analysis was used to examine prospective associations between illness identity and diabetes-specific functioning. RESULTS: We observed small linear increases in acceptance (Mslope = .05, p < .01) and engulfment (Mslope = .03, p < .05) and a small linear decrease in rejection (Mslope = -.08, p < .001) across waves (with scale scores ranging between 1 and 5). Rejection negatively predicted and enrichment positively predicted treatment adherence 1 year later, which, in turn, positively predicted enrichment and negatively predicted engulfment over time. Furthermore, rejection and engulfment positively predicted diabetes-specific distress 1 year later. Finally, diabetes-specific distress and HbA1c positively predicted engulfment 1 year later. Standardized cross-lagged coefficients ranged between |.05| and |.11|. CONCLUSIONS: We identified small but interesting changes in three out of four illness identity dimensions. Prospective associations between illness identity and diabetes-specific functioning were bidirectional in nature. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Health-related quality of life in youth with type 1 diabetes: Associations with multiple comorbidities and mental health conditions.

AIM: This cross-sectional study examined the associations of comorbid conditions on health-related quality of life (HRQOL) in 601 youth with type 1 diabetes. We evaluated associations between number of comorbid conditions (0, 1, ≥2) and particular comorbid conditions and youth HRQOL by self-report and parent proxy-report. RESEARCH DESIGN AND METHODS: Youth with type 1 diabetes, aged 5-18 years, and their parents completed the PedsQL 4.0 Generic Core Scales self-report and parent proxy-report, respectively; they also reported youths' comorbid medical and mental health conditions. Separate linear regression models tested the relationship between number of comorbid conditions and specific comorbid conditions with youth-reported and parent proxy-reported HRQOL. RESULTS: Youth with ≥2 comorbid conditions had significantly lower HRQOL by both self- and parent proxy-reports compared with youth with 0 or 1 comorbid condition (youth self-report: 0: 85 ± 12, 1: 85 ± 13, 2+: 78 ± 16, p = <0.0001; parent proxy-report: 0: 83 ± 12, 1: 81 ± 13, 2+: 74 ± 15, p = <0.0001). Amongst the comorbid conditions, only a mental health comorbidity was associated with lower HRQOL. For youth and parent proxy-reports, both the number of comorbidities (≥2) and the presence of a mental health comorbidity were significantly associated with lower HRQOL. CONCLUSIONS: Health-related quality of life seems to be preserved in youth with type 1 diabetes unless confronted by multiple comorbidities as reported by youth and their parents. Our findings highlight the importance of tracking the presence of multiple comorbid conditions, possibly by reviewing problem and medication lists in the medical record, as well as screening for and addressing mental health conditions in routine diabetes care.

Advances, Challenges, and Cost Associated with Continuous Glucose Monitor Use in Adolescents and Young Adults with Type 1 Diabetes.

PURPOSE OF REVIEW: Continuous glucose monitors (CGM) are transforming diabetes management, yet adolescents and young adults (AYA) with type 1 diabetes (T1D) do not experience the same benefits seen with CGM use in adults. The purpose of this review is to explore advances, challenges, and the financial impact of CGM use in AYA with T1D. RECENT FINDINGS: CGM studies in young adults highlight challenges and suggest unique barriers to CGM use in this population. Recent studies also demonstrate differences in CGM use related to race and ethnicity, raising questions about potential bias and emphasizing the importance of patient-provider communication. Cost of these devices remains a significant barrier, especially in countries without nationalized reimbursement of CGM. More research is needed to understand and address the differences in CGM utilization and to increase the accessibility of CGM therapy given the significant potential benefits of CGM in this high-risk group.

Executive dysfunction is associated with poorer health-related quality of life in adolescents with type 1 diabetes: differences by sex.

PURPOSE: Type 1 diabetes (T1D) is one of the most complex and demanding chronic diseases in adolescents. Given the detrimental impact of problems with executive function (EF; the ability to initiate, plan, and monitor behavior) on health outcomes in adolescents with T1D, most studies have examined common diabetes-specific outcomes related to self-management and glycemic control. This study aims to investigate the impact of executive dysfunction on health-related quality of life (HRQoL; an individual's perceived impact of illness and treatment on daily functioning) in adolescents with T1D from a multi-informant perspective. METHODS: In this cross-sectional study, 169 adolescents (mean ± SD age 15.9 ± 1.3 years) and their parents reported on adolescent EF and HRQoL (assessed by the BRIEF and PedsQL, respectively). Parent-youth interview and chart review provided demographic and clinical characteristics. Statistical analyses encompassed bivariate correlations, t-tests, chi-squared tests, and multivariable analyses. RESULTS: Adolescent self-reports and parent proxy-reports identified 13% and 32% of adolescents, respectively, as having executive dysfunction. Poorer adolescent EF was associated with poorer adolescent HRQoL by both adolescent self-report and parent proxy-report, respectively. In significant multivariable models, adjusted for adolescent age, sex, diabetes duration, and glycemic control, 21% and 24% of the variance in adolescent self-reported and parent proxy-reported HRQoL were explained by adolescent self-reported and parent proxy-reported executive dysfunction. A significant interaction of sex with adolescent self-report of executive dysfunction indicated that executive dysfunction had a greater negative impact on HRQoL in females than males (p < .01). CONCLUSIONS: Findings suggest that the impact of EF problems in adolescents with T1D goes beyond diabetes-specific outcomes and focuses attention on the need to evaluate and preserve HRQoL.

Ready or not? Greater readiness for independent self-care predicts better self-management but not HbA1c in teens with type 1 diabetes.

OBJECTIVE: Prior to the transfer from paediatric to adult health care transition, teens with type 1 diabetes seek increasing independence in diabetes self-care while parent involvement in care decreases. Yet, few teens attain glycaemic targets. This study aimed to assess changes in perceived readiness for independent self-care in teens with type 1 diabetes over 18 months, from both teens' and parents' perspectives, and to evaluate its predictive value for diabetes self-management and haemoglobin A1c (HbA1c ). RESEARCH DESIGN AND METHODS: At baseline, 6, 12 and 18 months, 178 teens with type 1 diabetes (mean ± SD age 14.9±1.3 years; HbA1c 8.5 ± 1.0% (69 ± 11 mmol/mol); 48% female) and their parents completed the Readiness for Independent Self-Care Questionnaire (RISQ-T and RISQ-P, respectively) and a measure of self-management. Chart review provided HbA1c values. Statistical analyses encompassed bivariate correlations, paired t-tests and multivariable longitudinal mixed models. RESULTS: Teens perceived greater self-care readiness than their parents at baseline and over 18 months of follow-up. Both teen and parent perceptions of teen readiness for independent self-care increased over time, and significantly predicted higher teen self- and parent proxy-reported teen diabetes self-management, respectively, but not improved HbA1c . CONCLUSIONS: The current findings may point to a disconnect between how increased readiness for independent self-care may translate into better perceived diabetes self-management, but not into better HbA1c . In an effort to optimize HbA1c in teens with type 1 diabetes, future research is needed to design interventions that align perceived readiness for independent self-care with self-care behaviours that improve HbA1c .

Executive function mediates the link between externalizing behavior and HbA1c in children and adolescents with type 1 diabetes: A cross-national investigation.

OBJECTIVE: Externalizing behavior (i.e., conduct problems, hyperactivity) and executive function (EF) problems in children and adolescents with type 1 diabetes (T1D) have been associated with worse diabetes-related and psychosocial outcomes but have not been examined in relationship to each other. We aimed to examine whether externalizing behavior is associated with HbA1c and whether this relationship is mediated by EF problems, specifically metacognition (i.e., ability to initiate, plan, organize and monitor behavior) and behavioral regulation (i.e., impulse control, regulation of emotion and behavior). RESEARCH DESIGN AND METHODS: Cohorts of Belgian and Dutch parents of children and adolescents (6-18 years) with T1D filled out questionnaires on externalizing behavior (Strengths and Difficulties Questionnaire; SDQ) and EF (Behavior Rating Inventory of Executive Function; BRIEF) composite scales. Treating physicians collected HbA1c values. Mediation analyses were performed separately for the BRIEF composite Metacognition and Behavior Regulation scales, correcting for age, sex and diabetes duration. RESULTS: The 335 parents of children and adolescents with T1D (mean age 12.3 ± 2.8 SD; mean HbA1c 7.6% ± 1.1 SD [60 mmol/mol ± 12.0 SD]; mean diabetes duration 5.3 ± 3.6 SD; 49.6% female) participated. Analyses showed that the association between externalizing behavior and HbA1c is mediated by metacognition (ab path Point estimate = 0.05 BCa CI 95% 0.02-0.08), and not behavioral regulation. CONCLUSIONS: Results uncovered the influence externalizing behavior may have on EF problems in the metacognition domain, which in turn seem to influence HbA1c. Clinicians should be mindful of these EF problems when working with children and adolescents displaying externalizing behavior, and not only target behavioral but also cognitive processes.

Sleep and depressive symptoms in adolescents with type 1 diabetes not meeting glycemic targets.

AIMS: Adolescents with type 1 diabetes (T1D) are at risk for problems with self-management and suboptimal glycemic control, and depressive symptoms and sleep disturbances predict poorer diabetes outcomes. Despite evidence for associations between adolescent depressive symptoms and sleep in the general population, few studies have investigated this link in the vulnerable group of adolescents with T1D not meeting glycemic targets. The current study sought to assess both depressive symptoms and sleep in relation to diabetes indicators in adolescents with T1D. METHODS: 120 adolescents (ages 13-17 years) with above target glycemic control completed measures of depressive symptoms, sleep duration and quality, and self-management; parents also reported on adolescents' diabetes management. Clinical data (i.e., HbA1c) were extracted from medical records. RESULTS: In our sample, 40% of adolescents reported at least mild depressive symptoms, and 26% reported clinically significant sleep disturbances. Adolescents with sleep disturbances were more likely to report at least mild symptoms of depression, and both depressive symptoms and sleep quality were associated with poorer diabetes management. No significant differences emerged regarding HbA1c or frequency of blood glucose monitoring. CONCLUSIONS: The current findings highlight the importance of clinical assessment of both depressive symptoms and sleep in the vulnerable group of adolescents with T1D.

Health Care Transition in Type 1 Diabetes: Perspectives of Diabetes Care and Education Specialists Caring for Young Adults.

PURPOSE: The purpose of the study was to describe experiences reported by diabetes care and education specialists caring for young adults with type 1 diabetes and to assess perceived deficiencies in clinical resources and barriers to care delivery. METHODS: A 60-item electronic survey was fielded through email to members of the Association of Diabetes Care and Education Specialists (ADCES). Respondents completed a survey consisting of: (1) clinical practice characteristics and respondents' demographics; (2) health care transition components (eg, referrals) and their perceived importance; (3) framework of current clinical diabetes care delivery and perceived need for additional support; and (4) perceived barriers regarding clinical care delivery. Statistical analyses included descriptive statistics, chi-square tests, and logistic regression. RESULTS: Respondents (N = 531, 96% female, median years in practice = 13; interquartile range = 7-20) represented 49 states plus the District of Columbia. Although 88% of respondents reported reviewing pediatric records as important/very important, only 22% often/always reviewed them. Although 58% of respondents noted easy access to mental health care providers for young adults, 50% stated a need for additional resources. Furthermore, diabetes care and education specialists without easy access to mental health professionals were significantly more likely to report barriers to diabetes management for young adults with depression, substance abuse, eating disorders, and developmental disabilities. CONCLUSION: Study findings highlight modifiable factors that may improve diabetes care coordination for transitioning young adults. Uniform approaches and increased access to trained mental health professionals may help support diabetes care and education specialists in their care of young adults with type 1 diabetes.

Using Person-Reported Outcomes (PROs) to Motivate Young People with Diabetes.

PURPOSE OF REVIEW: This manuscript describes how person-reported outcomes (PROs) can be utilized in care for young people with diabetes in the context of motivation. RECENT FINDINGS: The use of person-reported outcome measures (PROMS) in clinical care is feasible and acceptable, and helps focus the clinical encounter on life domains important to the person with diabetes. Results with regard to impact on self-management and glycemic outcomes are limited. Motivation is an important factor for self-management. Based on self-determination theory, autonomy-supportive, person-centered, and collaborative communication by diabetes care providers is associated with better outcomes. PROMs can facilitate this conversation. Understanding of youth motivation for maintaining or improving self-management behaviors requires a person-centered approach. PROMs can be used to facilitate an autonomy-supportive and person-centered conversation in clinical care. Training diabetes care providers in autonomy-supportive, person-centered conversation skills to discuss PROs might help to tap into youth's motivation, but further research is needed.

Communication matters: The role of autonomy-supportive communication by health care providers and parents in adolescents with type 1 diabetes.

AIMS: Although research exists on parental communication in adolescents with type 1 diabetes (T1D), the role of communication by health care providers remains understudied. Grounded in Self-Determination Theory, this study examined the role of autonomy-supportive communication (i.e., providing meaningful rationale and offering choices with regard to treatment recommendations) by providers and parents, and how they interact in the prediction of diabetes outcomes. METHODS: In this cross-sectional study, 135 adolescents (mean age 14.3 ± 2.1SD years), 171 mothers, and 121 fathers reported on autonomy-supportive communication from health care providers and parents, and on adolescent treatment adherence. HbA1c values were retrieved from the medical record. RESULTS: In adolescent reports, perceived autonomy-supportive communication from providers but not from parents was positively related to treatment adherence. A significant interaction between autonomy-supportive communication from providers and parents pointed to the highest level of treatment adherence when adolescents perceived both providers and parents as autonomy-supportive. In contrast, parental reports revealed that parental autonomy-supportive communication was positively related to treatment adherence, whereas autonomy-supportive communication by providers was not. CONCLUSIONS: Autonomy-supportive communication by providers and parents is associated with better treatment adherence in adolescents with T1D. Interventions to improve autonomy-supportive communication by parents and providers may improve treatment adherence of adolescents (e.g., communication training).

Assessing readiness for independent self-care in adolescents with type 1 diabetes: Introducing the RISQ.

AIM: To design and evaluate psychometrics of adolescent self-report and parent proxy-report questionnaires assessing readiness for independent self-care in adolescents with type 1 diabetes (RISQ-T and RISQ-P). METHODS: 178 adolescents with type 1 diabetes (ages 13-17 years) and their parents completed the 20-item RISQ-T and 15-item RISQ-P, along with diabetes-specific measures of parent involvement, self-efficacy, burden, and treatment adherence. Evaluation of psychometric properties included calculation of internal consistency, adolescent and parent agreement, test-retest reliability, concurrent and predictive validity. RESULTS: The RISQ-T (α = 0.78) and RISQ-P (α = 0.77) demonstrated sound internal consistency. Higher RISQ-T and RISQ-P scores (indicating more adolescent readiness for independent self-care) showed significant associations with less parent involvement in diabetes care (adolescent r = -0.34; parent r = -0.47; p < .0001), greater adolescent diabetes self-efficacy (adolescent r = 0.32; parent r = 0.54; p < .0001), less parent-endorsed diabetes-related burden (parent r = -0.30; p < .0001), and greater treatment adherence (adolescent r = 0.26, p = .0004; parent r = 0.31, p < .0001). Adolescent and parent scores were significantly correlated (r = 0.35; p < .0001); test-retest reliability was reasonable (ICC RISQ-T r = 0.66; RISQ-P r = 0.71). Higher baseline RISQ-P scores significantly predicted reduced family involvement after six months (ß = -0.14, p = .02). CONCLUSIONS: RISQ-T and RISQ-P demonstrate sound psychometric properties. Surveys may help inform diabetes teams of the level of support needed to facilitate shift to independent self-management.

Parental stress, anxiety and trait mindfulness: associations with parent-child mealtime interactions in children with type 1 diabetes.

Introduction This study examined how maternal and paternal stress, anxiety, and trait mindfulness, and child glycemic control are related to real-life parent-child interactions in families confronted with type 1 diabetes (T1D). Methods Parents reported on trait mindfulness, illness-related parenting stress, general stress, and state anxiety. Parent-child mealtime interactions were videotaped and scored in 33 families (31 mothers and 20 fathers) of children with T1D (5-12y., mean HbA1c = 7.22%). Results Parental stress and anxiety were related to more maladaptive and less adaptive parent-child interactions. For mothers, mindfulness was related to less observed discomfort of the child during injection. For fathers, more emotional involvement was related to better child glycemic control. Discussion Results indicate that parental stress and anxiety may be risk factors for maladaptive parent-child interactions.

Families with pediatric type 1 diabetes: A comparison with the general population on child well-being, parental distress, and parenting behavior.

AIMS: The aim of this study was to compare families with a child (2-12 years) with type 1 diabetes (T1D) to families which are not confronted with chronic illness, with regard to children's well-being, parental distress, and parenting behavior. In addition, differences were explored between families whose child has optimal vs suboptimal glycemic control. METHODS: Mothers, fathers, and children of 105 families with pediatric T1D completed questionnaires assessing child well-being, parental distress, and parenting. The control group consisted of 414 families without chronic illness. RESULTS: With regard to child well-being, children with T1D had more adjustment difficulties (as reported by mothers) and lower quality of life (QoL) (as reported by mothers and fathers), whereas children themselves (8-12 years) reported higher QoL compared to controls. In terms of parental distress, mothers, but not fathers, of children with T1D reported more stress, anxiety symptoms, and depressive symptoms than controls. With regard to parenting behavior, parent reports revealed less protectiveness in fathers and less autonomy support and responsiveness in both parents as compared to controls. No differences were found in parent-reported psychological control between parents of children with and without T1D, but children with T1D perceived lowered parental psychological control. Lastly, secondary analyses indicated that especially families with suboptimal child glycemic control showed more maternal distress and worse child well-being (according to parents). CONCLUSIONS: Families confronted with pediatric T1D differ from families without chronic illness: childhood T1D impacts parental perceptions of child well-being and differentially affects mothers' and fathers' distress levels and behaviors.

"Let's talk about it" The role of parental communication in adolescents' motivation to adhere to treatment recommendations for type 1 diabetes.

OBJECTIVE: Grounded in Self-Determination Theory, this study examines the role of parental expectations and communication style (ie, in an autonomy-supportive vs controlling way) in the prediction of adolescent motivation (ie, internalization or defiance) to adhere to self-management for type 1 diabetes. METHODS: Structural Equation Modeling was used in a cross-sectional, multi-informant study of 129 adolescents (Mage = 14.43; 54.4% girls), 110 mothers, and 98 fathers. Adolescents reported on self-motivation, treatment adherence, and parental expectations and communication styles; parents reported on their own expectations, communication style, and perceptions of adolescent treatment adherence. Medical record review provided HbA1c values. RESULTS: Across adolescent and parent reports, parental communication of diabetes-specific expectations and an autonomy-supportive style of communicating expectations related positively to adolescents' internalization of diabetes self-management and negatively to defiance against diabetes self-management. In contrast, a controlling parental communication style showed the opposite patterns of associations. Higher adolescent defiance was related to poorer treatment adherence and worse glycemic control. CONCLUSIONS: Parental communication styles related to adolescent motivation, which in turn, related to adolescent treatment adherence and glycemic control. Future longitudinal research can address the long-term impact of both maternal and paternal communication styles on adolescent motivation to adhere to treatment and their subsequent glycemic control.

Disturbed Eating Behaviors in Adolescents and Emerging Adults With Type 1 Diabetes: A One-Year Prospective Study.

OBJECTIVE: Disturbed eating behavior (DEB) is prevalent in youth with type 1 diabetes and is accompanied by an increased risk for complications, morbidity, and mortality. Prospective studies on DEB in the challenging transition to adulthood are scarce. This longitudinal study examined DEB over a 1-year period and investigated the directionality of effects linking DEB to diabetes-specific functioning and depressive symptoms in adolescents and emerging adults. RESEARCH DESIGN AND METHODS: Three hundred youth (16-28 years old) with type 1 diabetes participated in a two-wave longitudinal study. Questionnaires measured DEB (Diabetes Eating Problem Survey-Revised [DEPS-R]), self-management, diabetes distress, and depressive symptoms. HbA1c values were obtained from physicians. Mixed ANOVA and cross-lagged analysis were used to examine prospective changes and directionality of effects, respectively. RESULTS: Mean DEB remained stable in the total sample, but significant individual differences were observed based on the cutoff score of the DEPS-R: 19% displayed persistent DEB and 8% increased and 7.3% decreased in DEB over time. The remaining individuals scored low on DEB over time. These four groups were differentiated based on insulin restriction, omission, diabetes-specific functioning, and depressive symptoms. Cross-lagged analyses indicated that DEB predicted relative increases in depressive symptoms over time, whereas reciprocal associations with glycemic control were found. CONCLUSIONS: This longitudinal study highlights the substantial impact DEB may have in the transition to adulthood, with a substantial portion of youth with type 1 diabetes being at risk for clinical DEB. Prospective pathways linking DEB to functioning were found, emphasizing the clinical relevance of assessing DEB over time.

Mindfulness, Worries, and Parenting in Parents of Children With Type 1 Diabetes.

OBJECTIVE: Parents of children with type 1 diabetes (T1D) often experience distress and worries, which may negatively impact their parenting behaviors. The current study investigates parental mindfulness (i.e., an enhanced attention to and awareness of current experiences or present reality) as a resilience mechanism. Using a daily diary approach, the predictive role of parental mindfulness for daily diabetes-related worries was examined, its impact upon protective parenting behaviors, and its buffering role in the relationship between daily worries and protective parenting behaviors. METHODS: Participants were 56 parents of 40 children with T1D (2-12 years). Trait mindfulness was assessed with the Mindful Attention Awareness Scale. Subsequently, parents completed a diary for 14 consecutive days, assessing parental worries about hypo- and hyperglycemia and general and diabetes-specific parental protective behavior. RESULTS: Multilevel analyses showed that parental diabetes-related worries fluctuated substantially across days and positively predicted daily protective behavior. Higher levels of parental mindfulness predicted less daily worries about hypoglycemia and lower engagement in general protective behavior and hypoglycemia avoidance behavior. In addition, the relationship between worries about hyperglycemia and general protective behavior was moderated by parental mindfulness. CONCLUSIONS: The present findings highlight the importance of daily parental worries in explaining parental protective behaviors on a daily basis. Mindfulness emerged as a promising resilience factor in parents of children with T1D, resulting in less daily worries and protective parenting. These results have important clinical implications and point to the promising role of mindfulness interventions in this context.

The NSSI Family Distress Cascade Theory.

Nonsuicidal self-injury (NSSI) is a complex behaviour and occurs most commonly during adolescence. This developmental period is characterized by the drive to establish an equilibrium between personal autonomy and connectedness with primary caregivers. When an adolescent self-injures, caregivers often experience confusion about how to react. Reports of feeling guilt, fear, and shame are common in the wake of learning about a child's self-injury. This cascade of negative feelings and self-appraisals may lead to hypervigilance and increased caregiver efforts to control the child's behaviour. The adolescent may experience this as an intrusion, leading to worse family functioning and increased risk of NSSI. This cascade is not well acknowledged or articulated in current literature. This article remedies this gap by presenting the NSSI Family Distress Cascade.