Teen and parental perspectives regarding transition of care in type 1 diabetes

Holtz, Bree; Mitchell, Katharine M; Holmstrom, Amanda J.; Cotten, Shelia R.; Hershey, Denise Soltow; Dunneback, Julie K; Vega, Jose Jimenez; Wood, Mark

doi:10.1016/j.childyouth.2020.104800

Cited by 12 publications

(13 citation statements)

References 37 publications

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“…Findings provide important information for supporting parents to nurture effective communication throughout adolescence, including, understanding how timing and one's own emotions may impact communication; nurturing a positive relationship with adolescents; and employing strategies to maintain positive communication. This reflects other evidence which highlights a positive impact on adolescent diabetes behaviour and life quality through fostering positive communication with parents (Holtz et al, 2020), and building a trusting parental relationship through communications to decrease conflict (Babler and Strickland, 2015).…”

Section: Discussionsupporting

confidence: 83%

Parents’ perspectives of factors affecting parent–adolescent communication about type 1 diabetes and negotiation of self-management responsibilities

Rawdon

Kilcullen

Murphy

et al. 2022

J Child Health Care

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Adolescence is an important time in which young people take on type 1 diabetes (T1D) self-management responsibility. Parents are key facilitators of this process. Little is known about parents’ experiences of communicating with their children about T1D during adolescence. Semi-structured interviews were conducted with 32 parents (24 mothers and 8 fathers) of adolescents (11–17 years) living with T1D to explore how parents communicate about T1D and self-management with their adolescent children. Parents were recruited through two national child and adolescent diabetes and endocrine clinics and online advertisement through a national diabetes advocacy organisation. Interviews were transcribed verbatim and thematically analysed. Six themes were identified: parent factors, quality of the parent–adolescent relationship, communication strategies, adolescent factors, communication triggers and family/system factors. Understanding factors that impact communication about self-management between parents and adolescents will enable healthcare professionals to provide support and targeted interventions as parent and adolescent roles change over time.

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Section: Discussionsupporting

confidence: 83%

Parents’ perspectives of factors affecting parent–adolescent communication about type 1 diabetes and negotiation of self-management responsibilities

Rawdon

Kilcullen

Murphy

et al. 2022

J Child Health Care

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“…However, disease care is complex. While they want their parents to be involved, the patients are unsure about expressing their needs because they fear being controlled by their parents [ 11 , 18 ]. Therefore, improvement in parent involvement and the provision of communication and consultation opportunities for parents and young patients are also topics that merit attention in clinical care.…”

Section: Discussionmentioning

confidence: 99%

“…Only by understanding the different views can we further explore the causes of such differences, and develop strategies to ensure that patients, primary caregivers, and healthcare providers have consistent views on health needs, thus enhancing patients’ self-care motivation and improving the results of disease control [ 11 , 12 , 16 ]. Despite extensive research on care related to the transition period [ 11 , 12 , 13 , 17 , 18 ], few studies have investigated the extent of agreement regarding healthcare needs across patients, primary caregivers, and healthcare providers. The purpose of this study was to systemically identify the healthcare needs of patients with type 1 diabetes during the transition period from adolescence to adulthood by analyzing the perspectives of patients, primary caregivers, and healthcare providers.…”

Section: Introductionmentioning

confidence: 99%

A Delphi Study on the Healthcare Needs of Patients with Type 1 Diabetes during the Transition from Adolescence to Adulthood: Consensus among Patients, Primary Caregivers, and Healthcare Providers

Chiang

Tsay

Chen

et al. 2021

IJERPH

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Patients with type 1 diabetes mellitus at the age of 16–25 face the challenges of the deterioration of disease control and accelerated exacerbation. Providing interventions that meet patient’s healthcare needs can reduce the impact and improve health outcome. The purpose of this study was to identify the healthcare needs of patients with type 1 diabetes during the adolescence to adulthood transition period from the perspectives of patients, parents and healthcare providers. A two-round Delphi study was conducted among 48 participants, and included 17 patients, 16 primary caregivers, and 15 healthcare providers. The central tendency and dispersion were computed to establish a consensus. Seventy-one healthcare needs were identified across five dimensions—technology, external support, internal support, management, and healthcare—and 56 were considered as important healthcare needs and with a moderate to high level of agreement. Meanwhile, patients, primary caregivers, and healthcare providers were found to display significantly different opinions (p < 0.05) for 23 healthcare needs. This study concluded the consensus of the healthcare needs of patients with type 1 diabetes mellitus during the adolescence to adulthood transition period from a systematic investigation. The findings can serve as reference for developing transitional intervention strategies.

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“…Further, our data demonstrate that when parents initiate the messaging that is perceived to be negative for the child, it can be considered as “nagging” by the parents. However, when the child reached out, there was more positive impact [ 24 ]. Future studies should also measure different types of communication—both positive and negative.…”

Section: Discussionmentioning

confidence: 99%

“…Therefore, an mHealth intervention, MyT1DHero , was developed to help support and improve parent-adolescent communication related to diabetes management. The focus of MyT1DHero ’s is to improve positive communication regarding T1D in an effort to reduce “blood sugar nagging” by parents [ 24 ]. These improvements in family communication were, in turn, expected to reduce family conflict, improve adolescents’ adherence to blood glucose monitoring, and thus improve HbA 1c levels and quality of life.…”

Section: Introductionmentioning

confidence: 99%

An mHealth-Based Intervention for Adolescents With Type 1 Diabetes and Their Parents: Pilot Feasibility and Efficacy Single-Arm Study

Holtz

Mitchell

Holmstrom

et al. 2021

JMIR Mhealth Uhealth

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Background Type 1 diabetes (T1D) affects more than 165,000 individuals younger than 20 years in the United States of America. The transition from parent management to parent-child team management, with the child taking on increased levels of self-care, can be stressful and is associated with a deterioration in self-management behaviors. Therefore, a mobile app intervention, MyT1DHero, was designed to facilitate diabetes-specific positive parent-adolescent communication and improve diabetes-related outcomes. The MyT1DHero intervention links an adolescent with T1D and their parent through 2 separate app interfaces and is designed to promote positive communication regarding T1D management. Objective The aim of this pilot study was to determine (1) the initial efficacy of the MyT1DHero intervention in improving diabetes outcomes in adolescents, specifically the hemoglobin A1c (HbA1c) levels, diabetes care adherence, and quality of life, and (2) the adolescents’ overall satisfaction with this intervention. Methods This pilot study included 30 adolescent-parent pairs who used the MyT1DHero app in a 12-week single-arm clinical trial. Participants were recruited from the local pediatric endocrinology subspecialty clinic via snowball sampling. HbA1c levels, diabetes care adherence, quality of life, family conflict, and satisfaction levels were measured and analyzed using paired sample two-sided t tests and linear regression analyses. Results The final analysis included 25 families. The mean age of the adolescents was 12.28 (SD 1.62) years. Half of the participants (13/25) reported a diabetes diagnosis of less than 5 years. After 12 weeks of the intervention, diabetes care adherence significantly improved (before the study: mean 3.87 [SD 0.59]; after the study: mean 4.19 [SD 0.65]; t21=–2.52, P=.02, d=0.52) as did quality of life (before the study: mean 4.02 [SD 0.84]; after the study: mean 4.27 [SD 0.73]; t24=2.48, P=.01, d=0.32). HbA1c levels (before the study: mean 8.94 [SD 1.46]; after the study: mean 8.87 [SD 1.29]; t24=0.67, P=.51, d=0.04) and family conflict (before the study: mean 2.45 [SD 0.55]; after the study: mean 2.61 [SD 0.45]; t23=0.55, P=.14, d=0.32) changed in the hypothesized direction, but the change was not significant. However, higher use of the mobile app was associated with more improvement in HbA1c levels (F1,20=9.74, P<.005; R2=0.33). Overall, the adolescents were satisfied with the app intervention. Conclusions In a 12-week pilot study of the mobile app intervention designed to facilitate parent-adolescent communication for improving diabetes outcomes, significant benefits were demonstrated in self-care adherence and quality of life. A randomized controlled trial with a longer intervention is needed to replicate these findings and to determine the stability of the intervention effects. Trial Registration ClinicalTrials.gov NCT03436628; https://clinicaltrials.gov/ct2/show/NCT03436628

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Teen and parental perspectives regarding transition of care in type 1 diabetes

Cited by 12 publications

References 37 publications

Parents’ perspectives of factors affecting parent–adolescent communication about type 1 diabetes and negotiation of self-management responsibilities

Parents’ perspectives of factors affecting parent–adolescent communication about type 1 diabetes and negotiation of self-management responsibilities

A Delphi Study on the Healthcare Needs of Patients with Type 1 Diabetes during the Transition from Adolescence to Adulthood: Consensus among Patients, Primary Caregivers, and Healthcare Providers

An mHealth-Based Intervention for Adolescents With Type 1 Diabetes and Their Parents: Pilot Feasibility and Efficacy Single-Arm Study

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