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AIMS: This study examined the perceptions of the SHARE plus intervention and its effects on communication, collaboration, and involvement in day-to-day diabetes management in older adults with Type 1 diabetes (T1D) and their care partners. BACKGROUND: The SHARE plus intervention includes continuous glucose monitoring with a data sharing app that allows care partners to view glucose data on a smartphone and receive alerts. People with T1D and their care partners are educated about communication strategies, problem-solving strategies, and action planning when using glucose data sharing. DESIGN: Qualitative descriptive design. METHODS: Older adults with T1D wore a continuous glucose monitor for 3 months (n = 10). Care partners (n = 10) used a data-sharing app. The SHARE plus intervention consisted of one 90-min education session. Semi-structured interviews were conducted across 10 dyads (person with diabetes and care partner) following the 12-week study. A qualitative description and a constant comparison approach were used to examine similarities and differences in experiences. Interviews were transcribed, coded, and analysed for common themes. The manuscript adheres to COREQ EQUATOR checklist. RESULTS: The SHARE plus intervention increased diabetes knowledge across the dyads, improving confidence and helping partners understand how to navigate symptoms and behaviours and when to intervene. Dyads worked together to optimise diabetes management through improved communication, collaboration, and management of disagreements. Although the majority of persons with diabetes and their care partners reported no conflictual communication, disagreements about diabetes management remained in some dyads. The SHARE plus intervention impacted care partners in various ways from a psychological perspective. While live-in-care partners felt peace of mind, care partners living away from persons with diabetes had some increased worry and concern. CONCLUSION: The SHARE plus intervention results can help guide future development of diabetes dyadic care and education interventions using diabetes technology. RELEVANCE TO CLINICAL PRACTICE: The SHARE plus intervention is a brief, practical intervention that can help diabetes clinicians improve communication and collaboration among spouses living with older adults with T1D who use continuous glucose monitoring with data sharing. PATIENT CONTRIBUTION: A person with diabetes was part of the research team and assisted with design of the intervention and subsequent interviews and analysis.
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Glucemia , Diabetes Mellitus Tipo 1 , Humanos , Anciano , Diabetes Mellitus Tipo 1/psicología , Automonitorización de la Glucosa Sanguínea/psicología , Investigación Cualitativa , Difusión de la Información , GlucosaRESUMEN
We examined support for type 1 diabetes in casual versus committed romantic relationships and links to blood glucose, self-care, and affect in 101 young adults (Mage 18.8). Individuals provided survey and daily measures of support and blood glucose and affect during a 14-day diary period. Survey data indicated individuals viewed partners as helpful, with partners in committed relationships rated more helpful than those in casual relationships. Daily assessments indicated partners were seen as only moderately helpful. Individuals in committed relationships discussed diabetes with partners on more diary days than those in casual relationships. When individuals in any relationship type experienced more helpful partner support than their average, they reported higher positive and lower negative affect. However, those in casual relationships also experienced more negative affect and higher mean blood glucose the next day. Results suggest tradeoffs between immediate benefits and subsequent costs of partner support to adults in casual relationships.
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Diabetes Mellitus , Parejas Sexuales , Adolescente , Adulto , Glucemia , Humanos , Relaciones Interpersonales , Encuestas y Cuestionarios , Adulto JovenRESUMEN
Diabetes self-management education and support (DSMES) interventions must be accessible to all people with diabetes. To address equity in the delivery of DSMES, interventions should consider the unique needs of various populations. This article outlines the needs of a wide range of populations, including people with diabetes who are racially or ethnically diverse; have limited English proficiency or literacy; are deaf or hard of hearing; are blind or have low vision; are neurodiverse; live with learning disabilities or intellectual or developmental disabilities; have dementia or cognitive impairment; or are of sexual and/or gender minority. The authors discuss how best to tailor DSMES to meet the needs of these diverse groups.
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Care partners of older adults with type 1 diabetes often become part of the diabetes care team but lack knowledge of how to become involved with glucose management. This article describes a study confirming the feasibility of SHARE plus, a telehealth intervention involving continuous glucose monitoring and data-sharing to assist these individuals in working together on diabetes management. The intervention provides a strategy for increasing remote patient monitoring and facilitating care partner involvement in diabetes management.
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Background: Emerging adulthood is a period fraught with challenging life transitions for many and is especially difficult for individuals with type 1 diabetes, as they encounter more obstacles to independently managing their diabetes. We examined the barriers faced by emerging adults and parents of emerging adults with type 1 diabetes and the impact these barriers had on their lives. Methods: Emerging adults and parents of emerging adults with type 1 diabetes were recruited from primary care and specialty clinics and via social media posts. In the parent study, semi-structured interviews were conducted to understand what supported and did not support diabetes self-management. Interviews were transcribed, coded, and analyzed for common themes. This sub-analysis analyzed data related to financial challenges in accessing diabetes management equipment and supplies. Results: This study included emerging adults with type 1 diabetes (n = 33; mean age 20 ± 2.9 years) and parents of emerging adults with type 1 diabetes (n = 17; mean age 47.5 ± 6.9 years). The majority of emerging adults used an insulin pump and continuous glucose monitoring system (n = 24 [73%]). Four main themes emerged related to access to care: 1) affordability of diabetes management tools, 2) managing insurance, 3) communication with pharmacies and health care providers, and 4) emotional consequences of financial stress. Conclusion: The current health system is challenging for emerging adults with type 1 diabetes and parents and is causing substantial emotional and financial stress. Future research is needed to address interventions for helping emerging adults and their parents navigate the cost of living with diabetes.
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Background: Previous research has suggested beneficial glycemic outcomes for people with type 2 diabetes with the use of continuous glucose monitoring (CGM); yet, there is a dearth of data examining CGM in diverse populations. Additionally, the use of online peer support communities (OPSCs) can further support the application of CGM information to improve health behaviors. The purpose of this qualitative study was to assess participant experiences with a CGM+OPSC intervention. Methods: Semi-structured interviews were conducted after a 12-week combined CGM+OPSC intervention with Hispanic, Spanish-speaking people with type 2 diabetes not using insulin. The OPSC was managed by five trained bilingual peer facilitators. Interviews were conducted in Spanish. Audio recordings were translated and transcribed and then reviewed by the interviewer for accuracy. Emergent themes were identified through inductive thematic analysis. Results: Twenty-six participants completed interviews. Three main themes emerged from the data: 1) CGM supports participants' understanding of the relationship between glucose levels and health behaviors such as healthy eating, being active, taking medication, stress reduction, and improving sleep; 2) the OPSC reinforced how to make healthy choices through personal experiments, collective learning, and social support; and 3) CGM+OPSC supports behavior change and increases confidence. Conclusion: When combined, CGM+OPSC interventions appear to create a positive feedback loop to reinforce and optimize healthy behaviors for diabetes self-management in individuals with type 2 diabetes who are not on insulin. The provision of such an intervention tailored to Hispanic, Spanish-speaking individuals has the potential to address the health care disparity seen in this population.
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PURPOSE OF REVIEW: This article reviews recent clinical efficacy research and economic analysis of the use of personal continuous glucose monitoring (CGM) in type 2 diabetes (T2D). RECENT FINDINGS: Studies from the past 5 years include a variety of randomized controlled trials, meta-analyses, and other studies which generally favor CGM over self-monitoring of blood glucose (SMBG) in T2D, especially among people with T2D treated with insulin. Concurrently, some studies show no significant difference, but there is no evidence of worse outcomes with CGM. CGM is frequently associated with greater reduction in HbA1c than is SMBG. HbA1c reductions tend to be greater when baseline HbA1c is higher. Reductions in hypoglycemia and hyperglycemia have also been demonstrated with CGM in people with T2D, as have comfort with, preference for, and psychosocial benefits of CGM compared to SMBG. There is a small but growing evidence base on the economics and cost-effectiveness of CGM in T2D. CGM has been clearly demonstrated to have clinical benefits in people with T2D, especially among those treated with insulin. Economic and cost-effectiveness data are more scant but are generally favorable. CGM should be an important consideration in the management of T2D, and its use is likely to increase as efficacy data accumulate further and as costs associated with CGM gradually decrease.
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Automonitorización de la Glucosa Sanguínea , Diabetes Mellitus Tipo 2 , Adulto , Glucemia , Automonitorización de la Glucosa Sanguínea/economía , Análisis Costo-Beneficio , Diabetes Mellitus Tipo 2/tratamiento farmacológico , Diabetes Mellitus Tipo 2/economía , Hemoglobina Glucada/análisis , Humanos , Resultado del TratamientoRESUMEN
AIMS: To systematically investigate the effect of interventions to overcome therapeutic inertia on glycaemic control in individuals with type 2 diabetes. MATERIALS AND METHODS: We electronically searched for randomized controlled trials or quasi-experimental studies published between January 1, 2004 and December 31, 2019 evaluating the effect of interventions on glycated haemoglobin (HbA1c) control. Characteristics of included studies and HbA1c difference between intervention and control arms (main outcome) were extracted. Interventions were grouped as: care management and patient education; nurse or certified diabetes educator (CDE); pharmacist; or physician-based. RESULTS: Thirty-six studies including 22 243 individuals were combined in nonlinear random-effects meta-regressions; the median (range) duration of intervention was 1 year (0.9 to 36 months). Compared to the control arm, HbA1c reduction ranged from: -17.7 mmol/mol (-1.62%) to -4.4 mmol/mol (-0.40%) for nurse- or CDE-based interventions; -13.1 mmol/mol (-1.20%) to 3.3 mmol/mol (0.30%) for care management and patient education interventions; -9.8 mmol/mol (-0.90%) to -6.6 mmol/mol (-0.60%) for pharmacist-based interventions; and -4.4 mmol/mol (-0.40%) to 2.8 mmol/mol (0.26%) for physician-based interventions. Across the included studies, a reduction in HbA1c was observed only during the first year (6 months: -4.2 mmol/mol, 95% confidence interval [CI] -6.2, -2.2 [-0.38%, 95% CI -0.56, -0.20]; 1 year: -1.6 mmol/mol, 95% CI -3.3, 0.1 [-0.15%, 95% CI -0.30, 0.01]) and in individuals with preintervention HbA1c >75 mmol/mol (9%). CONCLUSIONS: The most effective approaches to mitigating therapeutic inertia and improving HbA1c were those that empower nonphysician providers such as pharmacists, nurses and diabetes educators to initiate and intensify treatment independently, supported by appropriate guidelines.
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Diabetes Mellitus Tipo 2 , Atención a la Salud , Diabetes Mellitus Tipo 2/tratamiento farmacológico , Hemoglobina Glucada/análisis , Humanos , Ensayos Clínicos Controlados Aleatorios como Asunto , Tiempo de TratamientoRESUMEN
OBJECTIVE: Diabetes technology has improved the lives of people with diabetes (PWD), but there is little research on how insulin pumps and continuous glucose monitoring (CGM) affect couples' relationships. The purpose of this study was to examine how the use of diabetes technology affects couple interactions. METHODS: In a secondary data analysis, we used a multiple-method qualitative analysis, including a constant-comparison approach, to examine similarities and differences in couple interactions related to diabetes technology. PWD and their spouses were interviewed separately, using a semi-structured interview guide; the interviews primarily focused on how couples coped with type 1 diabetes. RESULTS: Participants (n = 134 couples) were using an insulin pump or CGM system. Average age was 44 ± 12.05 years for PWD and 44 ± 12.62 years for spouses. Couples' average length of relationship was 18 ± 12.50 years. Among the PWD, 54 used a pump only, 12 used CGM only, and 68 used both. Four main themes emerged: 1) diabetes technology facilitates shared diabetes management for couples, 2) diabetes technology facilitates spousal involvement in diabetes care, 3) diabetes technology is a source of relationship tension, and 4) diabetes technology causes positive/negative responses to sleep and alarms. CONCLUSION: Overall, couples perceived diabetes technology as having a positive effect on their relationship by increasing collaboration, promoting communication, and reducing diabetes burden and vigilance. Technology also was perceived to increase relationship tension, lifestyle inconveniences, and positive/negative responses regarding sleep and alarms. Involvement of spouses in diabetes technology education should be considered.
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Historically, diabetes identity has been examined at the individual level as it relates to clinical outcomes and self-management practices. Yet, identity is not experienced as an individually isolated phenomenon. The purpose of this study is twofold: (a) examine the social meaning of diabetes identity and (b) formulate a theoretical model of diabetes identity through a sociopolitical lens. Adults living with diabetes engaged in a diabetes online community (N = 20) participated in a 60-minute semi-structured interview focused on social diabetes experiences and diabetes identity. Seven themes emerged related to illness, individuation, and culture, resulting in a novel theoretical model of diabetes identity: willingness to identify, tales of the un-sick, legends of the responsible, a tradition of change-making, sense of sameness, mystification of difference, and diabetes as a unifying social category. Our study extends previous literature focused on self-management practices and compliance, resulting in a theoretical model of diabetes identity centered around social change.
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Diabetes Mellitus , Automanejo , Adulto , Humanos , Investigación Cualitativa , Cambio SocialRESUMEN
PURPOSE OF REVIEW: Diabetes is a chronic disease that, regardless of type, requires intensive, ongoing self-management. As a result, people with diabetes (PWD) often have complex environmental, social, behavioral, and informational needs, many of which are unmet in healthcare settings and systems. To help meet these needs, many PWD interact with diabetes online communities (DOCs), including platforms such as Facebook, Twitter, and blogs, to share real-life support, problems, and concerns with other PWD, offering a rich source of data on patient-reported outcomes. This article reviews recent psychosocial needs and outcomes identified by studies of DOCs and/or their users. RECENT FINDINGS: Participation in DOCs appears driven by a need for psychosocial support, unmet by providers and the healthcare system, as well as a sense of duty to provide it to others. The most common activities observed in DOCs are giving and receiving various types of support: psychosocial, technical, informational, and self-management. General and specific challenges (e.g., continuous glucose monitoring) as well as frustrations and worries associated with those challenges are commonly expressed, leading to reciprocal sharing, support, and encouragement, in a judgment-free manner, from other PWD. This leads users to feel more understood, empowered, validated, less alone, and more supported. Negative findings were reported very rarely and focused more on how other participants used social media rather than on the exchange of misplaced or dangerous information or advice. Diabetes online communities have grown from unmet needs for problem-solving and psychosocial support for living with a complex condition and from the availability of a new communications medium (i.e., social media). This has enabled communities of peers to both seek and receive support for living with diabetes, providing an important supplement to what is provided in healthcare settings and offering valuable information about what is most important to PWD and their families, with the potential to improve psychosocial care.
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Cuidadores/psicología , Diabetes Mellitus/psicología , Medios de Comunicación Sociales , Automonitorización de la Glucosa Sanguínea/métodos , Automonitorización de la Glucosa Sanguínea/psicología , Diabetes Mellitus/terapia , Humanos , Automanejo , Apoyo SocialRESUMEN
BACKGROUND: Sleep, a process that restores the body's ability to self-regulate, may be one important factor affecting self-care behaviors and blood glucose (BG) levels. The link between sleep quality, self-care behaviors, and BG levels may occur by sleep-altering daily self-regulatory failures. PURPOSE: This study examined whether the relation between sleep quality and self-care behaviors occurred through self-regulation failures and whether the relation between sleep quality and BG levels occurred through self-regulation failures and self-care behaviors sequentially. METHODS: One hundred and ninety-nine adults with type 1 diabetes (T1D) completed an online questionnaire for 14 days in which they reported sleep quality, self-regulation failures, and self-care behaviors. BG levels were gathered from glucometers. Analyses involved multilevel mediation models and focused on daily within-person and between-person variability of sleep quality. RESULTS: Better daily sleep quality was associated with higher self-care behaviors at both within-person and between-person levels, and self-regulation failures mediated the association between daily sleep quality and daily self-care behaviors at both within-person and between-person levels. Better daily sleep quality was associated with better BG levels at the within-person level and self-regulation behaviors and self-care behaviors sequentially mediated the association between daily sleep quality and daily BG levels at the within-person level. CONCLUSION: This study provides a process account of the importance of daily sleep quality of adults with T1D, as well as one potential mechanism-self-regulation-that may explain the effect of sleep quality on diabetes outcomes.
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Diabetes Mellitus Tipo 1/sangre , Diabetes Mellitus Tipo 1/terapia , Autocuidado , Autocontrol , Sueño/fisiología , Adulto , Anciano , Glucemia/metabolismo , Femenino , Humanos , Masculino , Persona de Mediana EdadRESUMEN
The purpose of this study was to investigate the concurrent and lagged effects of daily exercise on daily blood glucose level and affect among persons with type 1 diabetes (T1D). 199 persons with T1D (Mage = 46.82) completed a 14-day diary in which they reported on their engagement in moderate to vigorous exercise for 30 min and positive and negative affect. Daily blood glucose (BG) was gathered through study-provided glucometers. Multilevel modeling examined the effects of daily variability in (within-person effects) and average levels of (between-person effects) daily exercise on BG and affect. On days when persons with T1D reported they exercised moderately to vigorously for 30 min, they had lower mean BG, higher risk for low BG, lower negative affect, and higher positive affect on the same day as well as lower mean BG on the following day. Engaging in daily exercise is important in managing daily blood glucose and affect among persons with T1D, but can be complicated by hypoglycemia.
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Diabetes Mellitus Tipo 1 , Hipoglucemia , Adulto , Glucemia , Automonitorización de la Glucosa Sanguínea , Diabetes Mellitus Tipo 1/terapia , Humanos , Persona de Mediana EdadRESUMEN
BACKGROUND: Self-management of type 1 diabetes (T1D) requires numerous decisions and actions by people with T1D and their caregivers and poses many daily challenges. For those with T1D and a developmental disorder such as autism spectrum disorder (ASD), more complex challenges arise, though these remain largely unstudied. OBJECTIVE: This study aimed to better understand the barriers and facilitators of raising a child with T1D and ASD. Secondary analysis of web-based content (phase 1) and telephone interviews (phase 2) were conducted to further expand the existing knowledge on the challenges and successes faced by these families. METHODS: Phase 1 involved a qualitative analysis of publicly available online forums and blog posts by caregivers of children with both T1D and ASD. Themes from phase 1 were used to create an interview guide for further in-depth exploration via interviews. In phase 2, caregivers of children with both T1D and ASD were recruited from Penn State Health endocrinology clinics and through the web from social media posts to T1D-focused groups and sites. Interested respondents were directed to a secure web-based eligibility assessment. Information related to T1D and ASD diagnosis, contact information, and demographics were collected. On the basis of survey responses, participants were selected for a follow-up telephone interview and were asked to complete the adaptive behavior assessment system, third edition parent form to assess autism severity and upload a copy of their child's most recent hemoglobin A1c (HbA1c) result. Interviews were transcribed, imported into NVivo qualitative data management software, and analyzed to determine common themes related to barriers and facilitators of raising a child with both ASD and T1D. RESULTS: For phase 1, 398 forum posts and blog posts between 2009 and 2016 were analyzed. Common themes related to a lack of understanding by the separate ASD and T1D caregiver communities, advice on coping techniques, rules and routines, and descriptions of the health care experience. For phase 2, 12 eligible respondents were interviewed. For interviewees, the average age of the child at diagnosis with T1D and ASD was 7.92 years and 5.55 years, respectively. Average self-reported and documented HbA1c levels for children with T1D and ASD were 8.6% (70 mmol/mol) and 8.7% (72 mmol/mol), respectively. Common themes from the interviews related to increased emotional burden, frustration surrounding the amount of information they are expected to learn, and challenges in the school setting. CONCLUSIONS: Caregivers of children with both T1D and ASD face unique challenges, distinct from those faced by caregivers of individuals who have either disorder alone. Understanding these challenges may help health care providers in caring for this unique population. Referral to the diabetes online community may be a potential resource to supplement the care received by the medical community.
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Trastorno del Espectro Autista/psicología , Cuidadores/psicología , Diabetes Mellitus Tipo 1/psicología , Niño , Femenino , Humanos , Masculino , AutomanejoRESUMEN
PURPOSE: Emerging adults with type 1 diabetes (T1D) are at increased risk for poor health outcomes as they transition from paediatric to adult healthcare providers. This is in part due to the complexities of young adult life as individuals with T1D enter the workforce, leave home or start college while learning to manage the disease on their own. We sought to identify the barriers and facilitators adolescents face during their emerging adult years with T1D. METHODS: Young adults, aged 24-35, who lived with T1D during their adolescent years were recruited online to complete a survey regarding their experience with care transition. Categorical data were analysed using descriptive statistics. A thematic analysis, guided by the Framework for Emerging Adults with T1D, was used to explore the free-text data. RESULTS: In total, 25 adults (84% female) with mean age of 28 ± 3.2 years participated. Themes that arose from the analysis of the paediatric to adult care transition experiences included (1) importance of support from key players, (2) challenges navigating the healthcare system, (3) mental health needs of emerging adults with T1D, (4) managing day-to-day life with T1D and (5) early independence to ease transition. CONCLUSION: Individuals with T1D face a variety of challenges as they transition from paediatric to adult care providers. A proactive approach in educating adolescents is needed.
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Diabetes Mellitus Tipo 1/psicología , Diabetes Mellitus Tipo 1/terapia , Transición a la Atención de Adultos , Adolescente , Adulto , Factores de Edad , Femenino , Humanos , Masculino , Satisfacción del Paciente , Investigación Cualitativa , Factores Socioeconómicos , Encuestas y Cuestionarios , Adulto JovenRESUMEN
In a study of 199 couples in which one person had type 1 diabetes, we examined how patient appraisal of the diabetes as shared versus individual was associated with collaborative, supportive and unsupportive behavior and whether patient shared illness appraisal was most beneficial for health when it occurred in the context of supportive behavior. We assessed illness appraisal among patients with type 1 diabetes and their partners and had patients complete relationship and health measures. Results showed partners were more likely than patients to hold shared illness appraisals. Patients' shared appraisals were associated with more collaborative and instrumental support, more emotional support, less protective buffering, and more overprotective behavior. When patients and partners were consistent in their shared appraisals, support was highest. Regression analysis showed collaborative and instrumental support, as well as emotional support, was related to better psychological and physical health when patients held shared compared to individual illness appraisals.
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Diabetes Mellitus Tipo 1/psicología , Estado de Salud , Calidad de Vida/psicología , Percepción Social , Esposos/psicología , Adaptación Psicológica , Adulto , Femenino , Humanos , Masculino , Persona de Mediana Edad , Conducta Social , Apoyo SocialRESUMEN
OBJECTIVE: The purpose of this study was to understand perceptions of diabetes management responsibilities and the impact of diabetes on day-to-day activities in older adulthood for individuals with type 1 diabetes and their spouses. DESIGN AND METHODS: This qualitative content analysis used a constant-compare approach to analyze individual interviews conducted with older adults and their spouses. People with type 1 diabetes (PWD) and their spouses were interviewed regarding how they coped or dealt with diabetes, what activities they carried out or avoided because of diabetes, and how they appraised diabetes as an individual or shared problem. RESULTS: Participants (n = 52) included 26 older adults with diabetes (mean age 69 years, SD 2.56 years; 38.5% female) and their spouses (mean age 68 years, SD 5.11 years; 61.5% female). Half of the PWD (50%) and the majority of spouses (76.9%) appraised diabetes as a shared issue. Five themes emerged from the interview data: 1) Perceptions pf PWD of spouse involvement in diabetes care, 2) PWD underestimated the impact of diabetes on their spouse's daily lives, 3) gendered nature of spouses supporting diabetes management, 4) evolution of diabetes and the relationship across developmental time, and 5) differences in diabetes management among couples. CONCLUSION: Older adults with type 1 diabetes and their spouses have different perspectives regarding diabetes support and responsibility and may not always realize what support is being provided or needed to optimize effective diabetes management. Advancing age with or without diabetes complications may necessitate that spouses provide diabetes support. Diabetes management training for spouses would likely be helpful.
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BACKGROUND: Emerging adults aged 18-30 years face challenges during life transitions, with an added burden of navigating the health care system and additional costs associated with diabetes. This stress is compounded by overall low levels of health insurance literacy in this population, as people may not know about available financial and health care resources to minimize suboptimal diabetes outcomes. This study aimed to tailor a financial and health insurance toolkit to emerging adults with type 1 diabetes, including racially, ethnically diverse, and Medicaid-insured individuals, through community-based participatory action research. METHODS: An academic research team and community members from a national organization held six online community advisory board (CAB) content-creation meetings to understand how to tailor a financial and health insurance Toolkit. The CAB was comprised of six racially and insurance-diverse emerging adults with type 1 diabetes and four content experts (clinical, financial, and insurance). Six 60-minute online CAB meetings were held via University Hospitals (UH)-encrypted Zoom over five months. Pre-reading materials were emailed to CAB members before the meetings. A moderator established the purpose of each meeting and briefly discussed meeting rules before each meeting commenced. During the meetings, the moderator guided the discussions and provided the CAB members opportunities to respond and build on one another's feedback. A deductive thematic qualitative analysis was utilized. Three researchers independently coded the cross-referenced and de-identified CAB meeting transcripts and then convened to reach a group consensus. Two CAB members performed member-checking. RESULTS: The following key themes emerged to tailor the Toolkit: ensuring that content covers empowerment and self-advocacy, including genuine stories and multimedia visuals for aesthetics, addressing clinician bias, acknowledging racial and ethnic disparities in care, incorporating cultural representation, and demystifying Medicaid stigma. CONCLUSIONS: By successfully partnering with the CAB and a community organization through a community-based participatory action research approach, we will develop a financial and health insurance Toolkit tailored to the needs of racially and ethnically diverse and Medicaid-insured emerging adults with type 1 diabetes.
AIM OF THE RESEARCH: This study aims to tailor a financial and health insurance Toolkit to emerging adults, ages 1830, with type 1 diabetes. Including the insight from racially and ethnically diverse and Medicaid-insured individuals in developing the Toolkit is essential. BACKGROUND TO THE RESEARCH: Emerging adults with type 1 diabetes have stressful challenges such as navigating the healthcare system, the costs of diabetes, and general diabetes self-management. This stress is worsened by low levels of health insurance literacy and leads to suboptimal diabetes outcomes. This issue affects many individuals but dramatically impacts those who are racially and ethnically diverse or Medicaid-insured. DESIGN AND METHODS USED: Six online content-creation meetings were held to understand the Toolkit content needs and preferences. We analyzed the meeting transcripts to uncover common themes. Patient and public involvement: An academic research team, a national organization (The Diabetes Link), and a Community Advisory Board (CAB) partnered together. The CAB members were racially and insurance-diverse emerging adults with type 1 diabetes and content (financial, insurance, clinical diabetes) experts. We will continue to collaborate with the CAB members to develop a research protocol to test the effects of the Toolkit. DISSEMINATION: The research findings will be shared with young adult type 1 diabetes stakeholders, healthcare providers, and community and professional organizations. Dissemination strategies will include publications, community and scientific conference presentations, community events, and social media resources and content. The finalized Toolkit will be publicly available on the Diabetes Link Resource Hub.
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Continuous glucose monitors (CGMs) improve glycemic outcomes and quality of life for many people with diabetes. Research and clinical practice efforts have focused on CGM initiation and uptake. There is limited understanding of how to sustain CGM use to realize these benefits and limited consideration for different reasons/goals for CGM use. Therefore, we apply the Information-Motivation-Behavioral Skills (IMB) model as an organizing framework to advance understanding of CGM use as a complex, ongoing self-management behavior. We present a person-centered, dynamic perspective with the central thesis that IMB predictors of optimal CGM use vary based on the CGM use goal of the person with diabetes. This reframe emphasizes the importance of identifying and articulating each person's goal for CGM use to inform education and support.