Protocol for the Promoting Resilience in Stress Management (PRISM) intervention: A multi-site randomized controlled trial for adolescents with type 1 diabetes.

BACKGROUND: Adolescents with type 1 diabetes (T1D) are at high risk for elevated diabetes distress, which greatly impacts diabetes management, glycemic outcomes and overall quality of life. Developing protective skills and "resilience resources" to navigate adversity and manage diabetes distress has high potential to help adolescents with T1D achieve optimal behavioral, psychological, and health outcomes. The "Promoting Resilience in Stress Management" (PRISM) program is a manualized, brief, skills-based intervention delivered over 6 months via two 45-60 min one-on-one sessions and a family meeting with a PRISM coach, and supplemented by booster calls and a digital app. This trial (PRISM versus usual care)is designed to:: (1) assess PRISM's impact on glycemic outcomes and diabetes distress among adolescents with T1D, and (2) explor PRISM's impact on resilience, self-reported adherence, and quality of life. METHODS: We describe the protocol for a multi-site randomized controlled trial designed for adolescents ages 13-18 with elevated diabetes distress. The primary trial outcomes are glycemic outcomes and diabetes distress 6 months post-randomization. Secondary outcomes include resilience, self-reported adherence, and QOL 6 months post-randomization. Our hypothesis is that youth in the PRISM group will demonstrate better glycemic outcomes and improved diabetes distress, adherence, resilience, and QOL compared to usual care. CONCLUSIONS: This study will provide methodologically rigorous data and evidence regarding a novel intervention to promote resilience among adolescents with T1D and elevated diabetes distress. This research has the potential to offer a practical, skills-based curriculum designed to improve outcomes for this high-risk group. TRIAL REGISTRATION: Prospectively registered at Clinicaltrials.gov (NCT03847194).

Diabetes-Related Worries and Coping Among Youth and Young Adults With Type 1 Diabetes.

OBJECTIVE: Although mood and anxiety symptoms are common in youth with type 1 diabetes (T1D), little research has described their worries across developmental stages or the strategies they use to cope with these worries. This secondary data analysis aimed to describe and characterize common T1D-related worries and coping strategies from middle childhood through young adulthood. METHODS: Twenty-three youth (9 children, 7 adolescents, and 7 young adults) completed semistructured qualitative interviews about health-related quality of life. We coded interview transcripts using thematic analysis to generate common themes of diabetes-related worries and coping strategies. RESULTS: Participants' worries fell into four major themes: Managing Blood Glucose, Self-Efficacy for Diabetes Management, Interpersonal Relationships, and Lifestyle Impact, and eight youth denied having diabetes-related worries. Coping strategies fell into the three major themes: Attempts to Change Source of Worry, Attempts to Change Reactions to Worry, and Attempts to Orient Away from the Worry. CONCLUSIONS: Youths' worries about various aspects of living with and feeling able to self-manage diabetes are important to consider across pediatric development as they can impact youths' participation in daily activities and future plans. By adolescence, youth report longer-term worries about the health and lifestyle implications of diabetes. Youths' reported coping strategies are generally consistent with existing coping frameworks, though our data suggest some possible refinements. Social support emerged as an important coping strategy for all age groups. Thus, interventions supporting youth in building and strengthening their social networks may be particularly beneficial in helping youth cope with their diabetes-related worries across development.

"It Just Kind of Feels Like a Different World Now:" Stress and Resilience for Adolescents With Type 1 Diabetes in the Era of COVID-19.

Purpose: The COVID-19 pandemic has been a major stressor for adolescents. Given the unique implications of the pandemic for youth with type 1 diabetes (T1D), who already navigate multiple stressors as a function of their chronic condition, we aimed to describe the impact of the pandemic on adolescents with T1D and describe their coping strategies and resilience resources. Research Method: In a 2-site (Seattle WA, Houston TX) clinical trial of a psychosocial intervention targeting stress/resilience, adolescents 13-18 years old with T1D ≥ 1 year and elevated diabetes distress were enrolled August 2020 - June 2021. Participants completed a baseline survey about the pandemic, including open-ended questions about the effects of the pandemic, what was helping them navigate, and how it impacted T1D management. Hemoglobin A1c (A1c) was extracted from clinical records. Free text responses were analyzed using an inductive content approach. Survey responses and A1c were summarized using descriptive statistics and associations were assessed by Chi-squared tests. Results: Adolescents (n=122) were 56% female. 11% of adolescents reported diagnosis of COVID-19 and 12% had a family member/other important person die from COVID-19 complications. Adolescents described Social Relationships, Personal Health/Safety Practices, Mental Health, Family Relationships, and School to be primary areas affected by COVID-19. Helpful resources included: Learned Skills/Behaviors, Social Support/Community, and Meaning-Making/Faith. Among participants indicating that the pandemic had an impact on their T1D management (n=35), the most commonly described areas were: Food, Self-Care, Health/Safety, Diabetes Appointments, and Exercise. Compared to adolescents who reported minimal difficulty managing T1D during the pandemic (71%), those reporting moderate to extreme difficulty (29%) were more likely to have A1C ≥ 8% (80% vs. 43%, p<.01). Conclusions: Results underscore the pervasive impact of COVID-19 on teens with T1D across multiple major life domains. Their coping strategies aligned with stress, coping, and resilience theories and suggest resilient responses in the face of stress. Despite experiencing pandemic-related stressors in many areas, diabetes-related functioning was relatively protected for most teens, highlighting their diabetes-specific resilience. Discussing the pandemic impact on T1D management may be an important focus for clinicians, especially for adolescents with diabetes distress and above-target A1C.

'I don't sleep through the night': Qualitative study of sleep in type 1 diabetes.

AIMS: Individuals with type 1 diabetes (T1D) experience greater sleep disturbances than people without diabetes. However, the nature, causes and effects of sleep disruption in individuals with T1D and their family are not well understood. The purpose of this study was to explore and characterise the perspectives of parents, partners and individuals with diabetes about T1D-related sleep issues. METHODS: Participants included 44 youth and adults with T1D (ages 9-69), 24 parents of youth with T1D, and 14 partners of adults with T1D, recruited from diabetes clinics at two academic medical centres in the Southwestern and Midwestern United States. Semi-structured qualitative interviews were transcribed verbatim, coded and analysed using hybrid thematic analysis. RESULTS: We identified two central themes: Emotional Distress and Sleep Disruption. Each theme had multiple subthemes, and the two central themes were related to one another via a shared subtheme, Worry Impacting Sleep. CONCLUSIONS: Complex T1D-related emotional and behavioural factors both contributed to and resulted from sleep difficulties. Diabetes care providers should routinely assess for sleep concerns in people with T1D and their parents and partners. It may be important to consider both diabetes-related causes of sleep disruptions and potential impacts on self management and emotional functioning.

"We are a family with diabetes": Parent perspectives on siblings of youth with type 1 diabetes.

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 ± 3.6 years) participated in semistructured interviews about T1D-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 T1D-related quality of life. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Health-related quality of life in parents and partners of people with type 1 diabetes: Development and validation of type 1 diabetes and life (T1DAL) measures.

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 (T1DAL) measures, with versions for parents of youth age <8, 8-11, 12-17, and 18-25 years, and for partners of people age ≥18 years with T1D. METHOD: First, we conducted qualitative interviews (total parents/partners n = 38) to develop draft measures and piloted them (total n = 20). Next, we tested the measures' psychometric properties. Participants (total across versions n = 813) at six T1D Exchange Clinic Network sites completed the appropriate T1DAL measure and validated measures of related constructs. We then reduced each T1DAL measure to 20-30 items in length based on psychometric data and participant feedback. Eleven participants reviewed the final measures via cognitive debriefing. RESULTS: The T1DAL measures for parents and partners demonstrated good internal consistency (α = .80-.88) and test-retest reliability (r = .73-.86). Correlations with measures of general quality of life, generic and diabetes-specific HRQOL, and diabetes burden demonstrated construct validity. Factor analyses identified 3-4 subscales/measure. Participants reported being satisfied with the shortened measures, which took 5-10 minutes to complete. DISCUSSION: The new T1DAL measures for parents and partners of people with T1D are reliable, valid, and ready for use in research and clinical settings. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Design and psychometrics for new measures of health-related quality of life in adults with type 1 diabetes: Type 1 Diabetes and Life (T1DAL).

AIMS: To use a three-phase process to develop and validate new self-report measures of diabetes-specific health-related quality of life (HRQOL) for adults with type 1 diabetes. We report on four versions of the Type 1 Diabetes and Life (T1DAL) measure for people age 18-25, 26-45, 46-60, and over 60 years. METHODS: We first conducted qualitative interviews to guide measure creation, then piloted the draft measures. We evaluated psychometric properties at six T1D Exchange Clinic Network sites via completion of T1DAL and validated measures of related constructs. Participants completed the T1DAL again in 4-6 weeks. We used psychometric data to reduce each measure to 23-27 items in length. Finally, we obtained participant feedback on the final measures. RESULTS: The T1DAL-Adult measures demonstrated good internal consistency (α = 0.85-0.88) and test-retest reliability (r = 0.77-0.87). Significant correlations with measures of general quality of life, generic and diabetes-specific HRQOL, diabetes burden, self-management, and glycemic control demonstrated validity. Factor analyses yielded 4-5 subscales per measure. Participants were satisfied with the final measures and reported they took 5-10 min to complete. CONCLUSIONS: The strong psychometric properties of the newly developed self-report T1DAL measures for adults with type 1 diabetes make them appropriate for use in clinical research and care.

Defining features of diabetes resilience in emerging adults with type 1 diabetes.

BACKGROUND: Emerging adulthood presents unique challenges for type 1 diabetes (T1D) management. Barriers to achieving optimal diabetes outcomes have been studied but less is known about how emerging adults overcome these challenges. Characterizing emerging adults' protective factors may help guide T1D care during this developmental period. We anticipated identifying social, cognitive, and behavioral protective factors and were open to additional themes. METHODS: We analyzed transcripts from semi-structured qualitative interviews with 62 emerging adults (age 18-24 years) with T1D using hybrid thematic analysis. Interviews queried about participants' perspectives on diabetes management challenges, how they overcome challenges, and diabetes resilience. RESULTS: We categorized responses into three types of protective factors: (a) Social: Interpersonal strategies such as obtaining tangible support (especially from parents) and emotional support from friends, medical professionals, and community leaders. (b) Cognitive: Believing one can live a "normal" life with T1D, benefit-finding, and viewing diabetes management as an important part of life. (c) Behavioral: Proactively planning for diabetes challenges, maintaining a consistent routine while allowing for flexibility, balancing diabetes and non-diabetes activities, and using diabetes-specific and general technologies to support self-management. CONCLUSIONS: The adaptive approaches emerging adults with T1D use to handle the challenges of diabetes include seeking interpersonal support, managing their thoughts about T1D, and taking specific actions to prevent or resolve challenges. Helping emerging adults identify and strengthen their protective factors has potential to affect clinical outcomes. Strengths-based assessment and clinical attention to protective factors may prepare adolescents to successfully manage the challenges of transition to adult care.

Type 1 Doing Well: Pilot Feasibility and Acceptability Study of a Strengths-Based mHealth App for Parents of Adolescents with Type 1 Diabetes.

Background: We evaluated the feasibility and acceptability of a pilot behavioral intervention delivered to parents of adolescents with type 1 diabetes (T1D) via mobile-friendly web app. The Type 1 Doing Well app aimed to promote supportive family diabetes management by helping parents recognize and reinforce teens' positive diabetes-related behaviors ("strengths"). Methods: Parents (n = 80, 74% recruitment) of adolescents (age range = 12-17 years, M = 15.3 ± 1.5 years, 59% female, 56% insulin pump, M hemoglobin A1c (HbA1c) = 9.0% ± 2.1%) were randomized 2:1 to intervention or control (i.e., usual medical care with or without app) for 3-4 months between diabetes appointments. The app prompted parents daily to track adolescents' strengths and generated weekly summaries of their teen's top strengths. Parents could access a library of text messages to praise their teens. Exploratory pre/post data included questionnaires (98% completed) and HbA1c. Results: Parents used the app for M = 106.1 ± 37.1 days, logging in ≥once/day on 80% of days. Ninety-one percent of parents used the app ≥2 days/week on average. Parents viewed M = 5.6 ± 4.7 weekly summaries and "favorited" 15 praise texts in the library. App acceptability ratings (7-point scale) were high: Satisfaction 5.0 ± 1.5, Usefulness 4.8 ± 1.5, Ease of Use 6.2 ± 0.8, and Ease of Learning 6.5 ± 0.8. Parents (n = 48) and adolescents (n = 47) gave positive feedback and suggestions via qualitative interviews. There were no significant between-group differences for change in exploratory outcomes (HbA1c, questionnaires). Conclusions: Type 1 Doing Well was feasible to deliver and highly acceptable and engaging for parents of adolescents with T1D. It may have a larger impact on behavioral or clinical outcomes as part of a multicomponent intervention protocol. Trial Registration: ClinicalTrials.gov NCT02877680.