scholarly journals Communication matters: The role of autonomy-supportive communication by health care providers and parents in adolescents with type 1 diabetes

2020 ◽  
Vol 163 ◽  
pp. 108153 ◽  
Author(s):  
Eveline R. Goethals ◽  
Sarah S. Jaser ◽  
Chris Verhaak ◽  
Sofie Prikken ◽  
Kristina Casteels ◽  
...  
2017 ◽  
Vol 44 (1) ◽  
pp. 72-82 ◽  
Author(s):  
Robin Whittemore ◽  
Rebekah M. Zincavage ◽  
Sarah S. Jaser ◽  
Margaret Grey ◽  
Julia L. Coleman ◽  
...  

Purpose The purpose of this study was to understand the experience of parenting an adolescent with type 1 diabetes (T1DM), to develop a prototype of an eHealth program for parents of adolescents with T1DM, and to evaluate the prototype content and acceptability from the perspective of parents and health care providers. Methods A multiphase method was used generating both qualitative and quantitative data at multiple time points. There were 27 parents of adolescents aged 12 to 18 years with T1DM and 16 health care providers who participated in semistructured interviews to identify parental challenges; 53 parents and 27 providers evaluated the prototype. Thematic content analysis was used to analyze interview transcripts, and descriptive statistics were used to summarize survey data. Results Challenges experienced by parents of adolescents with T1DM included understanding the developmental and hormonal changes of adolescence that affect diabetes care, feeling tension between adolescent independence and parent control, communicating without nagging or conflict, transferring diabetes care responsibility safely, dealing with feelings of stress and distress, and perceiving a lack of resources for T1DM care and insufficient personal time for self-care. In the prototype evaluation, both parents and providers found content to be relevant and provided feedback to guide the development of the full program. Conclusions Parents of adolescents with T1DM and providers expressed a need for parents to have more support in transitioning diabetes care from parent to adolescent. eHealth programs offer an ideal way to address these needs and ultimately can be linked to electronic medical records improving quality and efficiency of health care in this population.


2020 ◽  
Vol 46 (5) ◽  
pp. 444-454
Author(s):  
Manuela Sinisterra ◽  
Katherine Patterson Kelly ◽  
Caitlin Shneider ◽  
Ashley El-Zein ◽  
Ellen Swartwout ◽  
...  

Purpose The purpose of the study was to explore facilitators and barriers to self-management behaviors in adolescents with type 1 diabetes (T1D) to inform the development of an mHealth platform. Methods Eight adolescents with T1D, 9 parents, and 13 health care providers participated in separate focus groups that explored teen self-management behaviors. Results Adolescents and their parents have distinct preferences for handling diabetes management and use of mHealth technologies. Health care providers support the use of new technologies yet acknowledge concern meeting the potential increased volume of communication requests from teens and families. Conclusion Stakeholders agreed that an ideal mHealth platform would facilitate open communication between teens and their care network and easily integrate with other diabetes technologies. Future directions include incorporating additional feedback from stakeholders to build and modify the mHealth platform. The use of mHealth platforms could be integrated into clinical practice to optimize self-management and support communication between educators, providers, and families in between clinic visits.


2020 ◽  
Vol 59 (4-5) ◽  
pp. 388-395
Author(s):  
Samantha P. Bento ◽  
MaryJane S. Campbell ◽  
Olivia Soutullo ◽  
Fran R. Cogen ◽  
Maureen Monaghan

Pediatric health care providers are in a unique position to discuss the health implications of alcohol, tobacco, and drug use with adolescents and young adults (AYAs) with type 1 diabetes (T1D). This study evaluated the frequency of self-reported substance use and associated demographic and clinical characteristics in a sample of AYAs with T1D and patient-provider discussions of substance use in T1D care. Sixty-four AYAs completed questions about substance use from the Youth Risk Behavior Survey (YRBS). Corresponding diabetes clinic visits were audio-recorded, transcribed, and reviewed to examine substance use discussions. A total of 56.3% of AYAs reported ever engaging in substance use; 40.6% reported substance use within the past 30 days. Five AYAs had discussions about substance use during their most recent diabetes clinic visit. Substance use should be proactively addressed by pediatric health care providers and AYAs should be encouraged to raise questions related to substance use during clinic visits.


2014 ◽  
Vol 21 (3) ◽  
pp. 234-243 ◽  
Author(s):  
Jessica M. Valenzuela ◽  
Laura B. Smith ◽  
Jeanette M. Stafford ◽  
Ralph B. D’Agostino ◽  
Jean M. Lawrence ◽  
...  

2018 ◽  
Author(s):  
Tim Wysocki ◽  
Jessica Pierce ◽  
Cindy Caldwell ◽  
Karen Aroian ◽  
Louis Miller ◽  
...  

BACKGROUND Management of type 1 diabetes (T1D) among children aged <6 years is exceptionally challenging for parents and caregivers. Metabolic and psychosocial outcomes among very young children with T1D (YC-T1D) are tightly associated with their parents’ ability to meet these challenges. There is scant research testing interventions targeting these issues and few resources to equip health care providers with feasible and effective coping strategies for these parents. User-centered design (UCD) of a continuously accessible Web-based resource could be a mechanism for helping parents of YC-T1D cope more effectively with the complex challenges they face by providing them with information, solutions, and emotional support. OBJECTIVE The objectives of this paper are to (1) describe the application of UCD principles to the development of a Web-based coping intervention designed by and for parents of very young children (<6 years old) with T1D; (2) illustrate the use of crowdsourcing methods in obtaining the perspectives of parents, health care providers, and Web development professionals in designing and creating this resource; and (3) summarize the design of an ongoing randomized controlled trial (RCT) that is evaluating the effects of parental access to this resource on pertinent child and parent outcomes. METHODS This paper illustrates the application of UCD principles to create a Web-based coping resource designed by and for parents of YC-T1D. A Web-based Parent Crowd, a Health Care Provider Crowd, and a Focus Group of minority parents provided input throughout the design process. A formal usability testing session and design webinars yielded additional stakeholder input to further refine the end product. RESULTS This paper describes the completed website and the ongoing RCT to evaluate the effects of using this Web-based resource on pertinent parent and child outcomes. CONCLUSIONS UCD principles and the targeted application of crowdsourcing methods provided the foundation for the development, construction, and evaluation of a continuously accessible, archived, user-responsive coping resource designed by and for parents of YC-T1D. The process described here could be a template for the development of similar resources for other special populations that are enduring specific medical or psychosocial distress. The ongoing RCT is the final step in the UCD process and is designed to validate its merits.


2020 ◽  
Vol 25 (1) ◽  
pp. 35-39 ◽  
Author(s):  
Brianne Redquest ◽  
Yona Lunsky

Purpose There has been an increase in research exploring the area of intellectual and developmental disabilities (IDD) and diabetes. Despite being described as instrumental to diabetes care for people with IDD, the role and experiences of family carers, such as parents and siblings, are often neglected in this research. However, it is clear that family carers do not feel that they have sufficient knowledge about diabetes. The purpose of this commentary is to extend the content from “Diabetes and people with learning disabilities: Issues for policy, practice, and education (Maine et al., 2020)” and discuss how family carers can feel better supported when caring for someone with IDD and diabetes. Design/methodology/approach This commentary discusses specific efforts such as STOP diabetes, DESMOND-ID and OK-diabetes for people with IDD including family carers. Encouragement is given for health care providers to recommend such programmes to people with IDD and their family carers. It is also suggested that health care providers involve family carers in diabetes care planning and implementation for people with IDD. Findings It is hoped that if changes are made to current diabetes practices and more research with family carers is conducted, diabetes prevention and management for people with IDD will be more successful and family carers can feel more confident in providing support to their loved ones. Originality/value Research exploring the role of family carers in diabetes care for people with IDD and diabetes is very limited. This commentary makes recommendations to help family carers feel better supported in their role. It also provides areas for future research.


2021 ◽  
Vol 19 (S1) ◽  
Author(s):  
Luna El Bizri ◽  
Laila Ghazi Jarrar ◽  
Wael K. Ali Ali ◽  
Abdifatah H. Omar

Abstract Background Self-care interventions offer a solution to support the achievement of three goals of the World Health Organization (WHO): to improve universal health coverage, reach people in humanitarian situations, and improve health and well-being. In light of implementing WHO consolidated guidelines on self-care interventions to strengthen sexual and reproductive health (SRH) in the Eastern Mediterranean Region (EMR), especially during the COVID-19 pandemic, pharmacists from four different EMR countries discussed the current SRH situation, inequality gaps, barriers to SRH service access and the pharmacist’s crucial role as a first-line responder to patients before, during and after COVID-19. Case presentation Self-care interventions for SRH allow health care providers to serve a greater number of patients, improve progress toward universal health coverage, and reach people in humanitarian crises. In fact, these interventions can be significantly enhanced by utilizing community pharmacists as first-line health care providers. This review highlights the important role of community pharmacists in promoting self-care interventions and empowering individuals, families and communities. As a result, well-informed individuals will be authoritative in their health decisions. Exploring self-care interventions in the EMR was done through reviewing selected SRH services delivery through community pharmacists before and during the COVID-19 pandemic in Egypt, Jordan, Lebanon and Somalia. Before the COVID-19 pandemic, community pharmacists were found to be excluded from both governmental and nongovernmental SRH programmes. During the pandemic, community pharmacists managed to support patients with self-care interventions, whether voluntarily or through their pharmacy associations. This highlights the need for the health care decision-makers to involve and support community pharmacists in influencing policies and promoting self-care interventions. Conclusion Self-care interventions can increase individuals’ choice and autonomy over SRH. Supporting community pharmacists will definitely strengthen SRH in the EMR and may help make the health system more efficient and more targeted.


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