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1.
Diabet Med ; 40(8): e15120, 2023 Aug.
Article in English | MEDLINE | ID: mdl-37083018

ABSTRACT

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.


Subject(s)
Diabetes Mellitus, Type 1 , Hypoglycemia , Child , Child, Preschool , Humans , Blood Glucose , Blood Glucose Self-Monitoring , Parents/psychology
2.
Curr Diab Rep ; 22(7): 291-299, 2022 07.
Article in English | MEDLINE | ID: mdl-35522355

ABSTRACT

PURPOSE OF REVIEW: Diabetes technology (insulin pumps, continuous glucose monitoring, automated insulin delivery systems) has advanced significantly and provides benefits to the user. This article reviews the current barriers to diabetes device adoption and sustained use, and outlines the known and potential facilitators for increasing and sustaining device adoption. RECENT FINDINGS: Barriers to diabetes device adoption continue to exist at the system-, provider-, and individual-level. Known facilitators to promote sustained adoption include consistent insurance coverage, support for providers and clinics, structured education and support for technology users, and device user access to support as needed (e.g., through online resources). Systemic barriers to diabetes device adoption persist while growing evidence demonstrates the increasing benefits of newest devices and systems. There are ongoing efforts to develop evidence-based structured education programs to support device adoption and sustained use.


Subject(s)
Diabetes Mellitus, Type 1 , Insulins , Blood Glucose , Blood Glucose Self-Monitoring , Diabetes Mellitus, Type 1/drug therapy , Humans , Insulin Infusion Systems , Insulins/therapeutic use
3.
Pediatr Diabetes ; 23(6): 792-798, 2022 09.
Article in English | MEDLINE | ID: mdl-35446449

ABSTRACT

BACKGROUND: Despite potential glycemic benefits of continuous glucose monitor (CGM) use in young children with type 1 diabetes, psychosocial and behavioral challenges may interfere with sustained use. We developed a 5-session family behavioral intervention (FBI) to support CGM use. OBJECTIVE: We report on the multi-step development of the FBI, training interventionists, implementation in a 14-site clinical trial, and participant satisfaction. METHODS: A multidisciplinary team created the FBI based on mixed-methods (i.e., survey data, qualitative research) preliminary work with parents of young children. Investigators trained non-physician staff to deliver the 5 sessions per an intervention manual. Trial participants received the FBI either during the first (FBI group, n = 50) or second 6-months (Crossover group, n = 44) of the 1-year trial. Investigators listened to session recordings to rate intervention fidelity, and participants rated satisfaction with the FBI. RESULTS: The complete 5-session FBI was delivered to 89% of participants, in-person (73%) or by telephone (23%). Sessions lasted 23 min on average, and fidelity was high across sessions. Over 80% of participants rated very high satisfaction with all aspects of the FBI and offered few recommendations for improvement. CONCLUSIONS: Having been developed based on experiences and input of families of young children with type 1 diabetes, the FBI represented a novel behavioral approach to enhance sustained CGM use during a challenging developmental period. Evidence of strong feasibility and acceptability supports its potential for implementation in research and clinical care. As diabetes technologies evolve, the FBI may continue to be refined to address parents' most relevant concerns.


Subject(s)
Diabetes Mellitus, Type 1 , Behavior Therapy , Blood Glucose , Child , Child, Preschool , Diabetes Mellitus, Type 1/psychology , Diabetes Mellitus, Type 1/therapy , Humans , Parents/psychology , Surveys and Questionnaires
4.
Diabet Med ; 38(10): e14492, 2021 10.
Article in English | MEDLINE | ID: mdl-33290599

ABSTRACT

AIMS: Participant-driven solutions may help youth and families better engage and maintain use of diabetes technologies. We explored innovative features and functionalities of an ideal artificial pancreas (AP) system suggested by youth with type 1 diabetes and parents. METHODS: Semi-structured interviews were conducted with 39 youth, ages 10-25 years, and 44 parents. Interviews were recorded, transcribed and coded using thematic analysis. RESULTS: Youth (72% female, 82% non-Hispanic white) were (M ± SD) ages 17.0 ± 4.7 years, with diabetes for 9.4 ± 4.9 years, and HbA1c of 68 ± 11 mmol/mol (8.4 ± 1.1%); 79% were pump-treated and 82% were continuous glucose monitor users. Of parents, 91% were mothers and 86% were non-Hispanic white, with a child 10.6 ± 4.5 years old. Youth and parents suggested a variety of innovative features and functionalities for an ideal AP system related to (1) enhancing the appeal of user interface, (2) increasing automation of new glucose management functionalities, and (3) innovative and commercial add-ons for greater convenience. Youth and parents offered many similar suggestions, including integration of ketone testing, voice activation, and location-tracking into the system. Youth seemed more driven by increasing convenience and normalcy while parents expressed more concerns with safety. CONCLUSIONS: Youth and parents expressed creative solutions for an ideal AP system to increase ease of use, enhance normalcy, and reduce burden of management. Designers of AP systems will likely benefit from incorporating the desired preferences by end users to optimize acceptance and usability by young persons with diabetes.


Subject(s)
Diabetes Mellitus, Type 1/drug therapy , Diabetes Mellitus, Type 1/psychology , Equipment Design/psychology , Insulin Infusion Systems/psychology , Insulin/administration & dosage , Pancreas, Artificial/psychology , Parents/psychology , Adolescent , Adult , Age Factors , Child , Female , Humans , Interviews as Topic , Male , Middle Aged , Patient Acceptance of Health Care/psychology , Patient Preference , Young Adult
5.
Pediatr Diabetes ; 22(7): 1063-1070, 2021 11.
Article in English | MEDLINE | ID: mdl-34324772

ABSTRACT

BACKGROUND: As new diabetes technologies improve to better manage glucose levels, users' priorities for future technologies may shift to prioritize burden reduction and ease of use. We used qualitative methods to explore youth and parent desired features of an "ideal" artificial pancreas (AP) system. METHODS: We conducted semi-structured interviews with 39 youth, ages 10-25 years, and 44 parents. Interviews were audio-recorded, transcribed, and coded using thematic analysis. RESULTS: Youth (79% female, 82% non-Hispanic white) were (M ± SD) ages 17.0 ± 4.7 years, with diabetes for 9.4 ± 4.9 years, and HbA1c of 8.4 ± 1.1%; 79% were pump-treated and 82% used CGM. Of parents, 91% were mothers and 86% were non-Hispanic white. Participants suggested various ways in which an ideal AP system could reduce physical and emotional burdens of diabetes. Physical burdens could be reduced by lessening user responsibilities to manage glucose for food and exercise, and wear or carry devices. Emotional burden could be reduced by mitigating negative emotional reactions to sound and frequency of alerts, while increasing feelings of normalcy. Youth and parents differed in their suggestions to reduce emotional burden. Participants suggested features that would improve glycemia, but nearly always in the context of how the feature would directly reduce their diabetes-specific burden. CONCLUSIONS: Although participants expressed interest in improving glucose levels, the pervasive desire among suggested features of an ideal AP system was to minimize the burden of diabetes. Understanding and addressing users' priorities to reduce physical and emotional burden will be necessary to enhance uptake and maintain use of future AP systems.


Subject(s)
Cost of Illness , Diabetes Mellitus, Type 1/drug therapy , Diabetes Mellitus, Type 1/psychology , Pancreas, Artificial , Parents , Patient Preference/psychology , Adolescent , Child , Emotions , Female , Glycated Hemoglobin/analysis , Glycemic Control , Humans , Hypoglycemic Agents/administration & dosage , Insulin/administration & dosage , Insulin Infusion Systems , Male , Patient Preference/statistics & numerical data , Quality of Life , Young Adult
6.
Diabetes Spectr ; 34(4): 328-335, 2021 Nov.
Article in English | MEDLINE | ID: mdl-34866865

ABSTRACT

Young adults (YAs) are often faced with many new transitions and major milestones specific to their life stage. For YAs with diabetes, it can be particularly difficult to balance diabetes management with the age-typical demands of young adulthood. Clinicians can play an important role in helping YAs navigate major life changes and find balance in the competing demands of young adulthood, while protecting their health and well-being.

7.
Pediatr Diabetes ; 21(1): 53-60, 2020 02.
Article in English | MEDLINE | ID: mdl-31603620

ABSTRACT

BACKGROUND: The demands of diabetes care can place substantial burden on youth with type 1 diabetes (T1D), who must manage their treatment in conjunction with the developmentally typical tasks of adolescence. How diabetes affects the normative task of identity development deserves further exploration. METHODS: A sample of 83 participants (ages 13-21) completed a qualitative interview about life with diabetes and a battery of validated psychosocial measures. Individual interviews were analyzed using content analysis to create criteria for whether a teen had incorporated their T1D in relation to their identity. Convergent validity was assessed by comparing identity groups on various validated measures of psychosocial characteristics and health-related outcomes. Analysis of covariances (ANCOVAs) were used to determine whether identity status had a significant relationship to health outcomes. RESULTS: Results indicated that youth who were categorized as incorporating their T1D into their identities demonstrated significantly greater perceived social competency (P = .014), greater diabetes-specific self-esteem (P < .001), better self-care (P = .002), and more life satisfaction (P = .001) than those who had not incorporated T1D. Incorporation was also associated with better glycemic control (P = .003). Identity remained significantly associated with the above psychosocial and health-related outcomes even when controlling for covariates of gender and method of insulin delivery (Ps < .01). CONCLUSIONS: Successful incorporation of diabetes is associated with better biomedical and psychosocial outcomes in teens with T1D. Further research is warranted to assess influences on identity as well as how to encourage and support incorporation in this at-risk population.


Subject(s)
Diabetes Mellitus, Type 1/ethnology , Diabetes Mellitus, Type 1/therapy , Ethnicity/psychology , Minority Groups/psychology , Self Care , Treatment Adherence and Compliance/ethnology , Adolescent , Diabetes Mellitus, Type 1/diagnosis , Ethnicity/statistics & numerical data , Female , Humans , Hypoglycemic Agents/therapeutic use , Insulin/therapeutic use , Male , Minority Groups/statistics & numerical data , Quality of Life , Self Concept , Social Support , Surveys and Questionnaires , White People/psychology , White People/statistics & numerical data , Young Adult
8.
Pediatr Diabetes ; 21(1): 69-76, 2020 02.
Article in English | MEDLINE | ID: mdl-31589350

ABSTRACT

OBJECTIVE: Patient-reported outcomes have received increased attention as treatment outcomes and indicators of wellbeing. A1c has been criticized as lacking patient-centered relevance because individuals are often unaware of their A1c, and studies also often fail to show a benefit of intensive control on quality of life. The goal of the present study was to examine self-rated health (SRH) in relation to diabetes self-care behaviors, socioeconomic factors, treatment regimen characteristics, and glycemic control among predominately Hispanic and African American adolescents with type 1 diabetes (T1D). METHODS: Adolescents with T1D (N = 84) were recruited for a cross-sectional study evaluating psychosocial factors and identity development. SRH, self-care behaviors, treatment regimen, and demographic variables were collected through self-report while glycemic control (A1c) was determined through chart review. RESULTS: Participants were predominantly racial and ethnic minorities (48% Hispanic, 27% African American; 52% female, M age 15.9, M diabetes duration 6.8, M A1c 10% [86 mmol/mol]). Significant bivariate relationships emerged between SRH and sex, A1c, self-care behavior, and insulin delivery method. Covariate-adjusted regression models showed only A1c was significantly and independently related to SRH. Mediation analyses illustrated a significant indirect effect for A1c between self-care and SRH. CONCLUSION: These findings suggest glycemic control is associated with self-ratings of health among ethnically diverse adolescents with T1D. SRH appears to be an appropriate patient-reported outcome that is sensitive to glycemic control in this population.


Subject(s)
Black or African American/psychology , Diabetes Mellitus, Type 1/ethnology , Diabetes Mellitus, Type 1/therapy , Glycemic Control , Hispanic or Latino/psychology , Self Care , Adolescent , Black or African American/statistics & numerical data , Cross-Sectional Studies , Diabetes Mellitus, Type 1/diagnosis , Female , Glycated Hemoglobin/metabolism , Health Behavior , Hispanic or Latino/statistics & numerical data , Humans , Hypoglycemic Agents/therapeutic use , Insulin/therapeutic use , Male , Self Report , Socioeconomic Factors , Young Adult
9.
Pediatr Diabetes ; 21(2): 377-383, 2020 03.
Article in English | MEDLINE | ID: mdl-31808586

ABSTRACT

BACKGROUND: Across all age groups, management of type 1 diabetes (T1D) places substantial responsibility and emotional burden upon families. This study explored parent perceptions of the burdens of caring for very young children with T1D. METHODS: Semi-structured qualitative interviews were conducted with parents (85% mothers) of 79 children with T1D, aged 1 to <8 years old, from four diverse pediatric diabetes clinical centers. Interviews were transcribed, coded, and analyzed using hybrid thematic analysis to derive central themes. RESULTS: Youth (77% White) had T1D for ≥6 months: age (M ± SD) 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, and A1c 63 ± 10 mmol/mol (7.9 ± 0.9%); 66% used an insulin pump and 61% used CGM. Three major themes emerged related to diabetes burdens: (a) the emotional burden of diabetes on themselves and their children, (b) the burden of finding, training, and trusting effective secondary caregivers to manage the child's diabetes, and (c) suggestions for how more comprehensive, personalized diabetes education from healthcare providers for parents and secondary caregivers could help reduce parent burden and worry. CONCLUSIONS: In families with very young children with T1D, parental perceptions of the burden of managing diabetes are common and could be mitigated by tailored education programs that increase parent knowledge, bolster parents' confidence in themselves, and increase trust in their secondary caregivers to manage diabetes. Reduced parental burden and increased caregiver knowledge may positively impact child's glycemic control, as well as improve parent and child quality of life.


Subject(s)
Cost of Illness , Diabetes Mellitus, Type 1/psychology , Parents/psychology , Child , Child, Preschool , Diabetes Mellitus, Type 1/therapy , Female , Humans , Hypoglycemic Agents/administration & dosage , Insulin/administration & dosage , Interviews as Topic , Male , Parenting , Psychological Distress , Qualitative Research
10.
Pediatr Diabetes ; 19(1): 85-91, 2018 02.
Article in English | MEDLINE | ID: mdl-28425183

ABSTRACT

AIMS: This cross-sectional study assessed the type of major life events occurring in a contemporary sample of teens with type 1 diabetes and the association between event frequency and demographic, diabetes management, and psychosocial characteristics. METHODS: Parents of 178 teens completed the Life Events Checklist to report major events teens had experienced in the last year: 42% experienced 0 to 1 event (n = 75), 32% experienced 2 to 3 events (n = 57), and 26% experienced 4+ events (n = 46). Teens and parents completed validated measures of treatment adherence, diabetes-specific self-efficacy, quality of life, and diabetes-specific family conflict. Parent-youth interview and chart review provided demographics and diabetes management data. RESULTS: Mean number of events/teen was 2.6 ± 2.7 (range = 0-15). The most common events were "Hospitalization of a family member" (24%), "Getting a bad report card" (20%), "Serious arguments between parents" (19%), and "Serious illness/injury in a family member" (19%). Compared with teens experiencing 0 to 1 event, teens experiencing 4+ events were less likely to have married parents (P = .01) and a parent with a college degree (P = .006). Teens with 4+ events had significantly poorer adherence (P = .002 teen, P = .02 parent), lower self-efficacy (P = .03 teen, P < .0001 parent), poorer quality of life (P < .0001 teen, P < .0001 parent), and more conflict (P = .006 teen, P = .02 parent) than teens with fewer events. In a multivariate model (R 2 = 0.21, P < .0001) controlling for demographic and diabetes management characteristics, fewer events was associated with lower A1c (P = .0009). CONCLUSIONS: Occurrence of more major life events was associated with poorer diabetes care and A1c and more negative psychosocial qualities in teens with type 1 diabetes.


Subject(s)
Diabetes Mellitus, Type 1/psychology , Life Change Events , Medication Adherence/psychology , Adolescent , Diabetes Mellitus, Type 1/drug therapy , Female , Humans , Insulin Infusion Systems , Longitudinal Studies , Male , Medication Adherence/statistics & numerical data , Parents
11.
Qual Health Res ; 26(5): 672-84, 2016 Apr.
Article in English | MEDLINE | ID: mdl-26893304

ABSTRACT

This study explored the incorporation of type 1 diabetes mellitus (T1DM) into self-identity among adolescents. Guided interviews explored 40 adolescents' views of T1DM in relation to their sense of self and relationships with others. Responses were analyzed using thematic analysis. Results revealed that the entire sample described T1DM as a significant burden; many described how T1DM made them feel less "normal." Adolescents described both positive and negative aspects of self-management in social relationships, though most reported benefits in sharing T1DM with friends. Females were more likely to share information about T1DM and to describe positive changes in self-perception as a result of T1DM. The psychosocial processes related to integration of T1DM into self-identity described in these qualitative data provide hypothesis-generating findings that can guide future quantitative research examining incorporation of T1DM into adolescent self-identity in relation to measures of self-esteem, peer orientation, self-management, and glycemic control.


Subject(s)
Diabetes Mellitus, Type 1/psychology , Social Identification , Adolescent , Female , Humans , Interpersonal Relations , Male , Peer Group , Qualitative Research , Self Care/psychology , Self Concept , Sex Factors , Social Support , Young Adult
12.
J Diabetes Sci Technol ; : 19322968241275963, 2024 Aug 30.
Article in English | MEDLINE | ID: mdl-39212371

ABSTRACT

Advances in diabetes technologies have enabled automated insulin delivery (AID) systems, which have demonstrated benefits to glycemia, psychosocial outcomes, and quality of life for people with type 1 diabetes (T1D). Despite the many demonstrated benefits, AID systems come with their own unique challenges: continued user attention and effort, barriers to equitable access, personal costs vs benefits, and integration of the system into daily life. The purpose of this narrative review is to identify challenges and opportunities for supporting uptake and onboarding of AID systems to ultimately support sustained AID use. Setting realistic expectations, providing comprehensive training, developing willingness to adopt new treatments and workflows, upskilling of diabetes team members, and increasing flexibility of care to tailor care to individual needs, preferences, lifestyle, and personal goals will be most effective in facilitating effective, widespread, person-centered implementation of AID systems.

13.
Arch Clin Neuropsychol ; 39(7): 800-808, 2024 Oct 25.
Article in English | MEDLINE | ID: mdl-38520386

ABSTRACT

OBJECTIVE: Compensatory strategies can improve performance of instrumental activities of daily living in people with cognitive impairment. This study investigated patient interest in compensatory strategy interventions and preference for various intervention formats. METHODS: Semi-structured qualitative interviews with 38 older adults with cognitive impairment queried motivation to improve strategy use and interest in intervention formats/delivery methods. Two coders used thematic analysis to determine rates of interest in each intervention type and explore patient-reported barriers and facilitators to motivation and intervention models. RESULTS: Most of the samples reported motivation to enhance compensatory strategy use. Degree of motivation was driven by current experiences with strategy use, perceived benefit of potential changes, intrinsic desire to improve life and self, and current perceived need. The vast majority were interested in hour-long, multi-session, instructor-led interventions. Just over half of the sample was interested in a self-directed virtual program, and just under half was interested in involving family/friends. Facilitators and barriers to interest in intervention formats and delivery methods varied based on participants' previous experiences, preferred learning style, content, and time commitment of the intervention, and perceived current need for intervention. One-fifth of the sample expressed no interest in any intervention type, though they expressed openness to assistance in the future as needed. CONCLUSIONS: Older adults with cognitive impairment are generally motivated to enhance their compensatory strategy use. Clinicians/researchers designing compensatory strategy interventions should consider instructor-led formats, present individualized benefits of interventions, and demonstrate the benefits of both preventative and remedial intervention to optimize patient engagement.


Subject(s)
Activities of Daily Living , Cognitive Dysfunction , Motivation , Humans , Male , Female , Aged , Motivation/physiology , Aged, 80 and over , Middle Aged , Qualitative Research
14.
Endocr Connect ; 12(10)2023 Oct 01.
Article in English | MEDLINE | ID: mdl-37522857

ABSTRACT

Diabetes technology continues to advance, with more individuals with type 1 diabetes (T1D) adopting insulin pumps, continuous glucose monitoring (CGM), and automated insulin delivery (AID) systems that integrate real-time glucose data with an algorithm to assist with insulin dosing decisions. These technologies are linked with benefits to glycemic outcomes (e.g. increased time in target range), diabetes management behaviors, and quality of life. However, current devices and systems are not without barriers and hassles for the user. The intent of this review is to describe the personal challenges and reactions that users experience when interacting with current diabetes technologies, which can affect their acceptance and motivation to engage with their devices. This review will discuss user experiences and strategies to address three main areas: (i) the emotional burden of utilizing a wearable device; (ii) the perceived and experienced negative social consequences of device use; and (iii) the practical challenges of wearing devices.

15.
Can J Diabetes ; 47(1): 66-72, 2023 Feb.
Article in English | MEDLINE | ID: mdl-36184368

ABSTRACT

OBJECTIVES: Teens and young adults with type 1 diabetes (T1D) often demonstrate difficulty with diabetes management, as they struggle to navigate the impact of T1D on their identities---their self-concepts, bodies, social networks, life experiences and desired futures. Positively incorporating T1D into identity may benefit biomedical and psychosocial outcomes. We aimed to validate and assess psychometric properties of the Accepting Diabetes and Personal Treatment (ADAPT) survey, a new measure of incorporation of T1D into one's identity. METHODS: This cross-sectional study included 165 teens and young adults (13 to 25 years of age) with T1D (46% male, 87% Caucasian, 72% pump users, 67% on continuous glucose monitoring [CGM], age 18.5±3.2 years, diabetes duration 10.2±5.0 years, glycated hemoglobin [A1C] 8.5±1.3% [69±14 mmol/mol]). A1C was collected from medical records; participants completed the ADAPT survey and validated measures of fear of hypoglycemia, diabetes distress and quality of life. Internal consistency, reliability, validity and underlying factor structure were assessed. RESULTS: The 18-item ADAPT survey demonstrated excellent internal consistency (alpha=0.90) as well as criterion and construct validity. Greater incorporation of diabetes was associated with male sex, pump use, CGM use, lower A1C, less fear of hypoglycemia, less diabetes distress and improved quality of life (p<0.01 for all). Factor analysis identified 3 main contributors to incorporation: Stigma Management, Adjustment to Perceived Interference and Benefit-finding. CONCLUSIONS: The ADAPT survey is a valid and reliable measure of incorporation in teens and young adults with T1D that highlights the importance of identity in health outcomes. Diabetes device use and factors of incorporation (Stigma Management, Adjustment to Perceived Interference and Benefit-finding) offer targets for clinical intervention.


Subject(s)
Diabetes Mellitus, Type 1 , Hypoglycemia , Self Concept , Adolescent , Female , Humans , Male , Young Adult , Blood Glucose/metabolism , Blood Glucose Self-Monitoring/psychology , Cross-Sectional Studies , Diabetes Mellitus, Type 1/therapy , Diabetes Mellitus, Type 1/psychology , Glycated Hemoglobin , Quality of Life , Reproducibility of Results
16.
Diabetes Res Clin Pract ; 162: 108110, 2020 Apr.
Article in English | MEDLINE | ID: mdl-32194216

ABSTRACT

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.


Subject(s)
Diabetes Mellitus, Type 1/therapy , Psychometrics/methods , Self Care/methods , Adolescent , Female , Humans , Male , Reproducibility of Results , Self Report , Surveys and Questionnaires
17.
Diabetes Technol Ther ; 22(9): 697-700, 2020 09.
Article in English | MEDLINE | ID: mdl-32077755

ABSTRACT

There are multiple information sources available to assist families in learning about rapidly advancing diabetes technologies as care options for their children. This study explored where and from whom families of young children with type 1 diabetes get information about diabetes technologies and the valence (positive vs. negative) of that information. Semi-structured interviews were conducted with parents (86% mothers) of 79 youth <8 years old with type 1 diabetes for ≥6 months, ([mean ± standard deviation] age 5.2 ± 1.5 years, diabetes duration 2.4 ± 1.3 years, 77% white, A1c 63 ± 10 mmol/mol [7.9 ± 0.9%], 66% pump-treated, 58% using continuous glucose monitors [CGMs]). Interviews were transcribed and underwent content analysis to derive central themes. Most parents reported learning about new technologies from three direct sources: diabetes care providers, people with diabetes, and caregivers of children with diabetes. Parents also cited three indirect sources of information: online forums, publications, and diabetes-specific conferences. Parents reported hearing primarily positive things about technologies. Families not using pump and/or CGM noted reluctance to use technology due to family-specific concerns (e.g., cost, child's unwillingness to wear device) rather than information from outside sources. In this subset of parents, many still expressed willingness to initiate use once family-specific concerns were resolved. Parents of young children received largely positive information about diabetes technologies, primarily from health care providers and others familiar with using devices personally or for their children. To maximize diabetes technology use in young children, it is incumbent upon providers to ensure families receive balanced realistic information about benefits and barriers.


Subject(s)
Diabetes Mellitus, Type 1 , Insulin Infusion Systems , Technology , Child , Child, Preschool , Decision Making , Diabetes Mellitus, Type 1/drug therapy , Female , Humans , Hypoglycemic Agents/therapeutic use , Male , Parents
18.
Diabetes Technol Ther ; 21(9): 493-498, 2019 09.
Article in English | MEDLINE | ID: mdl-31287721

ABSTRACT

Background: Continuous glucose monitoring (CGM) has potential to address challenges of type 1 diabetes (T1D) management for young children. CGM use is increasing, yet remains underutilized. Characterizing parents' experiences with CGM can inform clinical strategies to help parents make decisions about diabetes management, overcome obstacles to initiating and sustaining CGM use, and maximize benefits of CGM use in their children's diabetes care. Methods: Transcripts from semistructured qualitative interviews with 55 parents of children aged 1 to <8 years, with T1D duration ≥6 months, and whose child currently or previously used CGM were coded and analyzed to derive themes about their experiences with CGM. Results: Participants were 88% mothers and the mean child age was 5.0 ± 1.5 years. Parents described benefits of CGM use: decreased worry about glucose excursions, improved sleep, increased sense of safety with children who cannot recognize or express symptoms of hypo- or hyperglycemia, and greater comfort with other caregivers, especially using remote monitoring functionality when away from children. Challenges included painful insertions, wearing multiple devices on small bodies, disruptive alerts, data gaps due to lost signals, skin/adhesive problems, and difficulty interpreting the amount of information generated by CGM. For some, the challenges outweighed potential benefits and they stopped CGM use. Conclusions: CGM may address unique challenges of T1D in young children and increase parental comfort with diabetes management, yet there are multiple barriers to initiating or maintaining CGM use. Education and behavioral support to address these benefits and barriers may equip caregivers with skills to address challenges of CGM use.


Subject(s)
Anxiety/psychology , Blood Glucose Self-Monitoring/psychology , Diabetes Mellitus, Type 1/psychology , Parents/psychology , Patient Acceptance of Health Care/psychology , Adult , Child , Child, Preschool , Diabetes Mellitus, Type 1/complications , Diabetes Mellitus, Type 1/drug therapy , Female , Humans , Hyperglycemia/prevention & control , Hyperglycemia/psychology , Hypoglycemia/prevention & control , Hypoglycemia/psychology , Infant , Male , Qualitative Research
20.
Diabetes Technol Ther ; 19(6): 363-369, 2017 06.
Article in English | MEDLINE | ID: mdl-28581817

ABSTRACT

BACKGROUND: Managing type 1 diabetes (T1D) in young children presents challenges to families and caregivers. Pump therapy may reduce challenges and benefit glycemic control. However, pump use is not universal; parent-reported reasons for lack of uptake are not well described. METHODS: Parents of children <7, with T1D for ≥1 year, in the T1D Exchange registry completed surveys capturing demographic and clinical characteristics, as well as barriers to pump use. Data from pump users were compared to nonusers, and barriers were analyzed among parents who received pump recommendations, but decided against uptake. RESULTS: Young children (N = 515) from 41 sites were identified (mean age 5.2 ± 1.2 years, diabetes duration 2.4 ± 1.0 years, 46% female, and 78% Non-Hispanic White). Overall glycemic control was suboptimal (HbA1c 8.1% ± 1.0%). The majority were pump users (64%, n = 331; nonusers 36%, n = 184). Pump users had longer T1D duration (2.5 ± 1.1 years vs. 2.2 ± 1.0 years, P = 0.001), were more likely to have annual household incomes ≥$75,000 (62% vs. 36%, P < 0.001), have a parent with college education or higher (70% vs. 45%, P < 0.001), perform more frequent blood glucose monitoring (7.5 ± 2.5 times/day vs. 6.5 ± 2.3 times/day, P < 0.001), and use continuous glucose monitoring (CGM) (45% vs. 13%, P < 0.001). Only income, education, frequency of blood glucose monitoring, and CGM use remained significant in a multivariate model including age, sex, ethnicity, and duration of diabetes. Barriers to pump uptake included concerns with physical interference, therapeutic effectiveness, and to a lesser extent, financial burden. CONCLUSIONS: These findings provide an opportunity to address potentially modifiable parent-reported barriers to pump uptake through education and behavioral intervention.


Subject(s)
Diabetes Mellitus, Type 1/drug therapy , Hypoglycemic Agents/administration & dosage , Insulin Infusion Systems , Insulin/administration & dosage , Patient Acceptance of Health Care , Blood Glucose/analysis , Blood Glucose Self-Monitoring , Child , Child, Preschool , Cohort Studies , Cross-Sectional Studies , Diabetes Mellitus, Type 1/blood , Female , Glycated Hemoglobin/analysis , Health Care Surveys , Humans , Hypoglycemic Agents/adverse effects , Hypoglycemic Agents/therapeutic use , Insulin/adverse effects , Insulin/therapeutic use , Insulin Infusion Systems/adverse effects , Male , Monitoring, Ambulatory , Parents , Patient Preference , Registries , Socioeconomic Factors , United States
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