The DAWN Youth WebTalk Study: methods, findings, and implications

Peyrot, Mark

doi:10.1111/j.1399-5448.2009.00612.x

Cited by 44 publications

(35 citation statements)

References 8 publications

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“…Whereas it is challenging to try to make everyone feel "there is something in it for me", the results along with those from previous studies also suggest that a further developed online community may enhance such positive experiences [3,31,36]. A portal where different views and perspectives can be shared within a sense of social presence in a community would probably help to attract users [7,32].…”

Section: Resultsmentioning

confidence: 78%

“…One may question this strategy, as the information sought by young users is not limited to the experience of peers. In a recent multinational study, receiving information at diagnosis, and having access to multiple sources of information later, have been associated to better outcomes from young patients' and parents' perspectives [36]. The most frequently used source were diabetes medical teams, which might have valuable information to add in online dialogues provided they communicate in "the right way"-whatever that means [37].…”

Section: Resultsmentioning

confidence: 99%

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Young Patients’ Views on the Open Web 2.0 Childhood Diabetes Patient Portal: A Qualitative Study

Nordfeldt

Berterö

2012

Future Internet

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Abstract:Little is known about the views of young patients themselves on interactive Web portal services provided by pediatric practitioners. We aimed to explore their perceptions of a real-world diabetes portal that offers facts and contact with peers and practitioners; e.g., discussion forums, blog tools, self-care and treatment information, research updates and news from local practitioners. Twelve young patients (ages 12-21, median 15 years), one boyfriend, 7 mothers and one father each wrote an essay on their experience from use of the portal. Their essays underwent qualitative content analysis. A major theme was "Helping and facilitating daily life with diabetes", the portal was perceived as a place where contents are interesting, inspiring and may trigger users' curiosity. There were three subthemes; "Ease of use in my everyday life," which includes the perception that the portal was perceived as smooth and easy to enter and navigate whenever needed; that information was easy to understand for different groups of users. "Support via an exchange of experience," includes the ability to contact peers being regarded advantageous. Some said that just reading others' experiences can be helpful in terms of persevering; children could find peers in the same age group. "Evidence based information," includes the perception of the portal being a useful and trustworthy source of facts on e.g., physical activity, blood glucose, medical devices, emotional wellbeing, food and nutrition, and other aspects that impact living with OPEN ACCESSFuture Internet 2012, 4 515 diabetes. Young users expressed positive perceptions towards the interactive web portal. Such services seem to have great potential for supporting young patients and significant others -intergrading for confidence.

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Section: Resultsmentioning

confidence: 78%

Section: Resultsmentioning

confidence: 99%

Young Patients’ Views on the Open Web 2.0 Childhood Diabetes Patient Portal: A Qualitative Study

Nordfeldt

Berterö

2012

Future Internet

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“…One possible reason for this phenomenon may be that having a child diagnosed with a chronic disease such as diabetes cause many parents to experience a great deal of distress, and may in some cases even lead to parents developing symptoms of depression or post-traumatic stress which might affect their view of the well-being of their child [40], [41]. Others have found that parents might also be better at evaluating primarily observable behavior, while the inner lives of chronically ill children are better evaluated by the children themselves [42].…”

Section: Resultsmentioning

confidence: 99%

Symptoms of Emotional, Behavioral, and Social Difficulties in the Danish Population of Children and Adolescents with Type 1 Diabetes – Results of a National Survey

et al. 2014

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ObjectiveTo assess the prevalence of psychological difficulties in Danish children and adolescents with type 1 diabetes using both child/adolescent and caregiver reports, and to investigate associations between these symptoms and metabolic control, adherence, and quality of life.Research Design and Method:A total of 786 children and adolescents (8–17 years) recruited through the Danish Registry of Childhood Diabetes completed subscales of the Beck's Youth Inventories (BYI-Y), while 910 caregivers completed the Strength and Difficulties Questionnaire (SDQ). The participants also completed questionnaires assessing adherence and quality of life. BYI-Y and SDQ responses were compared with results from normative samples.ResultsChildren with diabetes generally reported a lower level of symptoms of depression and anxiety, while older adolescents in most cases were comparable to the normative samples. However, the numbers of patients with elevated scores were similar to normative groups, especially regarding the proportion of participants with ‘Extremely elevated’ scores. Caregivers of children and adolescents with diabetes generally reported the prevalence of elevated scores on the SDQ to exceed the prevalence observed in the norm sample – particularly with regard to older boys. Both BYI-Y and SDQ responses were significantly correlated with HbA1c, adherence, and quality of life.ConclusionsThis study finds Danish children and adolescents with diabetes to report lower or comparable levels of emotional difficulties compared to norms, while caregiver reports are less positive. The results therefore support the value of a multi-informant approach to the assessment of symptoms of psychological difficulty in girls and boys with diabetes.

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“…Here we adopt Wallander et al[5]’s broad definition: the combination of objective and subjective measures of well-being in multiple domains of life important to one’s culture and time[12]. Relevant QOL domains for children and families with type 1 diabetes include treatment satisfaction, family relationships, self-efficacy, lifestyle flexibility, anxiety, fears of glucose fluctuations, fear of diabetes complications, and treatment expectations.…”

Section: Introductionmentioning

confidence: 99%

“…While children with type 2 diabetes are generally asymptomatic, both children and their families encounter additional lifestyle challenges (e.g., weight reduction, increased physical activity) and numerous barriers to diabetes management that impact quality of life[11]. The DAWN Youth Survey found that 35% of young adults with type 2 diabetes and 48% of their parents reported poor well-being[12]. Two studies conducted in adults with type 2 diabetes using insulin pump therapy found that participants reported higher treatment satisfaction, less management burden and fewer social limitations[13, 14].…”

Section: Introductionmentioning

confidence: 99%

Quality of Life and Technology: Impact on Children and Families With Diabetes

2012

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Ensuring quality of life (QOL) while maintaining glycemic control within targets is an important challenge in type 1 and type 2 diabetes treatment. For children with diabetes, QOL includes enjoying meals, feeling safe in school, and perceiving positive, supportive relationships with parents, siblings, and friends. Yet many treatment-related and psychosocial barriers can interfere with a child’s QOL and their ability to manage diabetes effectively. Diabetes management also imposes considerable lifestyle demands that are difficult and often frustrating for children to negotiate at a young age. Recent advances in diabetes medications and technologies have improved glycemic control in children with diabetes. Two widely used technologies are the insulin pump and continuous glucose monitoring (CGM) system. These technologies provide patients with more flexibility in their daily life and information about glucose fluctuations. Several studies report improvements in glycemic control in children with type 1 diabetes using the insulin pump or sensor-augmented pump therapy. Importantly, these technologies may impact QOL for children and families with diabetes, although they are rarely used or studied in the treatment of children with type 2 diabetes. Further, emerging closed loop and web- and phone-based technologies have great potential for supporting diabetes self-management and perhaps QOL. A deeper understanding and appreciation of the impact of diabetes technology on children’s and parents’ QOL is critical for both the medical and psychological care of diabetes. Thus, the purpose of this review is to discuss the impact of new diabetes technologies on QOL in children, adolescents and families with type 1 diabetes.

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The DAWN Youth WebTalk Study: methods, findings, and implications

Cited by 44 publications

References 8 publications

Young Patients’ Views on the Open Web 2.0 Childhood Diabetes Patient Portal: A Qualitative Study

Young Patients’ Views on the Open Web 2.0 Childhood Diabetes Patient Portal: A Qualitative Study

Symptoms of Emotional, Behavioral, and Social Difficulties in the Danish Population of Children and Adolescents with Type 1 Diabetes – Results of a National Survey

Quality of Life and Technology: Impact on Children and Families With Diabetes

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