Parents Of Pediatric Patients Research Articles

Genetics Navigator: protocol for a mixed methods randomized controlled trial evaluating a digital platform to deliver genomic services in Canadian pediatric and adult populations

IntroductionGenetic testing is used across medical disciplines leading to unprecedented demand for genetic services. This has resulted in excessive waitlists and unsustainable pressure on the standard model of genetic healthcare....

Exploring Vaccine Hesitancy Among Parents in a Rural Pediatric Clinic System: A Statistical Study.

Vaccine hesitancy has been a growing concern in the United States, particularly in rural areas where access to healthcare services may be limited. A rural pediatric clinic system in central Louisiana serves a population with historically low childhood immunization rates. This study explored the prevalence and determinants of vaccine hesitancy among parents of pediatric patients at the organization's clinics. A qualitative survey was conducted among parents who declined vaccines for their children at the organization's clinics. The survey collected information on parents' attitudes, beliefs, decision-making processes regarding childhood vaccinations, and demographic information about the parents, including income and education levels. Thematic analysis was used to identify key themes and patterns in the survey responses. Thirty out of 47 parents (response rate: 64%) completed the survey. Most respondents (n=24, 80%) expressed concerns about vaccine safety and potential side effects. Many parents (n=16, 60%) cited information from social media and alternative health sources as influencing their decision to decline vaccines. Religious and philosophical beliefs were also common reasons for vaccine refusal (n=13, 43%). Another significant theme was the lack of trust in healthcare providers and the pharmaceutical industry (n=17, 53%). No significant differences in responses were observed based on the parent's race or the child's sex. Ninety percent of participants (n=27) reported a household income of under $50,000, and 87% of participants (n=26) had a high school education or less. Vaccine hesitancy among parents in this rural pediatric population appears to be driven by concerns about vaccine safety, exposure to misinformation, religious and philosophical beliefs, and distrust in the healthcare system. Addressing these factors through targeted education, provider communication, and community engagement may be essential for improving childhood immunization rates in this vulnerable population. The findings highlight the need for culturally sensitive, evidence-based interventions to combat vaccine hesitancy in rural communities.

Measurement properties of the EQ-5D-Y-3L, PedsQL 4.0, and PROMIS-25 Profile v2.0 in pediatric patients with spinal muscular atrophy

ObjectiveThe objective of this study was to examine the psychometric properties of the EQ-5D-Y-3 L, Patient Reported Outcomes Measurement System 25-item version profile v2.0 (PROMIS-25), and Pediatric Quality of Life Inventory™ version 4.0 Generic Core Scale (PedsQL 4.0) in Chinese pediatric patients with spinal muscular atrophy (SMA).MethodsThe data used in this study were obtained via a web-based cross-sectional survey. Parents of pediatric patients with SMA completed the proxy-reported EQ-5D-Y-3 L, PedsQL 4.0, and PROMIS-25 measures. Information about socioeconomic and health status was also obtained. The ceiling and floor effects, factorial structure, convergent validity, and known-group validity of the three measures were assessed.ResultsThree hundred and sixty-three parents of children aged from 5 to 12 completed the questionnaires. Strong floor effects were observed for the physical function components of the PROMIS-25 (41.3%) and PedsQL 4.0 (67.8%). For EQ-5D-Y-3 L, 84.6% of the respondents reported having “a lot of” problems with the dimensions “walking” and “looking after myself.” Minimal ceiling or floor effects were observed for the EQ-5D-Y-3 L index value. The confirmatory factor analysis supported a six-factor structure for the PROMIS-25, but did not support a four-factor structure for the PedsQL 4.0. All hypothesized correlations of the dimensions among the three measures were confirmed, with coefficients ranging from 0.28 to 0.68. Analysis of variance showed that EQ-5D-Y-3 L demonstrated better known-group validity than the other two measures in 14 out of 16 comparisons.ConclusionsThe EQ-5D-Y-3 L showed better discriminant power than the other two measures. The physical health dimensions of all three measures showed the significant floor effects. These findings provide valuable insights into the effectiveness of these measures at capturing and quantifying the impact of SMA on patients’ health-related quality of life.

Navigating the diagnostic journey of epidermolysis bullosa: a qualitative study of the lived experiences and needs of parents and patients.

Epidermolysis bullosa (EB) concerns a heterogeneous group of rare genetic skin fragility disorders that result in chronic blistering and wounding. EB significantly affects the daily lives of patients, as well as their families. While advances in diagnostics are improving the speed and accuracy of EB diagnosis, little is known about the experiences and needs of parents and patients throughout their diagnostic journey. To explore parent and patient perspectives on the EB diagnostic trajectory to gain an in-depth understanding of their lived experiences and needs. Participants were parents of paediatric patients with EB (n = 18) and adult patients with EB (n = 8) recruited from the Dutch EB Registry. After purposive sampling, they participated in semi-structured interviews via video calls to discuss their personal diagnostic trajectory and the subsequent impact of an EB diagnosis on their (family) life. By applying a constructivist approach, a reflexive thematic analysis was executed to facilitate a dynamic and iterative process, involving inductive open coding of transcripts and constant comparison of data. Ten major themes were developed, representing three distinct groups: (i) parents of children with junctional EB and recessive dystrophic EB; (ii) parents of children with EB simplex and dominant dystrophic EB; and (iii) adult patients with localized EB. The EB diagnostic process appeared to have a diversity of emotional consequences, varying from desperation and uncertainty about the future to clarification and confirmation. The urgent need for a timely diagnosis and accurate prognosis was emphasized, particularly by parents of children with an extensive presentation. Parents and patients expressed shortcomings in clinical practice, with severity ratings in current EB disease terminology, in particular, seeming to have an adverse impact on illness perception, healthcare-seeking behaviour, research participation and engagement in peer support. This study describes the lived experience and needs of parents of children with EB and adult patients with EB during the diagnostic process. We found a pressing need to accelerate diagnostics and urge that the EB community should continue working toward ever-faster diagnosis, public awareness and education. While guiding patients along the diagnostic journey, clinicians should focus their support strategies on tailored medical communication while refraining from value-connoted wording.

Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing

PurposeMeasuring the effects of genomic sequencing (GS) on patients and families is critical for translational research. We aimed to develop and validate an instrument to assess parents’ perceived utility of pediatric diagnostic GS. MethodsInformed by a 5-domain conceptual model, the study comprised 5 steps: (1) item writing, (2) cognitive testing, (3) pilot testing and item reduction, (4) psychometric testing, and (5) evaluation of construct validity. Parents of pediatric patients who had received results of clinically indicated GS participated in structured cognitive interviews and 2 rounds of surveys. After eliminating items based on theory and quantitative performance, we conducted an exploratory factor analysis and calculated Pearson correlations with related instruments. ResultsWe derived the 21-item Pediatric Diagnostic version of the GENEtic Utility (GENE-U) scale, which has a 2-factor structure that includes an Informational Utility subscale (16 items, α = 0.91) and an Emotional Utility subscale (5 items, α = 0.71). Scores can be summed to calculate a Total scale score (α = 0.87). The Informational Utility subscale was strongly associated with empowerment and personal utility of GS, and the Emotional Utility subscale was moderately associated with psychosocial impact and depression and anxiety. ConclusionThe pediatric diagnostic GENE-U scale demonstrated good psychometric performance in this initial evaluation and could be a useful tool for translational genomics researchers, warranting additional validation.

The influence of WeChat education and care program on anxiety, depression, insomnia, and general state of health in parents of pediatric acute lymphoblastic leukemia patients

PurposeWeChat-based education and care program serves as a promising nursing method for relieving mental stress in parents of pediatric patients. This study purposed to explore the influence of the WeChat education and care program (WECP) on mental health, insomnia, and general state of health in parents of pediatric acute lymphoblastic leukemia (ALL) patients.MethodsTotally, 146 parents of 73 primary pediatric ALL patients were randomized into the WECP group (74 parents of 37 patients) and standard care (SC) group (72 parents of 36 patients) to receive a 6-month corresponding intervention. Self-rating anxiety scale (SAS), self-rating depression scale (SDS), Athens insomnia scale (AIS), and 12-item general health questionnaire (GHQ-12) were assessed in parents of patients.ResultsSAS scores at the third month (M3) (P = 0.041) and M6 (P = 0.032) were reduced in WECP group versus SC group. SAS-defined anxiety rate at M6 (P = 0.035) was declined in WECP group versus SC group. SDS score at M6 was descended in WECP group versus SC group (P = 0.024). However, there was no discrepancy in SDS-defined depression rate at any time point between groups (all P > 0.05). AIS scores at M1 (P = 0.015) and M6 (P = 0.021), as well as GHQ-12 scores at M3 (P = 0.007) and M6 (P = 0.001) were decreased in WECP group versus SC group. By subgroup analyses, WECP exhibited good effects at M6 in mothers, but not in fathers.ConclusionWECP is a feasible and efficacy intervention to improve mental stress and health status among parents of pediatric ALL patients, especially in mothers.

Correlates of perceived shared decision making with parents of children with special healthcare needs: Findings from the PART-CHILD study

ObjectiveTo assess the extent of perceived shared decision making (SDM) with parents of pediatric patients and to examine its association with characteristics of patients, professionals, and healthcare facilities. MethodsParents of pediatric patients (n = 4383) were recruited in 15 social pediatric centers in Germany and provided information on perceived SDM (binary CollaboRATEpediatric score: optimal versus suboptimal extent of SDM), child age and sex, type of impairment, appointment, and healthcare professional present at the appointment. Organizational characteristics were assessed in a cross-sectional survey of staff at the study sites. ResultsOverall, 58.4% of parents reported an optimal extent of SDM. The optimal extent of SDM was more likely reported by parents of girls (OR=1.27, p < 0.001) and children with physical (as opposed to cognitive and combined) impairments (OR=1.30, p = 0.006), and after appointments attended by allied health professionals (OR=1.28, p = 0.004). In addition, parents in facilities receiving financing in addition to compensation by statutory health insurance funds were less likely to report an optimal extent of perceived SDM. ConclusionWhile SDM with parents was mostly related to individual characteristics of children and professionals at appointments, organizational characteristics seemed less relevant in our study. Practice implicationsStaff should be made aware of lower SDM with parents of boys, older children, and those with cognitive impairments, and trained to improve the SDM in these groups.

Parent Perspectives on Documentation and Sharing of Health-Related Social Needs Data.

Parents of pediatric patients are key stakeholders in the design and implementation of health-related social needs (HRSN) screening programs. Yet, there is little research exploring their perspectives on the documentation and sharing of HRSN data. We aimed to examine parents' preferences regarding how HRSN data are documented and shared. We conducted semi-structured interviews with parents of hospitalized children participating in an HRSN screening program at a quaternary care children's hospital. Interviews were coded using an inductive and deductive approach to identify emergent themes. The 20 interviewed parents were uniformly female with 55% identifying as Black or African American and 20% identifying as Hispanic or Latino. Parents expressed comfort with electronic health record documentation of HRSN data and the use of International Classification of Diseases, 10th Revision Z codes as long as this information was used to provide families with meaningful support. Most parents viewed social workers and medical teams as the most appropriate recipients of HRSN data. Few parents felt comfortable with HRSN data being shared with payors. Parents desired transparency around HRSN data sharing. Many expressed concerns that documentation and sharing of HRSN data could lead to unwanted or unsafe disclosures or result in child welfare referrals. Parents expressed comfort with HRSN documentation and sharing with health care providers, but requested that providers be transparent and respect parental preferences regarding data sharing to mitigate potential harms. When implementing HRSN support programs, health systems and payors should prioritize transparency around documentation and data sharing with families.

Pediatric allergies in Japan: Coronavirus disease pandemic-related risk factors.

The coronavirus disease 2019 (COVID-19) pandemic impacted various parts of society, including Japanese children with allergies. This study investigated risk factors for pediatric allergic diseases associated with the state of emergency owing to the COVID-19 pandemic in Japan, including during school closures. Parents of pediatric patients (0-15 years) with allergies were enrolled and queried regarding the impact of school closure on pediatric allergies compared to that before the COVID-19 pandemic. A valid response was obtained from 2302 parents; 1740 of them had children with food allergies. Approximately 4% (62/1740) of the parents reported accidental food allergen ingestion was increased compared to that before the COVID-19 pandemic. Accidental ingestion during school closures was associated with increased contact with meals containing allergens meant for siblings or other members of the family at home. The exacerbation rate during the pandemic was highest for atopic dermatitis at 13% (127/976), followed by allergic rhinitis at 8% (58/697), and bronchial asthma at 4% (27/757). The main risk factors for worsening atopic dermatitis, allergic rhinitis, and bronchial asthma were contact dermatitis of the mask area (34/120 total comments); home allergens, such as mites, dogs, and cats (15/51 total comments); and seasonal changes (6/25 total comments), respectively. The main factors affecting allergic diseases were likely related to increased time at home, preventive measures against COVID-19, and refraining from doctor visits. Children with allergies were affected by changes in social conditions; however, some factors, such as preventing accidental ingestion and the management of allergens at home, were similar to those before the COVID-19 pandemic. Patients who had received instructions on allergen avoidance at home before the pandemic were able to manage their disease better even when their social conditions changed.

Caries arrest using silver diamine fluoride: Knowledge, attitude, and perception of parents in Saudi Arabia.

The objective was to assess the current knowledge, attitudes, and perceptions of parents toward the use of Silver Diamine Fluoride in children's primary teeth and identify related factors. In this cross-sectional study, data were collected from Parents of pediatric patients who had appointments at the King Saud University Pediatric Dentistry Clinic and several private clinics in Riyadh, Saudi Arabia from Jan to April 2021. A simple random sampling method was used. An electronic questionnaire was designed to collect data regarding participants' demographics and their knowledge, attitude, and perception toward the use of SDF for their children. A higher proportion of parents/relatives (87.3%) was strongly satisfied with the speed of treatment and its benefits. In terms of disadvantages, 23.8% and 30.4% of the parents/relatives were satisfied and dissatisfied, respectively (P < 0.05). Regarding attitudes, the majority of participants 22.8% responded as neutral to using SDF to treat their children's anterior primary teeth (P < 0.05), whereas 32.2% agreed to the use of SDF in their children's posterior primary teeth (P < 0.05). A higher proportion of parents/relatives who were in the age group of >50 years (27.8%) had responded as "satisfied" compared with the responses of other age groups (P < 0.05). The present study demonstrates that SDF is acceptable among Saudi parents/relatives to arrest dental caries. However, pigmentation of anterior teeth is a major concern.

Assessing Parental Competence and Self-Ratings in Management of Pediatric Type 1 Diabetes and Emergency Glucagon Administration-An Exploratory Observational Study.

Parents of pediatric patients with type I diabetes require competence in hypoglycemia management and skills in glucagon administration to deal with potentially life-threatening severe hypoglycemia. We aimed to compare parents' subjective self-ratings to an objective expert assessment of competences and skills in dealing with severe hypoglycemia. We interviewed 140 participants to assess their subjective self-ratings. The objective expert assessments used a standardized clinical case scenario of severe hypoglycemia and a practical demonstration of glucagon administration. The participants self-rated their competence in hypoglycemia management as good (5) or very good (6), and their skills in administering glucagon as acceptable (3) [Scale: very poor (1) to very good (6)]. In the standardized clinical case scenario, 1.4% (2/140) of participants named all relevant steps of severe hypoglycemia management. In the practical demonstration of glucagon administration, 92.9% (130/140) of participants committed at least one drug handling error; 52.1% (73/140) committed at least one drug handling error rated with high clinical risk. We found discrepancies regarding participants' subjective self-ratings compared to their performance in the respective objective expert assessments. These discrepancies indicate a lack of error awareness and the need for intervention studies to improve competence in hypoglycemia management and glucagon administration.

The impact of the COVID-19 pandemic on parents seeking dental care for their children

Many changes in routine dental care were implemented to protect dentists and patients during the COVID-19 pandemic. Pediatric dentists face unique challenges in dealing with parental fears and behavioral changes in pediatric patients. Despite the meticulous infection control protocols that dental offices have implemented during the pandemic, they experienced significant reductions in routine recall. The aim of this study is to assess the impact of the SARS-CoV-2 pandemic on parents seeking dental care for their children at the Temple Kornberg School of Dentistry (TUKSoD). Parents who currently have their children treated at the TUKSoD were invited to participate in a questionnaire. One hundred and six parents completed the survey anonymously on paper. The survey focused on parents’ attitude changes towards dental care for their children post-pandemic. Bivariate analysis followed by a Two-way ANOVA test was used to calculate the association between the effect of the COVID-19 pandemic on parents of pediatric patients’ decision to seek dental care versus the age of the child. Our results showed that improved dental protocols increased the likelihood of parents bringing their children to the dentist during the COVID pandemic (p &lt; 0.001). The results help pediatric dentists to build trust among their patients during the pandemic. It will also help policymakers understand the pediatric patients’ parents’ concerns and assess their current safety measures. Ultimately, this study will give practitioners more insight into how to handle outbreaks of new COVID-19 variants that may present in the future.

Preoperative anxiety in parents of pediatric patients: related factors and the role of health literacy

Aims: In this study, it was aimed to determine preoperative anxiety levels, related factors, the relationship between health literacy and anxiety in parents of pediatric patients. Methods: This descriptive cross-sectional study was conducted on the parents of children who will be operated in a tertiary hospital between 15 June and 15 September 2022. The number of 82 people were included in the study. Information form introducing children and families, Health Literacy Scale(HLS), State Trait Anxiety Inventory(STAI) questionnaires were applied to parents. p&lt;0.05 was considered significant in statistical analysis. Results: The state anxiety score of the parents participating in the study was 37.51±9.50, trait anxiety score was 42.55±8.83, HLS 45.46±14.34. Preoperative state anxiety level of mothers(39.63±9.97) was higher than that of fathers(34.36±8.71)(p=0.040), trait anxiety level was similar(p=0.189), mothers' health literacy(40.36±11.11) was found to be lower (48.11±15.19) than fathers(p=0.019). The state anxiety level of parents whose income is equal to expenditure was found to be the lowest(33.43±7.33)(p&lt;0.001). While the state anxiety score was found to be significantly lower(p=0.024), the trait anxiety score was similar(p=0.560) and the health literacy score was higher(p=0.042), among the parents who had knowledge about anesthesia. The relationship between state anxiety score and health literacy score was negative and significant(p&lt;0.001). Conclusion: It is seen that the anxiety levels of parents with low health literacy increase before the surgery. It is important to know the factors related to the anxiety levels of the parents before the surgery.

Assessment of tele dentistry usage in pediatric patients.

Abstract:&#x0D; Introduction: Tele medicine is a form of tele-health that involves synergy between telecommunication and dentistry which involves exchange of clinical details and of appropriate pictures for counseling of the patient and treatment plan accordingly.&#x0D; Methodology: This cross-sectional descriptive study was conducted from February 2022 to March 2022 at pediatric patients of Jamshoro and Hyderabad districts coming to pediatric OPD and were having oral health problems too. 200 pediatric patients were selected, questionnaire was made in English, Urdu and Sindhi languages. Parents of pediatric patients were asked various questions regarding usage of tele-dentistry. Data was analyzed using SPSS version 22.&#x0D; Results: 60% of the patients were with tele-dentistry while 40% were not aware about tele-dentistry. according to benefits of using tele-dentistry 40% patients said that it reduces travel time, while 30% said that it reduces time spend or save time while 30% also said that it is convenient.&#x0D; Conclusion: Study showed good patient acceptance towards the use of tele dentistry.&#x0D; &#x0D; Key words: Covid-19, tele dentistry, oral health.

Antibiotic perceptions, adherence, and disposal practices among parents of pediatric patients.

Antibiotics are frequently prescribed for children in the outpatient setting. Although sometimes necessary, antibiotic use is associated with important downstream effects including the development of antimicrobial resistance among human and environmental microorganisms. Current outpatient stewardship efforts focus on guiding appropriate antibiotic prescribing practices among providers, but little is known about parents' understanding of antibiotics and appropriate disposal of leftover antibiotics. To help bridge this gap, we conducted a qualitative study to assess parental understanding of their children's antibiotics, their adherence to antibiotic instructions, and their disposal practices. We conducted a semi-structured interview with parents of 13 children diagnosed with acute respiratory illnesses and prescribed antibiotics in an urban outpatient clinic. We found that parents had limited understanding of how antibiotics work. Although they received instructions about antibiotic use during the healthcare visit, adherence to the prescription and appropriate disposal of antibiotics was suboptimal. Limited baseline understanding of antibiotics, their prior experiences with antibiotics, perceptions about their social networks' antibiotic use, and information provided to them by healthcare providers may influence these behaviors. Our findings can inform educational efforts of outpatient stewardship programs to help optimize parental understanding of how to use and dispose of their children's antibiotics.

Exploring what is important during burn recovery: a qualitative study investigating priorities of patients and healthcare professionals over time

ObjectivesThis qualitative study aimed to investigate: (1) priorities of patients and healthcare professionals during recovery from a burn injury, (2) how priorities change over time and (3) how priorities map...

Knowledge and Perception of Child Maltreatment among Parents of Under 18 children in a Metropolitan City: A Cross-Sectional Study

Introduction: Child maltreatment is the abuse and neglect that occurs to children under 18 years of age. It includes all types of physical and/or emotional ill-treatment, sexual abuse, neglect, negligence and commercial or other exploitation. Objective: To assess the Knowledge and perception of Child maltreatment among parents of Under 18 children. Method: This was a Cross-Sectional Study done among parents of paediatric patients (aged under 18 years) who attended a private tertiary level hospital. A total of 324 selected parents were interviewed during the study period. The study was conducted in the form of a questionnaire which consisted of 3 parts. Results: In the study 96.2%of the parents who participated were aware of the term “child abuse” but among them, 6.1% were unaware of the fact that there are different types of abuse. More than 2/3rd (76.85%) of the parents felt that alcohol influences the behavior of predators of child abuse. Overall, age, education level, and marital status were the statistically significant factors in the current study. Conclusion: The parents in our society today are aware of what child abuse is and its influence on children, society, and the community in general but the knowledge related to legislations have to improve.

An observational pragmatic quality-of-life study on paediatric tonsillectomy and waiting for surgery

PurposeTo investigate parental perceptions of the effects of tonsillectomy on their child’s quality of life while awaiting and following surgery in an Australian public health system.MethodsAn observational pragmatic study was undertaken at a tertiary Australian hospital. Parents of paediatric patients (2–16 years of age) listed for tonsillectomy completed a validated quality-of-life questionnaire (T-14 Paediatric Throat Disorders Outcome Test) at the initial consultation, on day of surgery, 6 weeks post-operatively and 6 months post-operatively. T-14 scores were compared using the Related-Samples Wilcoxon Signed Rank Test.ResultsParents of 167 children participated in this study. There was a median wait time of 174 days (IQR 108–347) from the initial consultation until the day of surgery, with no significant change in median T-14 scores (35 [IQR 22–42] vs 36 [IQR 22–42]; n = 63; p > 0.05). There was a significant decrease from pre-operative T-14 scores to 6 weeks post-operatively (33.5 [IQR 22–42] vs 2 [IQR 0–5]; n = 160; p < 0.001), and this was sustained with a minor improvement at 6 months post-operatively (6 weeks 2 [IQR 0–5] vs 6 months 0 [IQR 0–2]; n = 148; p < 0.001).ConclusionsPaediatric tonsillectomy improves quality of life with a sustained benefit in the long term. There is no improvement to the patient’s quality of life while awaiting tonsillectomy, thus patient welfare can be improved through reducing waiting times for surgery.

Shared decision making and autonomy preferences of pediatric health care providers and parents of pediatric patients.

The aim of the current study was to determine whether parents of pediatric patients and health care providers (i.e., physicians and nurse practitioners) have different preferences for shared decision making (SDM) and whether these preferences vary across medical situations. Participants consisted of parents of children presenting to pediatric clinics (n = 164) and their matched pediatric health care providers (n = 18). Parents and providers completed measures of preferred autonomy for decision-making in general and across specific medical scenarios. Preferences for autonomy were not uniform and varied across situations among providers and among parents. Further, parents and their providers differed from one another in their autonomy preferences across most scenarios, but not in general preferences. The results of this study provide evidence of the complex nature of the provider-parent relationship in pediatric practice. This study highlights the need for providers to consider contextual factors that impact parents' preferences for autonomy when making shared medical decisions. (PsycInfo Database Record (c) 2022 APA, all rights reserved).

Cancer treatment decision-making among parents of paediatric oncology patients in Guatemala: a mixed-methods study

ObjectivesTo examine treatment decision-making priorities and experiences among parents of children with cancer in Guatemala.SettingThis study was conducted at Guatemala’s National Pediatric Cancer Center in Guatemala City.ParticipantsSpanish-speaking parents of paediatric...