Trying to be like everybody else: A qualitative study revealing the importance of social contexts and illness representations among adolescents with type 1 diabetes and their parents.

OBJECTIVE: Type 1 diabetes is one of the most common chronic conditions in young children and adolescents. During the period of adolescence, young people with diabetes often struggle with self-management and have compromised health-related quality of life. This often leads to familial conflicts affecting all family members negatively. The aim of this study is to provide qualitative insight into the everyday life of families with adolescents with type 1 diabetes. METHODS: The data consisted of participatory family workshops conducted using interactive dialogue tools. The total number of participants was 33 (adolescents n = 13, parents n = 20). The adolescents were between 15 and 17 years. The data were analyzed using systematic text condensation. RESULTS: The results showed two main themes. The first theme, Diabetes-friendly and unfriendly social contexts, highlighted how the (dis)comfortability of disclosing diabetes was a significant factor in achieving optimal metabolic control. For parents, it affected their perception of social support. The second theme, incongruent illness representations among family members, dealt with the extended family conflict during the period of adolescence. DISCUSSION: Insights from our study could help healthcare professionals apply a family-centered approach minimizing family conflict and supporting metabolic control when consulting families with adolescents with type 1 diabetes.

An evaluation of the Danish version of the Pediatric Anesthesia Emergence Delirium scale.

BACKGROUND: Emergence Delirium (ED) is a common complication from anesthesia. Although ED has a short duration, detection is important due to the risk that ED poses for post-operative complications in the child. The Pediatric Anesthesia Emergence Delirium (PAED) scale has been translated into Danish, but it has not yet been validated. The aim of this study was to investigate the inter-rater reliability, criterion validity, and responsiveness of the Danish version of the PAED scale as well as to determine the prevalence of ED. METHOD: A sample of 100 post-operative children were enrolled and assessed with the PAED scale at pre-specified time intervals. Inter-rater reliability was assessed independently by 2 raters. For criterion validity, a clinical expert was chosen as the gold standard. Sensitivity and specificity were based on a comparison between the scoring of the raters and the gold standard. Responsiveness was assessed by comparing changes in scores. Prevalence was based on the PAED scale's cut-off level of ≥10 points. RESULTS: A high level of agreement was found, with an intraclass correlation coefficient of 0.85-0.94. Few outliers appeared in the Bland-Altman plot. Sensitivity ranged from 70% to 86%, and the specificity of both raters against the gold standard was 100%. Changes in scores were indicative of responsiveness. Prevalence was 13.2%. CONCLUSION: The Danish version of the PAED scale was found reliable and demonstrated high levels of sensitivity and specificity. In addition, it was possible to identify changes in scores over time. Prevalence was in line with existing literature.

The Cornell Assessment of Pediatric Delirium: Translation and inter-rater reliability in a Danish pediatric intensive care unit.

BACKGROUND: Delirium is a serious medical problem and recognized as a common syndrome in critically ill children. Without routine screening, delirium diagnosis is often missed by the medical providers. Internationally, there are tools to assess pediatric delirium (PD), but none currently available in Danish. The aim of this project was to translate the Cornell Assessment of Pediatric Delirium (CAPD) into Danish and determine its feasibility and reliability in a Danish clinical setting. METHODS: Translation was done in accordance with WHO guidelines. Linguistic and cultural differences were reconciled with the original developers of the instrument. The Danish CAPD was then tested in a prospective cohort of children admitted to a single pediatric intensive care unit at a university hospital in Denmark. Inter-rater reliability was determined using weighted Kappa statistics. RESULTS: Thirty children were enrolled, and 92 delirium assessments were completed. Inter-rater reliability (n = 84) revealed that inter-observer agreement among the nurses was high (κ 0.85). The Danish version of the CAPD was successfully administered in all children. CONCLUSIONS: Standardized assessment tools are a pre-requisite to identify PD. A Danish version of the CAPD now exists, and preliminary testing has demonstrated it as feasible and reliable for use in a Danish clinical setting. A multi-institutional study is needed to determine the prevalence of PD in Denmark.

Family-centred care and traumatic symptoms in parents of children admitted to PICU.

BACKGROUND: Studies show that traumatic stress symptoms are common in parents of children admitted to the pediatric intensive care unit (PICU). Family-centred care (FCC) has shown promising potential in reducing levels of traumatic stress in this group of parents. OBJECTIVES: To investigate the association between parents' experience of nursing care and levels of traumatisation, to identify potential gender differences within this group, and to examine the possible relationships among the severity of a child's illness, the parents' fear of losing their child, and the parents' experience of support and development of acute stress disorder (ASD) symptoms. ETHICAL ISSUES/APPROVAL: This study was approved by The Central Denmark Regional Committee on Health Research Ethics and by the Danish Data Agency (#1-16-02-87-11) and data were stored, protected and destroyed according to their regulations. METHODOLOGY/DESIGN: This cross-sectional study involved 90 parents of children admitted to PICU at the University Hospital of Aarhus from August 2011 to August 2012. The parents filled out a self-report questionnaire package at the time of their child's discharge from the hospital. RESULTS: The experience of support from the nurses was high in both parents and was associated with ASD. About one-third of the parents had ASD or subclinical ASD. No significant gender differences existed when symptoms were measured dimensionally. When measured categorically, 17% of the mothers and 7% of the fathers had ASD. Mothers with very young children had higher levels of acute stress; fathers whose children had high illness severity scores exhibited more acute stress. STUDY LIMITATIONS: Limitations have been identified in relation to the sample size of the study, the cross-sectional design and the short amount of time the families were in contact with PICU. CONCLUSION: The fathers and mothers were very pleased with the perceived care at the unit. The experienced care was positively associated with acute stress, but not with illness severity, or fear of losing the child. More research is needed to understand the dynamics of family-centred care.

Face validity and inter-rater reliability of the Danish version of the modified Yale Preoperative Anxiety Scale.

INTRODUCTION: Preoperative anxiety is common in children and it is associated with an adverse post-operative outcome. The modified Yale Preoperative Anxiety Scale (m-YPAS) was developed to assess preoperative anxiety in children. The purpose of this study was to translate and adapt the m-YPAS to Danish cultural and linguistic conditions and to test its face validity and inter-rater reliability in a clinical setting. MATERIAL AND METHODS: Translation was done in accordance with the WHO guidelines. Face validity and linguistic challenges were resolved in a focus group with five nurse anaesthetists. Inter-rater reliability for the subscales in the m-YPAS was determined at two different time points by using weighted kappa (κw) statistics, whereas agreement on the overall weighted scores was calculated using the intraclass correlation coefficient (ICC). The inter-rater reliability test was done by a paediatric anaesthesiologist consultant, a psychiatrist and the first author. RESULTS: The Danish version of the m-YPAS was considered suitable and its face validity was satisfactory. Inter-rater reliability analysis revealed that inter-observer agreement among three independent raters was good (induction 1: κw: 0.63-0.98, ICC = 0.92; induction 2: κw: 0.72-0.96, ICC = 0.92). CONCLUSION: Standardised and validated assessment tools are needed to evaluate interventions to reduce preoperative anxiety in children. A Danish version of the m-YPAS now exists, and preliminary testing has demonstrated a satisfactory face validity and inter-rater reliability. FUNDING: The study was supported by grants from TrygFonden (Grant number: j.no.7-11-1292). TRIAL REGISTRATION: The Danish Data Protection Agency, the Central Denmark Region, has approved the study (j.no.: 2007-58-0010).