Developing the scale of genetic/genomic awareness in pediatric nurses.

OBJECTIVE: In recent years, genomic information and technology have been increasingly integrated into healthcare services for the prevention of genetic diseases, screening, diagnosis, treatment selection, and follow-up of treatment efficacy. The aim of the study was to develop the Scale of Genetic/Genomic Awareness in Pediatric Nurses (SGAPN) and to evaluate its psychometric properties. MATERIAL AND METHODS: This was a methodological study covering the development of the SGAPN and testing its psychometric properties. SGAPN items were developed based on a literature review and were evaluated by content validity. The SGAPN was then tested for internal consistency coefficients, face validity, criterion validity, and construct validity in a convenience sample of 280 pediatric nurses. RESULTS: The SGAPN is a scale consisting of 32 items. Its Cronbach alpha value was calculated as 0.893. It has a structure with three factors including "genetic/genomic information" (13 items), "genetic transmission information" (7 items), and "genetic education and practices" (12 items). The Cronbach alpha values of the factors were 0.845, 0.600, and 0.893, respectively. CONCLUSION: It is suggested that the SGAPN can be used as a valid and reliable scale in the evaluation of the genetic/genomic information, education, and practices of pediatric nurses.

The effect of dry heat and dry cold application on pain, anxiety and fear levels before blood sample collection in school age children (7-12 years): A randomized controlled study.

BACKGROUND: Blood sampling, which is frequently performed on children admitted to hospital, causes them pain, anxiety and fear. OBJECTIVES: The study was carried out to determine the effects of dry heat and dry cold application before blood sampling on pain, anxiety and fear levels in school age children. METHODS: The study was conducted between June and January 2021 with a parallel-group randomized controlled experimental design. It was carried out with 117 children who applied to the Pediatric Blood Collection Polyclinic of a training and research hospital. The children were assigned to dry heat application, dry cold application and control group by simple randomization. Data were collected using the Child-Family Introductory Information Form, Wong Baker Faces Pain Rating Scale (WBFPS), Child Fear Anxiety Scale (CFAS) and Medical Procedure Fear Scale (MPFS). In the data analysis, descriptive statistics, the Kruskal-Wallis H test, the Dunn test, Yates correction and the Pearson Chi-Square test were used. A level of p < 0.05 was considered statistically significant. RESULTS: It was found that children who were treated with dry heat and dry cold before blood sampling experienced less pain. The anxiety of the children in the dry heat treatment group was lower than the control group. According to the children's MPFS Operational Fear sub-dimension median scores, procedural fear was found to be lower in the dry heat application group. PRACTICE IMPLICATIONS: Pediatric nurses can safely use dry heat and dry cold application in the management of invasive procedure-related pain, and dry heat application in the management of anxiety. TRIAL REGISTRATION: This trial is registered with the US National Institutes of Health (ClinicalTrials.gov) under the number NCT05974319.

Triangle technique: An effective tool for improving nursing students' ability to calculate safe pediatric medication dosages.

Calculating the correct medication dosage for pediatric patients can be difficult for nurses to determine, as the pediatric dose is typically a small fraction of the adult dosage. This study aims to examine the impact of the Triangle Technique on the ability of nursing students to calculate low and high safe dosage ranges in children. To evaluate how this educational tool could improve a nurse's skill in this area, a quasi-experimental pre-/post-test research design was employed including one hundred fifty-eight third-year nursing students. The Pediatric Medication Administration Form and Pediatric Safe Dosage Calculations Quiz (PSDCQ) were used to measure the effectiveness of the Triangle Technique. While <50% (n < 79) of students gave correct answers to each question in PSDCQ before this intervention, all of the participants (N = 158, 100%) gave a correct answer to one question, and >89.2% (n > 141) of the students correctly answered the other four questions of PSDCQ. The change in scores (pre-PSDCQ median score = 0, IQR = 60; post-PSDCQ median score = 100, IQR = 0) post-intervention was statistically significant (z = 10.633, p ≤ .001), indicating that this teaching technique was effective for improving students' ability to calculate pediatric safe dose ranges. Nursing students (n = 144, 91.1%) were satisfied with using Triangle Technique. Using the Triangle Technique can increase nursing students' understanding of how they calculate safe pediatric medication dosages.

The Differences Between Preterm and Term Birth Affecting Initiation and Completion of Toilet Training Among Children: A Retrospective Case-Control Study.

PURPOSE: This study seeks to investigate the possibility the existence of a difference in terms of start and end dates of toilet training between term and preterm children as well as the possible determining factors. MATERIALS AND METHODS: This study was conducted as a 5-year retrospective case (children born preterm-(32 to <37 weeks) - and control (children born at term (>37 weeks + 1 day)) study. The data were collected with a form consisted of questions about demographic data (12 questions) and toilet traning features (10 questions) through face-to-face interviews with the mothers. A chi-square test and logistic regression analysis were conducted to examine the data. Odds ratio was used as a measure of the relation between levels of the dependent variable. p< .01 and p< .05 values were assumed to be statistically significant. RESULTS: The study examined a total of 133 children including 59 preterm children and 74 children born at term including 60 (45.1%) boys and 73 (54.9%) girls. The possibility of starting toilet training at or before 24 months was found to be 6.4 times greater in full-term children than preterm children (OR=6.493). The logistic regression analysis, which aimed at identifying any variables that might affect end date of toilet training, found that despite the tendency to consider preterm   birth as a factor prolonging the duration of toilet training, the difference was not found to be statistically significant (p= .07). CONCLUSION: This study compared full-term and preterm children in terms of start and end dates of toilet training and found that preterm children start toilet training later than full-term children. Based on the results of the study, it is possible to say that preterm birth, gender and birth order affect start date of toilet training. However there is no difference between term and preterm babies on the end date of toilet training.

Validation of the "Mind the Gap" Scale to Assess Satisfaction with Health Care among Adolescents

Background: At present, more than 90% of adolescents with chronic conditions survive into adulthood as health care users and move pediatric to adult care with their chronic illness. Therefore, the need satisfaction scale focuses specifically on transitional care and reflect the increasing expectations among youth and their parents. Aims: To examine the validity and reliability of the Turkish version of Mind the Gap scale. Study Design: Methodological study. Methods: The Turkish versions of Mind the Gap scale and Patient Assessment of Choronic Illness Care scale were applied to the participants in two tertiary hospitals in Ankara. The validity was evaluated with factor analyses and content-scope validity; the reliability was evaluated with item-total score correlation, internal consistency, and continuity methods. Results: A total of 109 adolescents and 157 parents completed the questionaire. The content validity was confirmed. Exploratory factor analysis was used to determine the factor structure of the scale. Both adolescent and parent scales formed three sub-dimensions and explained 71% and 73% of the variation, respectively. The Cronbach's alpha reliability coefficient of Mind the Gap scale 1 and Mind the Gap scale 2 were 0.89 and 0.87, respectively, with internal consistencies of the parent's scales reaching 0.92 and 0.90. The test-retest reliability coefficients totalled 0.88 and 0.85 for the adolescents and parents, respectively. The suitability of the model was examined with confirmatory factor analysis. Conformity indices and x2/df value of the model were in good fit to data. Conclusion: The Turkish version of the Mind the Gap scale is a valid and reliable scale for evaluating the needs, expectations, and satisfaction of adolescents and their parents in terms of health care.

The Turkish version of the Juvenile Arthritis Multidimensional Assessment Report (JAMAR).

The Juvenile Arthritis Multidimensional Assessment Report (JAMAR) is a new parent/patient reported outcome measure that enables a thorough assessment of the disease status in children with juvenile idiopathic arthritis (JIA). We report the results of the cross-cultural adaptation and validation of the parent and patient versions of the JAMAR in the Turkish language. The reading comprehension of the questionnaire was tested in 10 JIA parents and patients. Each participating centre was asked to collect demographic, clinical data and the JAMAR in 100 consecutive JIA patients or all consecutive patients seen in a 6-month period and to administer the JAMAR to 100 healthy children and their parents. The statistical validation phase explored descriptive statistics and the psychometric issues of the JAMAR: the 3 Likert assumptions, floor/ceiling effects, internal consistency, Cronbach's alpha, interscale correlations, test-retest reliability, and construct validity (convergent and discriminant validity). A total of 466 JIA patients (13.7% systemic, 40.6% oligoarticular, 22.5% RF negative poly-arthritis, and 23.2% other categories) and 93 healthy children were enrolled in four centres. The JAMAR components discriminated well-healthy subjects from JIA patients. All JAMAR components revealed good psychometric performances. In conclusion, the Turkish version of the JAMAR is a valid tool for the assessment of children with JIA and is suitable for use both in routine clinical practice and clinical research.

Validation of Transition Readiness Assessment Questionaire in Turkish Adolescents with Diabetes.

BACKGROUND: Today, more than 90% of adolescents with chronic conditions survive into adulthood and move from pediatric care to adult care for the management of their chronic illness. It is important to grant autonomy and ensure that adolescents/young adults are ready to use the adult health care system prior to the transfer of care. However, the lack of a transition readiness assessment tool that is validated, patient-centered, and appropriate to developmental differences in pediatric care is a major obstacle for the transition of care from pediatric services to adult services. AIMS: This study examined the validity and reliability of the Turkish version of the Transition Readiness Assessment Questionnaire, which assesses the readiness for transition from pediatric to adult health care for adolescents/young adults with diabetes mellitus. STUDY DESIGN: Methodological study. METHODS: Participants were 109 adolescents/young adults with type 1 diabetes mellitus aged 14-21 years. After permission was obtained to adapt the Transition Readiness Assessment Questionnaire, the Turkish Transition Readiness Assessment Questionnaire and self-care scale were administered to participants through face-to-face interviews at two pediatric endocrinology clinics. Validity was evaluated by exploratory and confirmatory factor analysis and content-scope validity assessment; reliability was evaluated by item-total score correlation and continuity methods. Internal reliability was assessed by Cronbach's alpha coefficient and criterion validity assessment. RESULTS: The item analysis, exploratory factor analysis, and confirmatory factor analysis identified five basic dimensions, with high internal consistency (0.89-0.75). The ratio χ2/df and other conformity indices were a good fit to the data. The correlation coefficient in the analyses of test-retest scores was 0.86 for the total scale (p<0.05), and the Cronbach's alpha coefficient was 0.88 for overall scale. CONCLUSION: The Turkish Transition Readiness Assessment Questionnaire is a valid and reliable measure of the transition readiness of adolescents/young adults with diabetes mellitus in Turkey. The Transition Readiness Assessment Questionnaire assesses the self-management abilities and health care transition knowledge of adolescents/young adults with diabetes mellitus who need special health care. It can also serve as a guide for health care professionals in detecting the educational fields that are necessary for acquiring self-management and self-care abilities.

Assessment of a Health Promotion Model on Obese Turkish Children.

BACKGROUND: Studies of childhood obesity have shown that fostering healthy life behaviors is more important than losing weight. However, studies reporting this result did not use a theoretical nursing model, which offers a systematic approach and scientific basis for studying the concepts and principles of nursing practice. PURPOSE: The aim of this study was to determine the effects of an intervention that is based on Nola J. Pender's Health Promotion Model (HPM) on the healthy life behaviors and self-confidence of obese children. METHODS: This quasi-experimental study enrolled 86 obese children and their parents (48 in the experimental group and 38 in the control group) as participants. The data collection tool was composed of an adaptation of a Pender's model-based evaluation form and the "Piers-Harris Self Confidence Scale." The experimental group received HPM-based individual and group education, whereas the control group received routine follow-up only. Whereas qualitative data were analyzed using content analysis, quantitative data were analyzed using a paired t test and Mann-Whitney U or Wilcoxon test. RESULTS: At the end of the education and follow-up program, experimental group participants showed a significant increase in healthy eating habits such as noting food portions (Z = 5.231, p < .001) and choosing water instead of sugary drinks (Z = 4.130, p < .001) and spent significantly less time per day in front of a television or computer (Z = 5.085, p < .001). Furthermore, after the intervention, experimental group participants had reduced their total body mass index standard deviation score (Z = 6.031, p < .001) and had an average self-confidence score that differed significantly from the control group (Z = 3.796, p < .001) and that was significantly higher than the average preintervention score (Z = 5.971, p < .01). CONCLUSIONS: Health professionals must recognize the physical, psychological, and social risks of obesity in children and focus on these problems to identify appropriate solutions. It is recommended that education and nursing follow-up programs be developed based on nursing models. This study found that patient education based on Pender's HPM increased healthy life behaviors (e.g., healthy nutrition and increased exercise time) and decreased sedentary activity substantially in the experimental group. This study further suggests that, although Pender's HPM has not been tested on obese children, this model offers effective guidelines for nursing activities that are targeted on developing healthy life behaviors in children.

EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases.

To develop standards and recommendations for transitional care for young people (YP) with juvenile-onset rheumatic and musculoskeletal diseases (jRMD). The consensus process involved the following: (1) establishing an international expert panel to include patients and representatives from multidisciplinary teams in adult and paediatric rheumatology; (2) a systematic review of published models of transitional care in jRMDs, potential standards and recommendations, strategies for implementation and tools to evaluate services and outcomes; (3) setting the framework, developing the process map and generating a first draft of standards and recommendations; (4) further iteration of recommendations; (5) establishing consensus recommendations with Delphi methodology and (6) establishing standards and quality indicators. The final consensus derived 12 specific recommendations for YP with jRMD focused on transitional care. These included: high-quality, multidisciplinary care starting in early adolescence; the integral role of a transition co-ordinator; transition policies and protocols; efficient communications; transfer documentation; an open electronic-based platform to access resources; appropriate training for paediatric and adult healthcare teams; secure funding to continue treatments and services into adult rheumatology and the need for increased evidence to inform best practice. These consensus-based recommendations inform strategies to reach optimal outcomes in transitional care for YP with jRMD based on available evidence and expert opinion. They need to be implemented in the context of individual countries, healthcare systems and regulatory frameworks.

A novel assessment tool for clinical care of patients with autoinflammatory disease: juvenile autoinflammatory disease multidimensional assessment report.

OBJECTIVES: To develop and test a new multidimensional questionnaire for assessment of children with auto-inflammatory disease (AID) such as FMF, PFAPA, HIDS, TRAPS in standard clinical care. METHODS: The juvenile auto-inflammatory disease multidimensional assessment report (JAIMAR) includes 16 parent or patient-centered measures and four dimensions that assess functional status, pain, therapeutic compliance and health-related quality of life (physical, social, school, emotional status) with disease outcome. It is proposed for use as both a proxy-report and a patient self-report, with the suggested age range of 8-18 years for use as a self-report. RESULTS: 250 children with FMF were included in the study. Total of 179 forms were filled up by parents and patients, and 71 forms were filled up by parents having children less than 8 years. Completing and scoring the JAIMAR can be done in 15 minutes. For the JAIMAR's dimensions, the Cronbach's alpha coefficient for internal consistency was between 0.507-0.998. There was a significant and a positive correlation between the test-retest scale scores (ICC=0.607-0.966). Concerning construct validity, all factors loadings were above 0.30. For the criterion validity, the correlation level between each dimension and the related scale ranged from medium (r=0.329, p<0.0001) to large (r=0.894, p<0.0001). The parents' proxy-reported and children's self-reported data were outstandingly concordant (r=0.770-0.989). CONCLUSIONS: The development of the JAIMAR introduces a new and multi-dimensional approach in paediatric rheumatology practice. It is a new tool for children with auto-inflammatory dis-ease and it may help enhance their quality of care.

Development of a medication adherence scale for familial Mediterranean fever (MASIF) in a cohort of Turkish children.

OBJECTIVES: To develop and assess the validity and reliability of an adherence scale concerning medical treatment in paediatric FMF patients. METHODS: The Medication Adherence Scale in FMF Patients (MASIF) is a 18-item questionnaire that evaluates adherence to medication in four domains. Validation of the instrument was accomplished in paediatric FMF patients (aged 2-18 years) under medication at least for 6 months. The first step was to build up the scale through qualitative approach (with interviews using semi-structured questions). Validation analyses included assessment of feasibility, face and content validity; construct validity, internal consistency and test-retest reliability. RESULTS: One hundred and fifty patients with FMF were enrolled in the study. The mean age of the patients was 11.11±4.02 years and 48.7% of them were male. The MASIF was found to be feasible and valid for both face and content. It correlated with the Morisky Medication Adherence Scale as a gold standard thereby demonstrating good construct validity (r=0.515, p<0.001). Assessment of content validity identified four subscales. The internal consistency, Cronbach's alpha was 0.728. There was a positive and significant correlation between test and retest scores (r=0.843; p<0.001). Also, a significant correlation between parents' and children's reports (r=0.781, p<0.001). CONCLUSIONS: Based on these results, the use of this scale to assess and follow up the adherence to treatment in paediatric FMF patients under medical treatment is recommended.

The invisible part of the iceberg: qualitative aspects of childhood vasculitis.

OBJECTIVES: The aim of this study was to develop a multidimensional assessment instrument named 'Juvenile Vasculitis Multidimensional Assessment Report' (J-VAMAR) to measure all the domains of the vasculitis. In this qualitative study, it is primarily aimed to enrich the item generation for the J-VAMAR. METHODS: Twelve children with vasculitis and their mothers (n=12) were enrolled in this study. The data were collected using both a demographic data form and a semi-structured interview form. The study was performed on individual patient face-to face interview. Data were analysed by grounded theory and the N Vivo 9 software program. RESULTS: Four categories were obtained. These categories were (i) physical effects of the illness, (ii) emotional effects of the illness, (iii) social effects of the illness and (iv) experienced challenges related to treatment process. In the physical effect category severe pain, physical limitations, weakness and fatigue; in emotional effect category thought of death, hopelessness and dissatisfaction about body image; in the social effects category decrease in academic performance, absenteeism to school and concealing the sickness from friends were the most common features. In the fourth category, subjects complained of lifelong drug use and frequency of daily drug consumptions. CONCLUSIONS: These results provide evidence-based data for the assessment of children with vasculitis by several domains including physical, emotional and social aspects as well as treatment protocols. The study provides the basis and/or justification for selecting the domains that the developing multidimensional instrument should include.