Type 1 diabetes: children and adolescents’ knowledge and questions

Roper, Susanne Olsen; Call, A.; Leishman, Joan M.; Ratcliffe, G. Cole; Mandleco, Barbara; Dyches, Tina Taylor; Marshall, Elaine S.

doi:10.1111/j.1365-2648.2009.05033.x

Cited by 35 publications

(52 citation statements)

References 25 publications

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“…However, it was difficult to engage children in discussions without visual tools. This observation is in accordance with a study by Roper et al [49], in which it was found that children want to know more about diabetes care, management, and consequences and that the information should be given in an appropriate form in a child-centered context where they can easily ask questions. A study by Højlund [50] found that the type of diagnosis was very important in communication and the social relation between health care professionals and a child patient.…”

Section: Discussionsupporting

confidence: 91%

Characteristics of being hospitalized as a child with a new diagnosis of type 1 diabetes: a phenomenological study of children’s past and present experiences

2015

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BackgroundOur understanding of children and childhood has changed over the last few decades, which may have an impact on children’s conditions in hospitals. Children’s rights have been strengthened by the “Convention on the Rights of the Child” and ward regulations. The aim of this Norwegian study was to identify potential characteristics of children's lived experience of being hospitalized diagnosed with type 1 diabetes today and from a retrospective view in the period 1950–1980, despite the many obvious external changes.MethodsThis study presents a further analysis of data from two previous phenomenological studies. The first had a retrospective perspective, and the second assumed a contemporary perspective. Twelve adults and nine children who had been hospitalized for newly diagnosed type 1 diabetes at the age of approximately 6–12 years old participated. The adults relayed narratives from their childhood memories through interviews, and the study with the children was designed as a combination of observations, in-depth interviews, and photographs. A hermeneutic phenomenological method was used in the analysis.ResultsThe analysis revealed a meaning structure that described a tension between vulnerability and agency in the experiences of being hospitalized as a child, both past and present. The experiences may further be characterized as alienation versus recognition and as passivity versus activity, relating to both the hospital environment and the illness.ConclusionsTo a greater extent than ever, children today tend to experience themselves as active and competent individuals who can manage their own illness. Previously, children seemed to experience themselves as more vulnerable and less competent in relationship to their environment and illness. Presently, as before, children appear to desire involvement in their illness; however, at the same time, they prefer to share responsibility with or hand over responsibility to adults. However, living with diabetes was and remains demanding, and it affects children’s lifeworld. Balancing the children’s vulnerability and agency seems to be the best way to care for children in hospitals. In this article, we thus argue for a lifeworld-led approach when caring for hospitalized children, paying attention to both their vulnerability and agency.

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Section: Discussionsupporting

confidence: 91%

Characteristics of being hospitalized as a child with a new diagnosis of type 1 diabetes: a phenomenological study of children’s past and present experiences

2015

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“…To date, studies have focused on diabetes knowledge among youth with T1DM, 24,25 but few have identified the routine sources of that knowledge or DSME processes. 26 In this study, most participants reported receiving information about diabetes during a clinical visit, but fewer than half received counsel on how to find reliable diabetes information on the Internet.…”

Section: Discussionmentioning

confidence: 99%

Diabetes Self-Management Education Patterns in a US Population-Based Cohort of Youth With Type 1 Diabetes

et al. 2013

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Purpose The purpose of this study is to describe: 1) the receipt of diabetes self-management education (DSME) in a large, diverse cohort of US youth with type 1 diabetes (T1DM); 2) the segregation of self-reported DSME variables into domains; and 3) the demographic and clinical characteristics of youth who receive DSME. Methods Data are from the US population-based cohort, SEARCH for Diabetes in Youth. A cross-sectional analysis was employed using data from 1273 youth < 20 years of age at time of diagnosis of T1DM. Clusters of 19 self-reported DSME variables were derived using factor analysis and their associations with demographic and clinical characteristics were evaluated using polytomous logistic regression. Results Nearly all participants reported receiving DSME content consistent with ‘survival skills’ (e.g., target blood glucose and what to do for low or high blood glucose), yet gaps in continuing education were identified [e.g., fewer than half of participants reported receiving specific medical nutrition therapy (MNT) recommendations]. Five DSME clusters were explored: Receipt of Specific MNT Recommendations, Receipt of Diabetes Information Resources, Receipt of Clinic Visit Information, Receipt of Specific Diabetes Information, and Met with Educator or Nutritionist. Factor scores were significantly associated with demographic and clinical characteristics, including race/ethnicity, socioeconomic status, and diabetes self-management practices. Conclusions Health care providers should work together to address reported gaps in DSME in order to improve patient care.

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“…Roper et al . () discovered participants not only knew about the physiology of T1DM but also about long‐term health consequences if not managed appropriately.…”

Section: Discussionmentioning

confidence: 99%

“…Others with greater knowledge about T1DM and treatment regimens may engage in better self‐management and adherence than those with less knowledge (Roper et al . ). However, emotional distress, hormonal changes, or autonomy needs also influence self‐management (Di Battista et al .…”

Section: Introductionmentioning

confidence: 97%

A qualitative study of young people's perspectives of living with type 1 diabetes: do perceptions vary by levels of metabolic control?

Scholes¹,

Mandleco

Roper

et al. 2012

Journal of Advanced Nursing

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Type 1 diabetes: children and adolescents’ knowledge and questions

Cited by 35 publications

References 25 publications

Characteristics of being hospitalized as a child with a new diagnosis of type 1 diabetes: a phenomenological study of children’s past and present experiences

Characteristics of being hospitalized as a child with a new diagnosis of type 1 diabetes: a phenomenological study of children’s past and present experiences

Diabetes Self-Management Education Patterns in a US Population-Based Cohort of Youth With Type 1 Diabetes

A qualitative study of young people's perspectives of living with type 1 diabetes: do perceptions vary by levels of metabolic control?

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