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Having a child with type 1 diabetes (T1D) impacts the entire family system. Parental distress and burden have been well studied, but other family members, including siblings, have received little attention. Based on research about family life and sibling experiences in other chronic condition populations (e.g., autism, cancer), we expected parents of youth with T1D would report that siblings participated in T1D management and that T1D had a psychological impact on siblings. As part of a larger qualitative study, parents of youth with T1D age 5-17 (M = 10.8 [+ or -] 3.6 years) participated in semistructured interviews about TID-specific health-related quality of life. For this study, we conducted secondary analyses on transcripts from 20 parents (95% mothers) from households with at least 1 sibling of the child with T1D. Three themes emerged: (a) siblings share the workload and help with T1D management, (b) T1D takes an emotional toll on siblings, and (c) parents feel guilty about prioritizing T1D over siblings' needs and desires. Parents recognized siblings have impactful roles in T1D management and family functioning. Future research into these themes can guide clinical and research efforts to develop sibling-inclusive resources and interventions for families with T1D. Enhancing family-focused interventions to recognize and support the needs of siblings may ultimately improve family TID-related quality of life. Public Significance Statement The needs and experiences of siblings of youth with chronic health conditions may be overlooked in clinical and research and care. This qualitative study highlights parents' perspectives on how siblings contribute to supporting youth with type 1 diabetes and how they may be affected by their sibling's diabetes. Findings suggest potential areas of need to support siblings. Keywords: type 1 diabetes, siblings, family, quality of life, qualitative research, Type 1 diabetes (T1D) management is demanding and affects many aspects of family life. Around-the-clock T1D management consists of monitoring blood glucose levels and managing blood glucose fluctuations by changing [...]

Introduction: Despite the significant impact of type 1 diabetes (T1D) on family, few instruments are available to assess health-related quality of life (HRQOL) among family members of people with T1D. This study aimed to develop and evaluate the psychometric properties of new measures of diabetes-specific HRQOL for parents and partners of people with T1D. We report on the multistep development and validation process for the self-report Type 1 Diabetes and Life (TIDAL) measures, with versions for parents of youth age Public Significance Statement This study developed a set of validated questionnaires to measure health-related quality of life in parents and partners of people with type 1 diabetes. The experiences of family members are important and have implications for the health and well-being of people with diabetes, yet there have been few measures to accurately and reliably assess their quality of life. These new measures can be used in clinical practice and research settings. Keywords: patient-reported outcomes, quality of life, psychosocial, assessment, family Supplemental materials: https://doi.org/10.1037/fsh0000507.supp, Patient-reported outcomes are important to assess and report in clinical trials and patient care (Lohr & Zebrack, 2009), especially for people with chronic conditions including type 1 diabetes (T1D) (Agiostratidou [...]

Developmental shifts during early adolescence relate to type 1 diabetes (T1D) self-management, increased risk of emotional distress, and worsening health status. Less is known about positive experiences related to T1D. This study evaluated associations of positive well-being (PWB) with diabetes burden, self-management, and glycemic control. Youth (N = 55, age = 12-13 years; X-bar age = 12.75 + 0.56 years, 50.9% male, 38.2% non-Caucasian) reported PWB, depressive symptoms, and diabetes burden. Parents reported on overall T1D adherence. Adherence behaviors and glycemic control were assessed objectively. Higher PWB correlated with lower depressive symptoms (r[subscript s] = -0.45), less diabetes burden (r[subscript s] = -0.48), and better glycemic control (r[subscript s] = -0.43), all p < 0.01. When controlling for diabetes duration, higher PWB correlated with lower depressive symptoms and better glycemic control. PWB was not related to demographics or adherence. Initial exploration suggests PWB is related to key diabetes constructs, and maybe valuable to consider along with efforts to support youth with T1D during a vulnerable developmental period.

BackgroundFamily conflict can reduce adolescent adherence to type 1 diabetes management tasks. The Family Teamwork in-person intervention was shown to be efficacious in reducing conflict and low adherence to diabetes-related tasks. Its reach and potential impact, however, were limited by the need to deliver the intervention sessions in person. Relational agents (ie, computerized versions of humans) have been shown to appeal to diverse audiences and may be an acceptable replacement for a human in technology-based behavior change interventions. ObjectiveThe purpose of this paper is to present the results of a pilot study assessing feasibility and acceptability of Diabetes Family Teamwork Online, an adapted version of the Family Teamwork intervention, delivered over the internet and guided by a relational agent. MethodsParent-adolescent dyads were recruited through a diabetes care clinic at a large tertiary care hospital in the southwestern United States. A one-group design, with assessments at baseline, immediate postintervention, and 3 months later, was used to assess feasibility. A priori feasibility criteria included an assessment of recruitment, completion, attrition, program satisfaction, therapeutic alliance, attitudes toward the relational agent, and data collection. The institutional review board at Baylor College of Medicine approved the protocol (H-37245). ResultsTwenty-seven adolescents aged 10 to 15 years with type 1 diabetes and their parents were enrolled. Criteria used to assess feasibility were (1) recruitment goals were met (n=20), (2) families completed ≥75% of the modules, (3) attrition rate was ≤10%, (4) program satisfaction was high (≥80% of families), (5) therapeutic alliance was high (average score of ≥60/84), (6) families expressed positive attitudes toward the relational agent (average item score of ≥5 on ≥4 items), (7) ≥80% of data were collected at post 1 and post 2, and (8) few technical issues (≤10%) occurred during intervention delivery. All feasibility criteria were met. Qualitative data confirmed that adolescents and parents had positive reactions to both the content and approach. ConclusionsThe Diabetes Family Teamwork Online intervention proved to be a feasible and acceptable method for enhancing communication around diabetes management tasks in families with an adolescent who has type 1 diabetes. International Registered Report Identifier (IRRID)RR2-10.2196/resprot.5817

Aim: Managing type 1 diabetes in young children can cause significant stress for parents. Continuous glucose monitoring (CGM) may reduce parental burden. The Strategies to Enhance CGM Use in Early Childhood (SENCE) trial randomized parents of children (ages 2 to <8 years) with type 1 diabetes to CGM with family behavioural intervention (CGM + FBI), CGM alone (Standard‐CGM) or blood glucose monitoring for 26 weeks before receiving CGM + FBI (BGM‐Crossover). This report assesses changes in psychosocial outcomes for all groups over 52 weeks. Methods: CGM + FBI (n = 45), Standard‐CGM (n = 42) and BGM‐Crossover (n = 44) participants completed psychosocial assessments at baseline, 26 weeks and 52 weeks. Repeated measures linear regression models evaluated change within and between treatment groups. Results: The BGM‐Crossover group reported improved diabetes burden (Δ −6.9, 95% CI [−11.3, −2.6], p = 0.003), fear of hypoglycaemia (Δ −6.4, CI [−10.1, −2.6], p = 0.002) and technology satisfaction (Δ 7.3, CI [2.4, 12.2], p = 0.005) from 26 to 52 weeks, similar to published findings in the CGM + FBI group over the first 26 weeks. The Standard‐CGM group reported increased technology satisfaction (Δ 7.3, CI [0.6, 14.0], p = 0.027) from baseline to 52 weeks. The CGM + FBI group reported less diabetes burden and fear of hypoglycaemia from baseline to 52 weeks, but changes were not statistically significant. Scores from 26 to 52 weeks did not deteriorate. Conclusions: Parents demonstrated psychosocial benefits following FBI that appeared to maintain without additional intervention. CGM‐focused education with behavioural support likely helps parents of young children with type 1 diabetes reduce burden and worry in the short‐ and long‐term. [ABSTRACT FROM AUTHOR]

Aim: To identify psychosocial predictors of medication adherence in young adults with youth‐onset type 2 diabetes in the Treatment Options for type 2 Diabetes in Adolescents and Youth (TODAY2) cohort. Methods: Participants (mean age: 26 years) completed validated psychosocial measures. Unannounced telephone pill counts were completed at T1 (baseline) and T2 (follow‐up, approximately 1 year later) to assess adherence to oral hypoglycaemia agents (OHAs). Adherence to insulin was assessed by self‐report. Logistic and linear regressions identified factors that predicted 'low adherence' (<80% of pills/insulin) and per cent adherence, adjusted for potential confounders. Results: Of 171 participants with OHA adherence scores at T1 and T2 (65% women, 43% Hispanic and 35% non‐Hispanic Black), 65.4% were low adherent. After adjustment (including T1 adherence), concerns about diabetes medicines (adverse effects, dependence) at T1 predicted higher odds of being low adherent (categorical) at T2 (p = 0.019). Housing insecurity (p = 0.045) and reporting ≥2 need insecurities (p = 0.027) at T1 predicted lower per cent adherence (continuous) at T2. Of 157 participants with insulin adherence scores at T1 and T2 (69% women, 38% Hispanic and 38% non‐Hispanic Black), 36.3% were low adherent. After adjustment (including T1 adherence), beliefs that medicines are overused predicted higher odds of insulin low adherence at T2 (p = 0.013), and beliefs that medicines are harmful (p = 0.004) and overused (p = 0.010) predicted lower per cent insulin adherence at T2. Conclusions: Suboptimal medication adherence, common in young adults with youth‐onset type 2 diabetes, is predicted by interfering beliefs about medicines and social factors. We must address these beliefs and unmet needs to develop tailored interventions for this vulnerable group. [ABSTRACT FROM AUTHOR]