scholarly journals Parents’ experiences of caring for a young child with type 1 diabetes: a systematic review and synthesis of qualitative evidence

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
B. Kimbell ◽  
J. Lawton ◽  
C. Boughton ◽  
R. Hovorka ◽  
D. Rankin
Keyword(s):  
Type 1 Diabetes ◽  
Management Practices ◽  
Diabetes Management ◽  
Sociodemographic Factors ◽  
Future Research ◽  
Perceived Need ◽  
Qualitative Evidence ◽  
Practical Support ◽  
Parents Experiences

Abstract Aims To synthesise the qualitative evidence on parents’ experiences of caring for a child aged ≤8 years with type 1 diabetes to identify: the challenges they encounter; their views about support received; ways in which support could be improved; and, directions for future research. Methods We searched Medline, EMBASE, CINAHL, PsycINFO and Web of Science databases to identify qualitative studies reporting parents’ views and experiences of caring for a child with type 1 diabetes aged ≤8 years. Key analytical themes were identified using thematic synthesis. Results Fourteen studies were included. The synthesis resulted in the generation of two overarching themes. Monopolisation of life describes the all-encompassing impact diabetes could have on parents due to the constant worry they experienced and the perceived need for vigilance. It describes how parents’ caring responsibilities could affect their wellbeing, relationships and finances, and how a lack of trusted sources of childcare and a desire to enable a ‘normal’ childhood constrained personal choices and activities. However, use of diabetes technologies could lessen some of these burdens. Experiences of professional and informal support describes how encounters with healthcare professionals, while generally perceived as helpful, could lead to frustration and anxiety, and how connecting with other parents caring for a child with type 1 diabetes provided valued emotional and practical support. Conclusions This synthesis outlines the challenges parents encounter, their views about support received and ways in which support might be improved. It also highlights significant limitations in the current literature and points to important areas for future research, including how sociodemographic factors and use of newer diabetes technologies influence parents’ diabetes management practices and experiences. PROSPERO: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42019128710

scholarly journals Designing Online and Mobile Diabetes Education for Fathers of Children With Type 1 Diabetes: Mixed Methods Study

JMIR Diabetes ◽  
10.2196/13724 ◽  
2019 ◽  
Vol 4 (3) ◽  
pp. e13724 ◽  
Author(s):  
Anastasia Albanese-O'Neill ◽  
Desmond A Schatz ◽  
Nicole Thomas ◽  
Jay M Bernhardt ◽  
Christa L Cook ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Diabetes Management ◽  
Scientific Evidence ◽  
Diabetes Education ◽  
Qualitative Interviews ◽  
Unmet Need ◽  
Future Research ◽  
Exploratory Research ◽  
Text Content

Background Fathers make unique and central contributions to the health of their children. However, research in type 1 diabetes (T1D) education largely ignores the needs of fathers, including during the development of online and mobile educational materials. Objective The purpose of this study was to solicit and incorporate input from fathers of children with T1D into the design, content, and infrastructure of a suite of online diabetes self-management education and support (DSMES) resources. Methods The study took part in three phases: (1) exploratory research, (2) website and subdomain development, and (3) evaluation. Fathers of children with T1D (n=30) completed surveys and semistructured qualitative interviews. Thematic content analysis was used to identify fathers’ content and design preferences. An online DSMES website (T1DToolkit.org) and a separate mobile subdomain targeting fathers (Mobile Diabetes Advice for Dads, or mDAD) were developed. A prototype of the site for fathers was evaluated by 33 additional father participants. End user feedback was elicited via survey. Results Participants in the exploratory phase were enthusiastic about the online diabetes resources. Preferences included high-quality design, availability via mobile phone and tablet, brief text content supplemented with multimedia and interactive features, reminders via text or email, endorsement by medical professionals, and links to scientific evidence. The mDAD subdomain received high usability and acceptability ratings, with 100% of participants very likely or likely to use the site again. Conclusions The development of eHealth educational platforms for fathers of children with T1D remains an unmet need in optimizing diabetes management. This study incorporated fathers’ feedback into the development of a suite of online diabetes education resources. The findings will serve as the basis for future research to assess the clinical efficacy of the website, its subdomain targeting fathers, and additional subdomains targeting unique populations.

scholarly journals Augmenting Traditional Support Groups for Adolescents With Type 1 Diabetes Using Instagram: Mixed Methods Feasibility Study

JMIR Diabetes ◽  
10.2196/21405 ◽  
2021 ◽  
Vol 6 (4) ◽  
pp. e21405
Author(s):  
Faisal S Malik ◽  
Cara Lind ◽  
Sarah Duncan ◽  
Connor Mitrovich ◽  
Michael Pascual ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Support Groups ◽  
Support Group ◽  
Diabetes Management ◽  
Future Research ◽  
Group Model ◽  
Group Sessions ◽  
Use Of Social Media

Background In-person support groups have been shown to benefit adolescents with type 1 diabetes (T1D) by helping to decrease perceived diabetes burden and improving knowledge related to chronic disease management. However, barriers exist to participation in traditional support groups, including the timing and location of meetings and resources needed to attend. Adolescents are increasingly utilizing online support groups, which may provide solutions to some of the challenges faced when implementing in-person support groups. Objective The purpose of this study was to assess the feasibility and acceptability of a hybrid support group model where traditional in-person support groups were augmented with Instagram participation between monthly support group sessions for adolescents with T1D. Methods Participants (13-18 years old with T1D for ≥6 months) were asked to post photos each week for 3 months based on predetermined topics related to diabetes management. At the end of each month, participants attended an in-person support group to discuss their photos using the Photovoice method. Feasibility was assessed through enrollment and retention, number of Instagram posts, poststudy questionnaire, and a template analysis of the focus groups. Results Of 24 eligible participants, 16 (67%) enrolled in the study, with 3 dropping out prior to support group participation. The number of photos posted over 3 months ranged from 14 to 41. Among the 11 participants who completed a follow-up questionnaire, the majority of participants (6/11, 55%) reported that they very much enjoyed participating in the hybrid support group, and more than three-quarters (9/11, 82%) of participants reported that they “related to the photos posted.” Over half of participants (8/11, 73%) reported “learning something new from the photos posted,” which arose from sharing knowledge and experiences related to navigating the common challenges of diabetes management. Additionally, the use of Instagram posts helped facilitate peer discussions during the in-person support groups. Conclusions The novel combination of using Instagram to augment traditional in-person support groups was feasible and acceptable to adolescents with T1D. The overall satisfaction with the hybrid support group model, combined with the observed engagement with peers between support group sessions over social media, suggests that a hybrid support group model may have the potential to provide more pronounced benefits to adolescents than in-person meetings alone. Future research should investigate the use of social media as part of the support group model and examine the potential improvement of self-esteem, benefit-finding, and social support using validated tools in adolescents with diabetes.

scholarly journals Screening, prevalence, treatment and control of kidney disease in patients with type 1 and type 2 diabetes in low-to-middle-income countries (2005–2017): the International Diabetes Management Practices Study (IDMPS)

Diabetologia ◽  
2021 ◽  
Author(s):  
Jean Claude Mbanya ◽  
Pablo Aschner ◽  
Juan J. Gagliardino ◽  
Hasan İlkova ◽  
Fernando Lavalle ◽  
...  
Keyword(s):  
Type 2 Diabetes ◽  
Type 1 Diabetes ◽  
Kidney Disease ◽  
Management Practices ◽  
Diabetes Management ◽  
Middle Income ◽  
Middle Income Countries ◽  
And Control

Abstract Aims/hypothesis Diabetes is the leading cause of kidney disease worldwide. There is limited information on screening, treatment and control of kidney disease in patients with diabetes in low-to-middle-income countries (LMICs). Methods The International Diabetes Management Practices Study is an ongoing, non-interventional study of clinical profiles and practices among patients receiving outpatient care mainly by internal medicine physicians and endocrinologists in LMICs. We examined screening, prevalence, treatment and control of kidney disease across seven waves (W) of data collection between 2005 and 2017. Results Among 15,079 patients with type 1 and 66,088 patients with type 2 diabetes, screening for kidney disease increased between W2 and W3 followed by a plateau (type 1 diabetes: W2, 73.7%; W3, 84.1%; W7, 83.4%; type 2 diabetes: W2, 65.1%; W3, 82.6%; W7, 86.2%). There were also decreasing proportions of patients with microalbuminuria (type 1 diabetes: W1, 27.1%; W3, 14.7%; W7, 13.8%; type 2 diabetes: W1, 24.5%; W3, 12.6%; W7, 11.9%) and proteinuria (type 1 diabetes: W1, 14.2%; W3, 8.7%; W7, 8.2%; type 2 diabetes: W1, 15.6%; W3, 9.3%; W7, 7.6%). Fewer patients were reported as receiving dialysis for both type 1 diabetes (W2, 1.4%; W7, 0.3%) and type 2 diabetes (W2, 0.9%; W7, 0.2%) over time. While there was no change in mean HbA1c or prevalence of diagnosed hypertension (type 1 diabetes: W1, 22.7%; W7, 19.9%; type 2 diabetes: W1, 60.9%; W7, 66.2%), the use of statins had increased among patients diagnosed with dyslipidaemia (type 1 diabetes: W1, 77.7%; W7, 90.7%; type 2 diabetes: W1, 78.6%; W7, 94.7%). Angiotensin II receptor blockers (type 1 diabetes: W1, 18.0%; W7, 30.6%; type 2 diabetes: W1, 24.2%; W7, 43.6%) were increasingly used over ACE inhibitors after W1 (type 1 diabetes: W1, 65.0%; W7, 55.9%; type 2 diabetes: W1, 55.7%, W7, 41.1%) among patients diagnosed with hypertension. Conclusions/interpretation In LMICs, real-world data suggest improvement in screening and treatment for kidney disease in patients with type 1 and type 2 diabetes attending non-nephrology clinics. This was accompanied by decreasing proportions of patients with microalbuminuria and proteinuria, with fewer patients who reported receiving dialysis over a 12-year period. Graphical abstract

scholarly journals A systematic review of parents’ experiences of raising a child with type 1 diabetes

2021 ◽  
Vol 21 (1) ◽  
pp. 43-58
Author(s):  
Saffron Simpson ◽  
Paul Hanna ◽  
Christina J Jones
Keyword(s):  
Mental Health ◽  
Type 1 Diabetes ◽  
Psychological Impact ◽  
Future Research ◽  
Health Issues ◽  
Parental Experience ◽  
Study Characteristics ◽  
Change Of Life ◽  
Parents Experiences

Background: There are currently 1.1 million young people estimated to have type 1 diabetes (T1D) across the world. A diagnosis of T1D impacts not only the children’s lives but also those of the parents.Aim: To understand the experiences of parents raising a child with T1D.Methods: For inclusion, studies had to report qualitative data on parents' experiences of raising a child with a diagnosis of T1D. Parents included mothers, fathers or any other primary caregivers. Eleven databases were systematically searched for relevant articles. Studies were quality assessed and study characteristics extracted. The data were thematically synthesised.Results: Thirty-two studies met the inclusion criteria. Thematic synthesis yielded two analytical themes: ‘adjusting to a new reality’ and ‘navigating appropriate T1D support’. The five descriptive themes that contributed to these were ‘distressing diagnostic experience’, ‘change of life routine’, ‘enablers and barriers to support from others’, ‘reconstruction of family dynamics’ and ‘psychological impact over time’.Conclusions: Difficulties parents encounter in support received from school and healthcare professionals are highlighted. Parents’ mental health needs should be attended to throughout T1D clinic appointments. Future research should explore fathers' experiences, as well as characteristics (such as employment status, education, relationship status and underlying mental health issues) which may affect parental experience, given the paucity of existing evidence.

scholarly journals Augmenting Traditional Support Groups for Adolescents With Type 1 Diabetes Using Instagram: Mixed Methods Feasibility Study (Preprint)

2020 ◽  
Author(s):  
Faisal S Malik ◽  
Cara Lind ◽  
Sarah Duncan ◽  
Connor Mitrovich ◽  
Michael Pascual ◽  
...  
Keyword(s):  
Social Media ◽  
Type 1 Diabetes ◽  
Support Groups ◽  
Support Group ◽  
Diabetes Management ◽  
Future Research ◽  
Group Model ◽  
Group Sessions ◽  
Use Of Social Media

BACKGROUND In-person support groups have been shown to benefit adolescents with type 1 diabetes (T1D) by helping to decrease perceived diabetes burden and improving knowledge related to chronic disease management. However, barriers exist to participation in traditional support groups, including the timing and location of meetings and resources needed to attend. Adolescents are increasingly utilizing online support groups, which may provide solutions to some of the challenges faced when implementing in-person support groups. OBJECTIVE The purpose of this study was to assess the feasibility and acceptability of a hybrid support group model where traditional in-person support groups were augmented with Instagram participation between monthly support group sessions for adolescents with T1D. METHODS Participants (13-18 years old with T1D for ≥6 months) were asked to post photos each week for 3 months based on predetermined topics related to diabetes management. At the end of each month, participants attended an in-person support group to discuss their photos using the Photovoice method. Feasibility was assessed through enrollment and retention, number of Instagram posts, poststudy questionnaire, and a template analysis of the focus groups. RESULTS Of 24 eligible participants, 16 (67%) enrolled in the study, with 3 dropping out prior to support group participation. The number of photos posted over 3 months ranged from 14 to 41. Among the 11 participants who completed a follow-up questionnaire, the majority of participants (6/11, 55%) reported that they very much enjoyed participating in the hybrid support group, and more than three-quarters (9/11, 82%) of participants reported that they “related to the photos posted.” Over half of participants (8/11, 73%) reported “learning something new from the photos posted,” which arose from sharing knowledge and experiences related to navigating the common challenges of diabetes management. Additionally, the use of Instagram posts helped facilitate peer discussions during the in-person support groups. CONCLUSIONS The novel combination of using Instagram to augment traditional in-person support groups was feasible and acceptable to adolescents with T1D. The overall satisfaction with the hybrid support group model, combined with the observed engagement with peers between support group sessions over social media, suggests that a hybrid support group model may have the potential to provide more pronounced benefits to adolescents than in-person meetings alone. Future research should investigate the use of social media as part of the support group model and examine the potential improvement of self-esteem, benefit-finding, and social support using validated tools in adolescents with diabetes.

scholarly journals Pilot Study of a Novel Application for Data Visualization in Type 1 Diabetes

2017 ◽  
Vol 11 (4) ◽  
pp. 800-807 ◽  
Author(s):  
Jenise C. Wong ◽  
Aaron B. Neinstein ◽  
Howard Look ◽  
Brandon Arbiter ◽  
Nora Chokr ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
User Interface ◽  
Data Visualization ◽  
Management Practices ◽  
Diabetes Management ◽  
Insulin Pump ◽  
Rapid Development ◽  
Shared Responsibility ◽  
Software Application

Background: A novel software application, Blip, was created to combine and display diabetes data from multiple devices in a uniform, user-friendly manner. The objective of this study was to test the usability of this application by adults and caregivers of children with type 1 diabetes (T1D). Methods: Patients (n = 35) and caregivers of children with T1D (n = 30) using an insulin pump for >1 year ± CGM were given access to the software for 3 months. Diabetes management practices and the use of diabetes data were assessed at baseline and at study end, and feedback was gathered in a concluding questionnaire. Results: At baseline, 97% of participants agreed it was important for patients to know how to interpret glucose data. Most felt that clinicians and patients should share the tasks of reviewing data, finding patterns, and making changes to their insulin plans. However, despite valuing shared responsibility, at baseline, 43% of participants never downloaded pump data, and only 9% did so at least once per month. At study end, 72% downloaded data at least once during the 3-month study, and 38% downloaded at least once per month. Regarding the software application, participants liked the central repository of data and the user interface. Suggestions included providing tools for understanding and interpreting glucose patterns, an easier uploading process, and access with mobile devices. Conclusions: Collaboration between developers and researchers prompted iterative, rapid development of data visualization software and improvements in the uploading process and user interface, which facilitates clinical integration and future clinical studies.

scholarly journals Adolescents’ and their parents’ experiences of using a closed-loop system to manage type 1 diabetes in everyday life: qualitative study

2021 ◽  
pp. 174239532098592
Author(s):  
D Rankin ◽  
B Kimbell ◽  
R Hovorka ◽  
J Lawton
Keyword(s):  
Type 1 Diabetes ◽  
Closed Loop ◽  
Diabetes Management ◽  
Loop System ◽  
Closed Loop System ◽  
Biographical Disruption ◽  
Glucose Levels ◽  
Dietary Flexibility ◽  
Parents Experiences

Objectives Type 1 diabetes can have life-shattering consequences for adolescents and parents. A closed-loop system is a cutting-edge technology which automatically regulates glucose to reduce the burden of diabetes management. We explored adolescents’ and parents’ experiences of using this technology to understand how it affects their biographies and everyday lives. Methods In-depth interviews with 18 adolescents newly diagnosed with type 1 diabetes and 21 parents after ≥12 months experience using closed-loop technology. Data were analysed thematically. Results Participants reported very few disruptions to their lives when using a closed-loop. Reports of family conflict were minimal as the closed-loop enabled dietary flexibility and glucose levels to be checked effortlessly. Adolescents described doing ‘normal’ activities without worrying about high/low glucose, and parents reported allowing them to do so unsupervised because the closed-loop would regulate their glucose and keep them safe. Some adolescents expressed concerns about the visibility of components and, to avoid stigma, described curtailing activities such as swimming. Participants described how the closed-loop enabled adolescents to be in control of, or create distance from, diabetes. Discussion The closed-loop has life-enhancing consequences for both adolescents and parents and helps to reduce the biographical disruption of type 1 diabetes in this age group.

Frequency of Diabetes-Related Complications in Type 1 and Type 2 Diabetes—Results from the International Diabetes Management Practices Study (IDMPS)

Diabetes ◽  
2018 ◽  
Vol 67 (Supplement 1) ◽  
pp. 1584-P
Author(s):  
JUAN J. GAGLIARDINO ◽  
PABLO ASCHNER ◽  
HASAN M. ILKOVA ◽  
FERNANDO J. LAVALLE-GONZALEZ ◽  
AMBADY RAMACHANDRAN ◽  
...  
Keyword(s):  
Type 2 Diabetes ◽  
Management Practices ◽  
Diabetes Management

Habit and Routine Interventions with Emerging Adults with Diabetes: An Integrative Review

2021 ◽  
pp. 019394592110322
Author(s):  
Kathleen M. Hanna ◽  
Jed R. Hansen ◽  
Kim A. Harp ◽  
Kelly J. Betts ◽  
Diane Brage Hudson ◽  
...  
Keyword(s):  
Type 1 Diabetes ◽  
Health Outcomes ◽  
Emerging Adults ◽  
Text Messaging ◽  
Integrative Review ◽  
Self Management ◽  
Future Research ◽  
Medical Librarian

Although theoretical and empirical writings on habits and routines are a promising body of science to guide interventions, little is known about such interventions among emerging adults with type 1 diabetes. Thus, an integrative review was conducted to describe interventions in relation to habits and routines, their influence on outcomes, and users’ perspectives. A medical librarian conducted a search. Teams screened titles, abstracts, and articles based upon predefined criteria. Evidence from the final 11 articles was synthesized. A minority of investigators explicitly articulated habits and routines theoretical underpinnings as part of the interventions. However, text messaging or feedback via technology used in other interventions could be implicitly linked to habits and routines. For the most part, these interventions positively influenced diabetes self-management-related behaviors and health outcomes. In general, the interventions were perceived positively by users. Future research is advocated using habit and routine theoretical underpinnings to guide interventions.

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