Lived Experiences of Parents of Children with Celiac Disease: A Descriptive Qualitative Study.

Purpose: Celiac disease (CD) is one of the most prevalent food-related illnesses in children, with a global prevalence of approximately 1.4%. CD can create an emotional burden, particularly on mothers, who are mainly responsible for managing challenges related to adherence to a gluten-free diet, high food costs, and food problems in schools and social areas. There is a gap in the literature, and parental experiences of raising children with CD should be explicitly examined. This qualitative study sought to provide insights into the experiences of parents raising a child with CD in the Turkish context. Methods: This study used a descriptive qualitative research methodology and conducted individual semi-structured video-based dyadic interviews with 19 parents. Results: Participants experienced both challenges and motivators through management of their children's CD. Analyses of the interview transcripts through the data uncovered three main themes focusing primarily on parental concerns: (1) parental challenges in child's disease management, (2) supportive care needs, and (3) parental expectations. Conclusion: A multidisciplinary team should approach the child and family immediately after diagnosis, and facilities should support parents with continuing education and psychological, financial, and social assistance.

Comparison of Forward-Leaning and Fowler Position: Effects on Vital Signs, Pain, and Anxiety Scores in Children With Asthma Exacerbations.

BACKGROUND: It is essential to relieve bronchospasm or specific asthma symptoms by administering immediate inhaler treatment during an asthma exacerbation. The present study compared the effect of Fowler position and forward-leaning positions during nebulization on heart rate, SpO2 , breathing frequency, pain, and anxiety levels in children experiencing asthma exacerbations. METHODS: The data originated from a randomized trial that compared 86 participants (study group n = 43, control group n = 43) who presented to the pediatric emergency department with asthma exacerbations between October 2019-February 2020. The subjects were administered nebulization 3 times, during which the study group was placed in the forward-leaning position and the control group in the routine Fowler position. The subjects provided information on chest pain and anxiety levels before and after nebulization, and heart rate, SpO2 , and breathing frequency were measured before and after each nebulization. RESULTS: The difference in the mean SpO2 measured at admission and after the third nebulization was significantly higher (3.2 ± 1.5% vs 2.3 ± 1.9%, P = .01); the difference in the mean breathing frequency was considerably higher (-6.0 ± 1.7 breaths/min vs -3.2 ± 1.8 breaths/min, P < .001), and the difference in the mean pain scores was significantly higher (-3.3 ± 2.5 vs -2.0 ± 2.3, P = .02) in the study group than in the control group. In addition, after the third nebulization, the breathing frequency (22.8 ± 2.8 breaths/min vs 24.2 ± 2.7 breaths/min, P = .02) and pain score of the study group were lower (0.8 ± 1.3 vs 1.5 ± 1.5, P = .01). There was no difference in the mean heart rate (20.6 ± 16.2 beats/min vs 20.0 ± 15.4 beats/min, P = .85) and anxiety levels (-2.0 ± 2.2 vs -1.9 ± 2.2, P = .90) between the groups. CONCLUSIONS: Placing children in a forward-leaning position during nebulization was effective in improving SpO2 and reducing breathing frequency and chest pain. The forward-leaning position implemented during nebulization is a non-pharmacologic method that supports recovery in children with asthma exacerbations.

Care burden and resilience in parents of children with special needs and chronic diseases.

AIM: Comparison of care burden and resilience levels in parents of children with special needs and chronic diseases. METHODS: This study, designed with a cross-sectional and relationship-seeking design, was conducted in a Training and Research Hospital in Turkey. Data was obtained from parents of children with special needs (n = 102) and chronic diseases (n = 102) who presented to the outpatient clinic for routine follow-up between October 2022 and February 2023. The consecutive sampling method was used while choosing the sample. The "Descriptive Characteristics Questionnaire," "Zarit Caregiver Burden Scale (ZCB)," and "Resilience Scale for Adults (RSA)" were used to collect data. Data were evaluated using the SPSS 22.0 statistical program. RESULTS: The burden of care in parents differed significantly between the two groups (p < 0.001), the majority of parents of children with chronic diseases (PCCD) had a mild/moderate care burden, and the majority of parents of children with special needs (PCSN) had a moderate/severe level of care. The care burden scores and total resilience scores were found to be higher in the PCSN group, and the care burden scores and total resilience scores were found to be lower in the PCCD group (p < 0.001). CONCLUSION: This research determined that PCSN showed more care burden and less resilience than PCCD. In this context, it is recommended to regularly monitor the resilience, caregiver burden, and quality of life of caregivers of children with special needs and conduct preventive and strengthening programs.

The effect of education given to Turkish adolescents with Familial Mediterranean fever on anxiety, depression, and quality of life.

To examine the effects of individual education given to Turkish adolescents with Familial Mediterranean fever (FMF) on anxiety, depression, and quality of life. The randomized controlled experimental study was performed on 70 adolescents aged 12-18 years who were diagnosed as having FMF between October 2021 and April 2022 in Turkey. The disease management education was offered individually to adolescents in the intervention group with a booklet entitled "FMF is under my control;" no intervention was applied to adolescents in the control group. The training booklet was prepared by the researchers in a multidisciplinary team and was finalized by taking expert opinions. In the data collection process, a personal information form, the State-Trait Anxiety Inventory for Children (STAI-CH), the children's depression inventory (CDI), and the Pediatric Quality of Life Inventory (PedsQL) were used. After applying the scales specified in the pretest, individual training was given and the posttest was performed 2 months later using the same scales. After the education, there was a statistically significant decrease in the mean CDI score of the intervention group (p < 0.05), whereas there were statistically significant increases in mean scores obtained on PedsQL and its sub-scales (p < 0.05). However, the decrease in the mean STAI-CH score of the intervention group was not statistically significant (p > 0.05). There was no statistically significant difference in the mean STAI-CH, CDI, and PedsQL scores of the control group after the education (p > 0.05).  Conclusion: The effectiveness of the individual education program for adolescents with FMF in improving quality of life and reducing levels of depression within the scope of disease management has been confirmed. It is recommended that all health professionals working with children with FMF regularly provide individual or group-planned education programs. What is Known: • The unpredictability of FMF attacks has a very negative effect on adolescents. • Individual education programs on FMF focus on children with a holistic approach. What is New: • To the best of our knowledge, this study is the first study to evaluate disease management education given to adolescents with FMF. • This is a pioneering study of the use of nurses in the education of adolescents with FMF and in fulfilling their educational roles.