Health promotion challenges for young adults living with intellectual disability and type 1 diabetes

2021 ◽  
pp. 174462952110327
Author(s):  
Anne L Marks ◽  
Natasha Mahoney ◽  
Yu-Wei Chen ◽  
Reinie Cordier ◽  
Angus Buchanan ◽  
...  
Keyword(s):  
Health Promotion ◽  
Type 1 Diabetes ◽  
Young Adults ◽  
Intellectual Disability ◽  
Barriers And Facilitators ◽  
Self Management ◽  
Service Support ◽  
Health Support ◽  
Level Monitoring

Background: Self-management of type 1 diabetes mellitus (T1DM) can be challenging for people with intellectual disability. Often, parents provide health support due to lack of appropriate services outside the home. The study aim was to identify barriers and facilitators to T1DM self-management for young adults with intellectual disability and the implications for health promotion. Methods: Five male participants with intellectual disability, aged 17–26 years, and seven parents were interviewed between October 2017 and February 2019. Interview data were descriptively analysed. Findings: Two categories for barriers and facilitators were identified: 1) Diabetes self-management is complex (carbohydrate counting, blood glucose level monitoring, insulin therapy); 2) support for diabetes care (reliance on parents and carers, the National Disability Insurance Scheme, mainstream diabetes service support). Conclusions: Parents are critical for the support of people with intellectual disability and T1DM in the absence of disability staff with appropriate health skills.

805-P: Barriers and Facilitators of Participation in Clinical Trials among Youth and Young Adults with Type 1 Diabetes and Their Caregivers

Diabetes ◽  
2019 ◽  
Vol 68 (Supplement 1) ◽  
pp. 805-P
Author(s):  
SARAH C. WESTEN ◽  
LINDSAY M. ANDERSON ◽  
SAMANTHA A. BARRY ◽  
SYDNEY LOOK ◽  
STEFANIA PINTO ◽  
...  
Keyword(s):  
Clinical Trials ◽  
Type 1 Diabetes ◽  
Young Adults ◽  
Barriers And Facilitators ◽  
Youth And Young Adults

scholarly journals Racial-Ethnic Inequity in Young Adults With Type 1 Diabetes

2020 ◽  
Vol 105 (8) ◽  
pp. e2960-e2969 ◽  
Author(s):  
Shivani Agarwal ◽  
Lauren G Kanapka ◽  
Jennifer K Raymond ◽  
Ashby Walker ◽  
Andrea Gerard-Gonzalez ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Young Adults ◽  
Technology Use ◽  
Self Management ◽  
Diabetes Distress ◽  
Diabetes Technology ◽  
Racial Ethnic ◽  
Hispanic White ◽  
Hba1c Levels

Abstract Context Minority young adults (YA) currently represent the largest growing population with type 1 diabetes (T1D) and experience very poor outcomes. Modifiable drivers of disparities need to be identified, but are not well-studied. Objective To describe racial-ethnic disparities among YA with T1D and identify drivers of glycemic disparity other than socioeconomic status (SES). Design Cross-sectional multicenter collection of patient and chart-reported variables, including SES, social determinants of health, and diabetes-specific factors, with comparison between non-Hispanic White, non-Hispanic Black, and Hispanic YA and multilevel modeling to identify variables that account for glycemic disparity apart from SES. Setting Six diabetes centers across the United States. Participants A total of 300 YA with T1D (18-28 years: 33% non-Hispanic White, 32% non-Hispanic Black, and 34% Hispanic). Main Outcome Racial-ethnic disparity in HbA1c levels. Results Non-Hispanic Black and Hispanic YA had lower SES, higher HbA1c levels, and much lower diabetes technology use than non-Hispanic White YA (P < 0.001). Non-Hispanic Black YA differed from Hispanic, reporting higher diabetes distress and lower self-management (P < 0.001). After accounting for SES, differences in HbA1c levels disappeared between non-Hispanic White and Hispanic YA, whereas they remained for non-Hispanic Black YA (+ 2.26% [24 mmol/mol], P < 0.001). Diabetes technology use, diabetes distress, and disease self-management accounted for a significant portion of the remaining non-Hispanic Black–White glycemic disparity. Conclusion This study demonstrated large racial-ethnic inequity in YA with T1D, especially among non-Hispanic Black participants. Our findings reveal key opportunities for clinicians to potentially mitigate glycemic disparity in minority YA by promoting diabetes technology use, connecting with social programs, and tailoring support for disease self-management and diabetes distress to account for social contextual factors.

scholarly journals A cognitive behavioral therapy intervention to reduce fear of hypoglycemia in young adults with type 1 diabetes (FREE): study protocol for a randomized controlled trial

Trials ◽  
2019 ◽  
Vol 20 (1) ◽  
Author(s):  
Pamela Martyn-Nemeth ◽  
Jennifer Duffecy ◽  
Laurie Quinn ◽  
Chang Park ◽  
Dan Mihailescu ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Young Adults ◽  
Glycemic Control ◽  
Behavioral Therapy ◽  
Attention Control ◽  
Self Management ◽  
Control Group ◽  
Fear Of Hypoglycemia ◽  
Attention Control Group

Abstract Background In persons with type 1 diabetes (T1D), hypoglycemia is the major limiting factor in achieving optimal glycemic control. All persons with T1D are at risk for hypoglycemia (blood glucose level < 70 mg/dl), which is life-threatening and accompanied by serious physical and psychological symptoms, resulting in profound fear of hypoglycemia (FOH) and reduced quality of life. Young adults with T1D are at risk for FOH and have worse glycemic control and self-management behavior than other age groups with T1D. FOH also results in increased glycemic variability (GV). A major gap exists in how to manage FOH. Our overall objective is to reduce FOH and improve diabetes self-management, glycemic control, and GV in young adults with T1D to reduce or delay diabetes complications and improve quality of life. We aim to (1) determine the feasibility and acceptability of an eight-week cognitive behavioral therapy (CBT)-based Fear Reduction Efficacy Evaluation (FREE) intervention in young adults with T1D who experience FOH; and (2) determine the impact of the FREE intervention, compared to an attention control group, on the outcomes FOH, self-management, glycemic control (A1C), and glycemic variability (continuous glucose monitoring recordings). Methods/design A randomized controlled trial in 50 young adults aged 18 to 35 years with T1D will be used. Eligible subjects will be randomized to the intervention program (Fear Reduction Efficacy Evaluation [FREE]) or attention control group. A one-week run-in phase is planned, with baseline measures of FOH, self-management behavior, A1C, and real-time continuous glucose monitoring recordings (RT-CGM) to calculate GV for both groups. The intervention group will participate in eight weekly individual one-hour sessions using CBT and exposure treatment for specific fears. RT-CGM and a daily FOH diary will be used as feedback cues as part of the FREE program. The attention control group will participate in eight weekly individual one-hour diabetes self-management education (DSME) sessions and wear a RT-CGM device (to measure GV only) over 8 weeks. At completion, FOH will be measured, and RT-CGM recordings will be analyzed to determine differences between the FREE and control groups. Discussion Findings from this proposed pilot study will serve as the foundation for a larger trial to reduce FOH and improve self-management, glycemic control, and GV. Trial registration ClinicalTrials.gov: A cognitive behavioral therapy (CBT) intervention to reduce fear of hypoglycemia in type 1 diabetes, NCT03549104. Registered June 7, 2018

scholarly journals Embedding a user-centred approach in the development of complex behaviour change intervention to improve outcomes for young adults living with type 1 diabetes: The D1 Now Study

2018 ◽  
Vol 1 ◽  
pp. 8 ◽  
Author(s):  
Deirdre M.J. Walsh ◽  
Lisa Hynes ◽  
Mary Clare O'Hara ◽  
Jenny Mc Sharry ◽  
Séan F. Dinneen ◽  
...  
Keyword(s):  
Systematic Review ◽  
Type 1 Diabetes ◽  
Young Adults ◽  
Young Adult ◽  
Service Providers ◽  
Phase 1 ◽  
Self Management ◽  
Theoretical Frameworks ◽  
Complex Behaviour

Background: Type 1 diabetes (T1D) is an auto-immune condition which requires intensive self-management. Diabetes self-management is challenging, especially during young adulthood. Effective interventions to improve outcomes for young adults (18-30 year olds) with T1D are needed. This paper describes the development of the D1 Now intervention, employing a user-centred approach to engage with stakeholders in parallel with the application of theory. Methods: Intervention development consisted of 4 phases: 1) the formation of a public and patient involvement (PPI) Young Adult Panel (YAP); 2) a systematic review to synthesise evidence regarding the effectiveness of interventions aimed at improving outcomes for young adults with T1D; 3) understand young adults’ diabetes self-management behaviour through engagement with key stakeholders; and 4) an expert consensus meeting to discuss self-management strategies identified in Phase 1 and 3 that would form the core components of the D1 Now intervention. Results: The YAP resulted in meaningful involvement between young adults, researchers and service providers. The systematic review highlighted a lack of quality intervention studies. Qualitative findings highlighted how young adult self-management is driven by complex interactions between external resources, which influence capability, and motivation. The expert panel in Phase 4 highlighted focus areas to improve outcomes for young adults and implementation strategies. Subsequent to these 4 phases, 3 intervention components have been identified: 1) a key worker to liaise with the young adult; 2) an online portal to facilitate relationship building between staff and young adults; and 3) an agenda setting tool to facilitate joint decision-making. Conclusions: This study described the systematic development of an intervention underpinned by theoretical frameworks and PPI, and has identified components for the D1 Now intervention. The resulting intervention content will now be subject to an intervention optimisation process.

Diabetes Self-Management Education and Support to Improve Outcomes for Children and Young Adults With Type 1 Diabetes: An Umbrella Review of Systematic Reviews

2021 ◽  
pp. 263501062110318
Author(s):  
Latika Rohilla ◽  
Sukhpal Kaur ◽  
Mona Duggal ◽  
Prahbhjot Malhi ◽  
Bhavneet Bharti ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Young Adults ◽  
Systematic Reviews ◽  
Management Education ◽  
Psychosocial Outcomes ◽  
Self Management ◽  
Umbrella Review ◽  
Related Research ◽  
Children And Young Adults

Purpose The objectives of this umbrella review were to describe various aspects of diabetes self-management education and support (DSMES)-related interventions and their effect on clinical, behavioral, and psychosocial outcomes among children and young adults with type 1 diabetes (T1DM) and identify gaps in current DSMES-related research. Methods An umbrella review of systematic reviews on DSMES interventions was conducted in accordance with the PRISMA 2009 statement. Four international medical databases were searched for eligible review articles published in English in the last 10 years that dealt with children and youths with T1DM and were conducted in accordance with a priori protocol. Results Out of the 234 citations screened, only 8 systematic reviews representing 166 studies were considered eligible for further analysis. Glycemic management (A1C) is the most common outcome variable (108 studies). Common behavioral and psychosocial outcome variables examined are episodes of hypoglycemia (27 studies) and diabetic ketoacidosis (21 studies) and self-care behavior and generic quality of life (20 studies each). Several gaps in DSMES-related research studies are identified, including uneven geographical distribution of study population, methodological weaknesses in study designs, missing important outcome variables, use of nonstandardized assessment tools, and lack of assessment of the sustainability of effects. Conclusion The effects of DSMES interventions on clinical, behavioral, and psychosocial outcomes are varied. The heterogeneity of implementation and evaluation makes it difficult to draw clear conclusions about elements of DSMES that are most effective. There is a need for long-term assessment of the psychosocial and behavioral outcomes using validated and generalizable instruments.

scholarly journals Supporting self-management and clinic attendance in young adults with type 1 diabetes: development of the D1 Now intervention

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Eimear C. Morrissey ◽  
Bláthín Casey ◽  
Lisa Hynes ◽  
Sean F. Dinneen ◽  
Molly Byrne ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Young Adults ◽  
Young Adult ◽  
Behaviour Change ◽  
Design Process ◽  
Self Management ◽  
Behaviour Change Techniques ◽  
Support Worker ◽  
High Blood Glucose

Abstract Background Self-management of type 1 diabetes (T1D) is complex and can be particularly challenging for young adults. This is reflected in the high blood glucose values and rates of clinic non-attendance in this group. There is a gap for a theory-based intervention informed by key stakeholder opinions to support and improve self-management in young adults with T1D. Purpose The aim of the work was to systematically co-develop an evidence-based and stakeholder-led intervention to support self-management and clinic engagement in young adults living with T1D in Ireland. Co-development was led by the Young Adult Panel. Methods The Behaviour Change Wheel was used to guide the development. Five evidence sources were used to inform the process. An iterative co-design process was used with the Young Adult Panel. Initial intervention components were refined and feasibility tested using qualitative methods. Results Environmental restructuring, education and training were selected as appropriate intervention functions. The co-design process, along with qualitative refinement and feasibility work, led to the final intervention content which consisted of 17 behaviour change techniques. The final D1 Now intervention consists of three components: a support worker, an agenda setting tool and an interactive messaging service. Conclusions The D1 Now intervention is now at pilot evaluation stage. Its transparent and systematic development will facilitate evaluation and future replications.

scholarly journals A Digital Health Intervention (SweetGoals) for Young Adults With Type 1 Diabetes: Protocol for a Factorial Randomized Trial

10.2196/27109 ◽  
2021 ◽  
Vol 10 (2) ◽  
pp. e27109
Author(s):  
Catherine Stanger ◽  
Tobias Kowatsch ◽  
Haiyi Xie ◽  
Inbal Nahum-Shani ◽  
Frances Lim-Liberty ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Young Adults ◽  
Glycemic Control ◽  
Randomized Trial ◽  
Health Coaching ◽  
Mobile App ◽  
Self Management ◽  
Target Range ◽  
Secondary Outcomes

Background Many young adults with type 1 diabetes (T1D) struggle with the complex daily demands of adherence to their medical regimen and fail to achieve target range glycemic control. Few interventions, however, have been developed specifically for this age group. Objective In this randomized trial, we will provide a mobile app (SweetGoals) to all participants as a “core” intervention. The app prompts participants to upload data from their diabetes devices weekly to a device-agnostic uploader (Glooko), automatically retrieves uploaded data, assesses daily and weekly self-management goals, and generates feedback messages about goal attainment. Further, the trial will test two unique intervention components: (1) incentives to promote consistent daily adherence to goals, and (2) web health coaching to teach effective problem solving focused on personalized barriers to self-management. We will use a novel digital direct-to-patient recruitment method and intervention delivery model that transcends the clinic. Methods A 2x2 factorial randomized trial will be conducted with 300 young adults ages 19-25 with type 1 diabetes and (Hb)A1c ≥ 8.0%. All participants will receive the SweetGoals app that tracks and provides feedback about two adherence targets: (a) daily glucose monitoring; and (b) mealtime behaviors. Participants will be randomized to the factorial combination of incentives and health coaching. The intervention will last 6 months. The primary outcome will be reduction in A1c. Secondary outcomes include self-regulation mechanisms in longitudinal mediation models and engagement metrics as a predictor of outcomes. Participants will complete 6- and 12-month follow-up assessments. We hypothesize greater sustained A1c improvements in participants who receive coaching and who receive incentives compared to those who do not receive those components. Results Data collection is expected to be complete by February 2025. Analyses of primary and secondary outcomes are expected by December 2025. Conclusions Successful completion of these aims will support dissemination and effectiveness studies of this intervention that seeks to improve glycemic control in this high-risk and understudied population of young adults with T1D. Trial Registration ClinicalTrials.gov NCT04646473; https://clinicaltrials.gov/ct2/show/NCT04646473 International Registered Report Identifier (IRRID) PRR1-10.2196/27109

scholarly journals Fear of hypoglycemia: Influence on glycemic variability and self-management behavior in young adults with type 1 diabetes

2017 ◽  
Vol 31 (4) ◽  
pp. 735-741 ◽  
Author(s):  
Pamela Martyn-Nemeth ◽  
Laurie Quinn ◽  
Sue Penckofer ◽  
Chang Park ◽  
Vanessa Hofer ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Young Adults ◽  
Glycemic Variability ◽  
Self Management ◽  
Management Behavior ◽  
Fear Of Hypoglycemia
Sign in / Sign up

Export Citation Format

Share Document